July 2016

My journey started at the dentist, yup, the dentist. While in the waiting room they handed me a standard medical form to fill out, any allergies, do you smoke etc.. One question was, "Who is your primary doctor", I did not have one, and "Date of you last physical", I could not remember. I only went to the doctor if I had a symptom. I decided to find a doctor and get a physical.

The only reason I mention this is to stress the importance of getting your PSA checked, especially if you are over 50. Most of the people reading this already know the importance of getting your PSA checked. Spread the word! If I did not go to the dentist I would have not have thought about getting a physical. With my type of cancer, there are NO symptoms until it is almost too late to do anything. Spread the word!

Life's a journey not a destination

August 2016

On the 17^th I saw Dr. Frederixon at the Apple Valley Center, when I left, I felt pretty good. There is not a history of cancer in my background, I never smoked, I do not take any medications, I do exercise moderately, although, I could stand to lose a few pounds, so I was feeling pretty good.

08/19: There are days you never forget, some remember exactly where they were and what they were doing when JFK was assassinated, or when planes hit the twin towers, it was after work, I was picking my mother-in-law up at her senior living residence, I was pulling into a parking spot when my cell phone rang, it was Dr. Frederixon. He told me that my PSA came back high, 58, and wanted me to see a urologist, he recommended Dr. Sershon of Metro Urology, Dr. Frederixon said he would make a call and get me an appointment. After dinner my wife and I took my mother-in-law back to her apartment, on the way home I told my wife of the results. I must admit I was feeling a bit overwhelmed. I am basically a positive person so staying positive throughout this process I think will help.

The next day I went to the internet to find everything I could about Prostate-Specific Antigen (PSA) levels, Prostate Cancer and the credentials of Dr. Sershon.

Overall, I learned that a PSA of 58 is not just a little high, it is really high. There is no need to panic, prostate cancer is one of the slower growing cancers and has a good cure rate. Lastly, Dr. Sershon has good credentials, a highly skilled surgeon who is tops in his field, he did his Residency at the Mayo in Rochester, leader in the development of robotic surgery for prostate cancer in Minnesota, and is the Director of the Robotic Surgery Program and Director of the Prostate Cancer Program at United Hospital in St. Paul, MN. I feel really confident and lucky to have Dr Sershon as my doctor.

08/29: First meeting with Dr. Sershon

Dr. Sershon has a good personality, that is a plus. Dr. Sershon gave me a bladder scan which was normal, and a Digital Rectal Exam (DRE). Dr. Sershon did not feel any abnormalities, and recommended a prostate biopsy. He was very informative of the upcoming procedure and gave me some background material on prostate cancer. All of these events seem surreal in a way, because I feel healthy.

September

9/7: Prostate Biopsy

I drove to his office in the morning and had the procedure done just like he explained. He puts the implement up my rectum and there was a click and a pinch, at first it made me jump. Knowing what to expect, I did not flinch as much the next time I heard the click and pinch. 12 in all. I felt a little queasy, I attributed to not having breakfast. There was a little blood in my urine the first time I went to the bathroom, but that was it.

9/12: CT / Bone Scan

CT and Bone scan day, yippee. Went to United Hospital, drank some green stuff and then was injected with some radioactive dye. Then they ran my body through two different types of scan machines. All in all, I lot of waiting around, the actual tests did not take that long.

9/20: Results and Decision

Dr. Sershon is a good communicator. He explained all the numbers behind the Gleason score, the went over the results of the CT and Bone scan.

• PSA: 58.95
• 7 out of 12 samples tested positive for cancer
• Gleason Score: (3+4) 7 (Grade Group 2)
• Bone Scan: No evidence of skeletal metastases
• CT Scan: Marked prostate gland enlargement, No evidence of metastasis, chest, abdomen or pelvis.

Dr. Sershon went through the results in their totality and outlined options. I chose to have the da Vinci Robotic Prostatectomy surgery. I felt this was right for me for a lot of reasons. First since my PSA was so high, I felt the best thing to do was removal, my quality of life should only change a little. I understood the risk of slight incontinence and ED. Also, once the prostate is removed, there is only recovery, with radiation, it seems there is a longer duration of sickness and recovery. Lastly, if you are going to have robotic surgery, there is no better person than Dr. Sershon. It is a personal choice, there is no right or wrong answer, it is what you feel is best for you, and what you are comfortable with. For me, I did not think twice about it. I scheduled the surgery for the first available time, no sense in prolonging the inevitable.

9/28: da Vinci Robotic Prostatectomy Surgery

My wife and I took an extended weekend vacation to Onalaska, WI, so we did not have to sit around all weekend waiting for Wednesday. It was 42 days from Annual Physical to da Vinci Robotic Prostatectomy surgery. It seems like I am on the fast track.

da Vinci Robotic Prostatectomy surgery was scheduled 4:30pm at St. John's Hospital in Maplewood. I never had any surgery before, so this was a new and unwanted experience. Since I do not drink a lot a water, they had trouble finding veins to poke. Then they shave your belly, the anesthesiologist pays you a visit, and then Dr. Sershon came by to say hi. Then they start the anesthesia and as I can remember, rolling down the hall into the operating room, things were getting fuzzy, there was a lot of stainless steel, then that was it, out like a light.

The operation took a little over three hours, and then a few hours in the recovery room. My wife said I gave some pretty funny answers to the nurses when I was in the recovery room. I do not remember any of it.

At 3am, I was wide awake, the nurse came in and I scared the cr*p out of her when I said Hi. At 8:30 they pulled a foot and a half of drain tube from me, put a bandage on the wound, then unhooked the IV. I was sitting in a chair by 9am. After breakfast, they had me up and walking. Moved kind of slow, and had to walk with my Foley catheter bag. They had me rest, then they took me for another stroll. That was most of the day, rest and stroll, rest and stroll. A nurse came in and gave me instructions on how to care for my Foley catheter and how to change the dressing on my 6 wounds. At 3pm they discharged me with a prescription for pain pills, and a lot gauze and tape.

The Foley was a little uncomfortable, but on the upside, I did not have to go to the bathroom in the middle of the night. If you put a little bacitracin on the tip, entry point, it was a little more comfortable. I took Codeine at night and Tylenol during the day for pain. During the day I would walk around the house, then graduated to walking down the block.

Funny side note: I was pacing around the house and my wife was watching the news and told me to come see. There being interview by a local newscaster was Dr. Sershon. Evidently it was National Prostate Health Month and he was talking about the importance of screenings and men's prostate health.

I only took 4 Codeine pills in all, mainly at night, Tylenol sufficed during the day. I will say the recovery time is lessened greatly when you do the robotic prostatectomy. If you have to have it done, it is the way to go.

I must admit, after the operation, only then did I go to the internet and see how the da Vinci machine worked. I am glad I did it after, the machine looks a little like an octopus with 5 big medal arms. It is amazing how such a big bulky machine can be so delicate.

October

10/7: Went to Dr Sershon office and had the Foley catheter removed. They emptied the balloon and gently pulled it out. It was not really painful, just a little sensitive. Now was the start of the depends and pads. I now wear depends at night and pads during the day. I tend to leak at night more as I think I am more relaxed.

10/10: Every morning I changed the bandages on the six wounds. Started taking the bus downtown to work. At this point I was wearing a pad during the day and depends at night. I do my daily Kegel exercises to help my incontinence. This exercises really works!

10/14: Post OP Follow-Up

Post Op results in a nutshell

• Gleason: (3+4) 7
• Lymph Nodes: 10 examined, All negative for Tumor (0/10)
• Margins: Uninvolved (negative)
• Seminal Vesicle Invasion: Present (2mm)
• pT3bN0M0

Dr. Sershon talked about how the operation went, He told us the surgery went extremely well and what we should expect going forward. For the next two years I get a PSA check every 3 months, then if all is well, every six months for two years, then once a year. So now the waiting begins. I am living my life as normal but daily dreaded the prospect of a non-zero PSA.

December

12/16: PSA 0.24

This number is not as low as I had hoped! I expected it to be 0.0x something. This result was posted to the patent portal with a remark by Dr. Sershon: "This is low. We will re-check PSA in 3 months". Not sure what to make of the result. Will have to wait until April.

January

1/17: Attend an ED class sponsored by Metro Urology. They went over the various medications and vacuum pumps to get blood flowing through your penis. I got a prescription for Sildenafil, a Cialis or Viagra type medication. It did help but in the morning I always had a headache.

April

4/4: At the start I wore Depends at night and pads during the day, then I changed to pads at night and shields during the day, a step in the right direction. It took a while to get the confidence to stop wearing shields during the day, but I did stop. I still will leak a drop once in a while especially when tired, lifting something heavy or a good sneeze. When I am out I have the confidence that I hold it until I find a restroom. I have not had an accident due to not being able to hold it. I still wear the pads at night.

My six wounds are healing nicely. I stopped dressing them a while ago. I must have done something strenuous because the wound right below my belly button opened up. I could not believe how deep your skin is. I kept dressing that one until it healed.

4/17: PSA 0.23

It went down, not by much, but the right direction. Once again on the portal the remark was: "PSA stable, continue observation". The waiting game begins again.

July

07/13: PSA 0.29

Slightly alarmed, first I thought my PSA was a little high considering I do not have a prostate, now it went up. Dr. Sershon remark this time was: "PSA is stable. Safe to check again in 3 months. If it starts to go up we will consider radiation therapy". I know that the PSA test is not entirely accurate, and this deviation may be within the margin of error, but I am still worried. I am not sure if the margin of error is applicable since I do not have a prostate. After the next PSA test I have an appointment to meet with Dr. Sershon. In the meantime, in August, I have my annual physical, and will get a PSA test then, just to see where I stand.

August

8/15: Went back to the health club, if I am going to get radiation, I might as well try to get in better shape. Hopefully this will offset some of the side effects. Staying positive that this is just a bump in the road.

8/23: Annual Physical

In great shape, blood pressure, cholesterol, heart rate, all except for rising PSA. I was hoping my PSA would remain flat, but expected it to rise, so when it came back as a 0.32, I was not surprised. It went up 0.03 in one month. More waiting!

10/12: One Year Out PSA 0.38

Had my blood drawn for a PSA test at 8:15AM, received a voicemail on my phone at 3:30pm from Dr. Sershon, he said "PSA is up a bit" and "With this level it is time to consider radiation oncology evaluation. Risk of spread outside of the pelvis very low." His call caused me a little bit of concern for two reasons 1) The PSA results were done in 7 hours, and 2) he called me directly, not his assistant or nurse. I have a consultation with him in six days, in the meantime, my wife and I are going to take a mini vacation to take our minds off the upcoming next steps.

10/18: Dr. Sershon Consultation

My wife and I sat down with Dr. Sershon to discuss next steps. He was very informative answering my questions before I had a chance to ask them. Here was his opinion in a nutshell: He was not too concerned when my PSA was in the 0.2x range as he has had many cases where it was stable at that level for many years. But in my case it was not stable, it continues to rise. He brought up the subject of the Choline C-11 PET scan at the Mayo in Rochester to find the cells but said the scan does not work well with a PSA under 2.0, and he did not want to wait until my PSA reached that level. He said radiation becomes less effective the higher the PSA number gets. Due to my age and health he recommended to do a blanket pelvis radiation. He recommended Dr. Palmer at United Hospital in St. Paul. Dr. Sershon said that radiation therapy is a science and an art and Dr. Palmer is good at both. Dr. Palmer's bio reads: Graduated from the University of Minnesota Medical School in 1992, specializes in Radiation Oncology, and has been in practice for over 25 years. Next step, meet with Dr. Palmer.

10/24: Scheduling a consultation with Dr. Palmer (Radiation Oncologist)

During the phone call I was informed that the meeting would last 2 to 2 and a half hours, a half hour with the nurse to go over procedure and questions, and an hour with Dr. Palmer to go over treatment options and a treatment path. And about an hour for a "Planning Scan". The Planning Scan will help in the planning for the radiation treatment. The treatment will start about two weeks after the consultation. And as you know, there will be forms to fill out beforehand.

11/02: Meeting with Dr. Palmer (Radiation Oncologist)

Dr. Palmer spoke quietly and you had to drag information out of him sometimes, but once you got him going, he did explain things well. Going in, I had an expectation of what my treatment plan would be, but Dr. Palmer introduced a small wrinkle.

As expected he recommended radiation - Image Guided Radiation Therapy (IGRT) and Volumetric Modulated Arc Therapy (VMAT). Dr. Palmer said that VMAT is a new type of Intensity-Modulated Radiation Therapy (IMRT) technique. The machine continuously reshapes and changes the intensity of the radiation beam as it moves around the body. It delivers a more tightly focused treatment to the cancer in a significantly shorter time.

The wrinkle was the recommendation of hormone therapy prior to the radiation treatment. I did not take this into consideration when I went in. He said due to my TNM score of T3b, PSA of 58.95 at start and there was a small seminal vesicle invasion, this put me in the high risk group. He did say on the spectrum of risk I was at the low end of high risk.

He explained that hormone therapy for prostate cancer is used to stop your body from producing the male hormone testosterone, which fuels the growth of prostate cancer cells, this causes the cancer cells to die or to grow more slowly. He did caution that at this time studies concluded that this concept has yet to be proven beneficial. Dr. Palmer went over the side effects of hormone therapy, low libido, hot flashes, weight gain, but pointed out this should be minimal. He did stress I have to drink plenty of water, eat well and get exercise. This would offset some of the side effects of hormone / radiation therapy.

With all that said, he did say that since I was in good health overall, that there should be no long lasting adverse effects to doing the hormone therapy he was suggesting. He was only to give me one shot that would last the duration of the radiation treatment, that would be the only hormone injection I would get. So I decided to go with the hormone therapy in conjunction with radiation to give me the best chance to eradicate the cancer. So before I left I received a 30 mg of Lupron (leuprolide) injection. This should last about 4 months.

The plan is to let the Lupron work its magic for a month, then I would come in for a simulation (SIM) appointment. The purpose of this visit is to outline or map the exact area to be treated, and get an organ map baseline. Then there will be a 5-7 day lag while they figure out the treatment plan. The radiotherapy planning makes sure that the cancer gets the prescribed dose of radiation while normal body tissues get as little as possible.

After the SIM appointment, my first appointment will be a mock radiation appointment. They will do everything except do radiation, then the treatments will start for real after that.

After treatment I was told that the next 2 or 3 PSA tests should be undetectable due the residual effect of the Lupron and Radiation. It won't be until 6 to 9 months after the fact that PSA numbers will be meaningful again.

So now I have to wait until December 1^st, I can't wait to get the show on the road and get started.

11/14: Nutrition Before, During and After Cancer Treatment

On the second Tuesday of every month Minnesota Oncology holds a nutritional seminar for cancer patents. Since I was working, my wife went. Here are some of the things she learned.

To minimize fatigue you should snack trough out the day (5-6 times). Eat according to the clock not when you feel hungry.

Optimally your diet should include about 18oz of grass fed beef per week and two meals of organic chicken and two meals of fish (caught wild, not farm raised). You should eat some sort of protein three times a day. This will minimize fatigue. Lots of beans, peas and green veggies for lipids.

You must drink 64 oz. or better of water. The instructor said that radiation is like giving a sunburn to your internal organs, so it is important to keep them hydrated.

Supplements for the most part they are not effective in preventing cancer or in helping with the recovery. With the exception of vitamin "D3". Especially in the northern climates, people tend to be vitamin "D3" deficient. When doing through radiation you should possibly take a vitamin "D3" (2000-5000) supplement to keep your bones strong. The brand "NOW" was recommended. Fish oil is also recommended to fight inflammation. You should be careful what other vitamins you are taking with radiation treatments as they may affect the radiation treatment effectiveness. Emergen-C was called out as a supplement drink that would adversely effect radiation treatments.

You should exercise at least 30 minutes a day minimum. This will help fight fatigue, ideally, you should exercise for an hour to build muscle and endurance. Remain as physically active as able.

When going through radiation treatment don't lose weight! During your treatment, you will be weighed once a week, and the goal is not to lose weight. Your treatment may be canceled if you lose too much weight. East many small meals / snacks throughout the day.

It seems that doctors are laser focused on treating cancer using their specialty, Dr. Sershon doing the da Vinci Robotic Prostatectomy surgery while Dr. Palmer using radiation. They were both very lacks in informing you what you can do holistically to help your body fight cancer. The instructor stated that if you have eight weeks of treatment allow eight weeks of recovery time. My wife found this seminar very informative. The instructor gave out her office number in case we had any questions, and would meet again if we wanted. She was a great resource.

This is defiantly not the focus of physicians, it is not even on their radar.

The instructor gave a simplistic overview of the three Cancer process stages:

Initiation - Pro-carcinogens enter the cell

• Nutrients can block the change

• Once the cell is damaged it cannot be repaired

Promotion

• Products that promote the proliferation of cells

• Result in increased number of mutated (changed) cells

Progression

• Latent initiated cells can be transformed into differentiated cells that progress into a tumor

• May be a process that happens over years

• Can often be reversed with lifestyle choices

I must admit I did not realize how much nutrition plays in the fight against cancer.

12/01: Simulation (SIM) Appointment

I emptied my bladder a half hour prior to the appointment, then drank 16oz of water on the drive to MN Oncology in St. Paul as prescribed by the radiographer. The process was fairly easy and stress free. The radiographer had me remove may shoes and pants so she could mark my stomach and hips with a felt pen and later tattoos. She had me lie on the scanner table in the correct position, they immobilized my legs in a leg mold, the same mold to be used at each treatment to make sure my legs are in the same position each time. She marked my body in a few places with a felt tip pen. Then the table started to move in and out of the Radiotherapy CT Scanner "polo hole". After about 15 minutes she came in and took some measurements and then gave me three tattoo dots, one on each hip and one on my stomach, I felt only a pinch. These permanent tattoos will be used in getting me in the exact same position for each treatment. Then she took 4 or 5 pictures with a camera to make sure in the future I am in the same position. Positioning is extremely important in this process. The Radiotherapy CT Scanner created a detailed image of the treatment fields and created a map of the area to be treated.

After I dressed she went over next steps and she answered all my questions. Over the next two weeks my treatment plan will be created by a dosimetrist, physicist and my radiation oncologist.

Then I will then have a mock appointment and be given my treatment plan, how many weeks the treatment will last and the overall dose. She also said there are only 8 radiographer's and over the course of the weeks I will get to each one of them.

After the appointment my wife and I went to breakfast at Day by Day in St. Paul. The reason I mention this is that I drank 3 cups of coffee and a few hours later I and to go to the bathroom. Ask me to drink 16oz of water and hold it for an hour and a half and it nearly killed me, it is all a mind game.

12/14: Mock Appointment

Again, I emptied my bladder a half hour prior to the mock appointment, then drank 16oz of water on the drive to MN Oncology in St. Paul. Then checked in using their iPad check in system. Once in the room, jacket and shoes off and undid my pants below my hips so they could locate the tattoos. Then I laid on the VMAT table and put my legs in my leg molds they made in the SIM appointment. Then they gave me the plastic ring to hold over my chest so I would have somewhere to put my arms. Kristin and Ken left the room and closed a large lead door. Lasers came out of the wall and located the tattoos for positioning, the table jiggled just slightly, again getting the positioning just so. Then the machine rotated around me, and that was it! Then I pulled up my pants and put on my shoes and then Kristin and Ken went over my treatment schedule.

I am to go for seven weeks, 35 treatments or as they say 35 fractions. Since Christmas and New Year's day fall on a Monday, I have off, but I have to go for seven weeks and two days, 35 treatments is 35 treatments. I am to get 200 rads (2 Gy) per treatment for a total of 7000 rads (70 Gy) over the 35 treatments.

Just an update on the Lupron shot, up until now I did not have any side effects, but just yesterday I had mild hot flash. Only every once in a while I get a little hot. Is it me, or did it take a long time for the Lupron to kick in.

12/18: Start of Radiation Day 1

Here we go…

Went to work in downtown Minneapolis, at 3:30 took the light rail to the Fort Snelling Park and Ride and drove the 15 minutes to MN Oncology, right near United Hospital. As usual I emptied my bladder a half hour prior to the appointment, and then drank 16oz of water on the drive to MN Oncology. Then checked in using their iPad check in system.

Same routine as before, jacket and shoes off, I laid on the VMAT table and put my legs in my leg molds they made in the SIM appointment. Then they gave me the plastic ring to hold over my chest, they spent some time making sure I was in the right position, the machine rotated around me a few times. I made sure I was breathing regularly so as not to through off the radiation beams. Soft music in the background and movement of the machine rotating were the only sounds. I did not feel a thing. From start to finish was about 15 minutes.

34 more to go!

1/4: Radiation Day 12

This whole process is very repetitious. I did get a look at what the technicians look at. The first time the machine rotates around you, it takes a map of your internal organs, bladder, rectum, prostate bed etc. Then they overlay this image with the image taken during the SIM appointment.

This is one of the reasons why they want your bladder to be the same fullness each time, to match up the images. As the technician takes me back to the treatment area, the first thing they ask is... How is your Bladder?

After they take the daily images and do the overlay they do some minor adjustments to the table so the images line up exactly as possible, you feel the table juggle a little. Then a minute later the radiation begins. I daydream for 5 minutes and it is over.

I am feeling no side effects yet. The hardest part is keeping your bladder full for the treatment. It gets a little uncomfortable about a half hour prior to the treatment, and right after, and I mean right after, I empty my bladder.

By the time I go to work and get the radiation treatment, I get home about 5pm, and I do not feel like going to the gym to get some exercise. So I am going for 40 minute walks, I know I should be getting more exercise, but for now this is it. It does not help that the past week the high temp was -4. Burrrrr

I just want to give a shout out to the staff of MN Oncology, they are awesome. Professional and personable. They make the treatments tolerable.

23 more to go.

1/19: Radiation Day 23

Twenty three days in, over half way and still feeling no side effects. It almost feels surreal as I am feeling so well. I just hope this does the trick because I know the next set of treatments will probably not be so good. The time seemed to go quick with the holidays mixed in. Now I am in for the home stretch, this I am sure this will seam longer.

As usual the radiation technicians are great, moving some times around to best fit my schedule when they can.

12 more to go.

2/6: Radiation Day 35 Last Treatment

Doing the happy dance. Still feeling well, no fatigue or any other side effects. The treatment routine has become an integral part of my life for seven weeks, I won't know what to do with myself after work. Maybe I can think of something. After my last treatment the Radiation staff gave me a diploma of sorts, a certificate of completion! They are a great crew of technicians.

I saw Dr. Palmer for the last time, and received my discharge papers.

Feeling a little apprehensive as while I was being treated, I was doing something to fight the cancer, now that it is over, the waiting begins, it is out of my hands.

My next step is a PSA test about 4 months out. This PSA number should be undetectable due to the residual effects of the radiation and Lupron shot. The real test will be the one I take sometime in September or October. I am thinking positive.

No more to go…..

DONE…..

3/9: The Aftermath of Radiation

One month out, nada, nothing, zip, no side effects. I know I am very blessed in this regard as I know some people are not as lucky. In the meantime life goes on, go to work, babysit the grandkids, plan a trip to Europe for June. Life is too short to put off stuff that is on your bucket list.

5/4: First Test After Radiation PSA < 0.10 (undetectable)

It's about time! Prostate removal, Lupron injection, 7 weeks of radiation, it's about time I got the less than sign. Still feeling good. Now it is PSA test every three months for a few years. Hopefully I will be updating this post many years from now stating - still undetectable! I do realize that life is a journey and at any time I can be back on this same path.

8/3: PSA 0.16

Not what I had hoped or expected. Only 6 months out from radiation and it went from undetectable to 0.16. I could be wrong, but learning from the past, my PSA should have stayed at undetectable, the only other option is up. Dr. Sershon said to recheck in three months. This is going to be a long three months. In the mean time I am going to see what my possible next steps should be if my PSA keeps rising. Meanwhile I checked Europe off my bucket list, next Greece in 2020.

5/4: First Test After Radiation PSA < 0.10 (undetectable)

It's about time! Prostate removal, Lupron injection, 7 weeks of radiation, it's about time I got the less than sign. Still feeling good. Now it is PSA test every three months for a few years. Hopefully I will be updating this post many years from now stating - still undetectable! I do realize that life is a journey and at any time I can be back on this same path.

8/3: PSA 0.16

Not what I had hoped or expected. Only 6 months out from radiation and it went from undetectable to 0.16. I could be wrong, but learning from the past, my PSA should have stayed at undetectable, the only other option is up. Dr. Sershon said to recheck in three months. This is going to be a long three months. In the mean time I am going to see what my possible next step should be if my PSA keeps rising. Meanwhile I checked Europe off my bucket list, next Greece in 2020.

8/22: Prostate Cancer 2 years out

It was about this time two years ago that I got the news I had prostate cancer. Since then, I did not wake up every day and feel the dread of cancer or that it weighed heavy on my mind every day. It was all about what I can do to fight the cancer off and make the best decisions for me. It did take a lot of time and money to eradicate or at least push in to remission at this point.

I came to realization that I will never be "cured", there will always be a small dark cloud that it may come back, but I am "whole". I made the best decisions for me, I own it, no second guessing, no going back, only forward, it is what it is. I can only wait and see what my future brings and deal with it as it comes. It is time for family and friends, bring on my bucket list!

11/9: PSA 0.41

Well, that did not take long, 8 months after radiation and my PSA is on the rise. I switched my follow up treatment meetings from Dr Sershon to Dr Palmer. Dr Palmer is an oncologist specializing in radiation, where as Dr Sershon specializes in prostate surgery. The only reason I read about a rising PSA after radiation is something called a PSA bounce. I am not convinced that this fluctuation is an abnormality after radiation treatment.

11/15: Consultation with Dr Palmer

Met with Dr Palmer, he told me the PSA bounce is only if you still have a prostate, so that leaves out that explanation as to why my PSA went up. Dr Palmer said the most likely reason for the rise in PSA levels is that there are still cancer cells growing, ever so slowly and they are most likely outside the prostate bed. Since my PSA number is low, 0.41, there is no test that can pick up were the cancer cells are. The normal Positron Emission Tomography (PET) scan needs a PSA of 10.0 or better to accurately pick up cancer cells. So the new plan is to wait 4 months and recheck the PSA number. If it is close to 2.0 he will do a Axumin PET scan, this scan has a high degree of accuracy if your PSA is 2.0 or better, this PET scan is fairly new. If the scan reveals the cancer cells and can be treated with radiation, he will, otherwise he will send me down the hall to a Medical Oncologist who specializes in diagnosing and treating cancer with chemotherapy and other drugs. I think Androgen deprivation therapy (ADT) may be in my future. So when I get back from Costa Rica in March, I will get another blood draw and see where we go from here.

03/15/19: Consultation with Dr Palmer PSA 1.52

I got home from Costa Rica on the 9th, blood draw on the 12th and two days later, walaa, 1.52. My heart sank a little, 4 months and almost quadrupled. So my wife and I went back to Dr. Palmer to see what our next steps are to eradicate this cancer.

Dr. Palmer said that the trend was that my PSA was rising, but he thought it would double and maybe be at .84 or so, he was a little surprised that it was at 1.52. He explained the possible dramatic rise in the PSA was most likely due the Lupron shot totally wearing off. He mentioned that a four month Lupron shot could stay in your body for 8 to 10 months. He also said that the radiation treatment most likely did nothing. I realize now that if your PSA rises after a prostatectomy, it is an educated guess that the remaining cancer cells are in the prostate bed. In reality, since the PSA number is so low, the cancer cannot be detected in any test, so it is really just a guess.

So, next steps, Dr. Palmer suggested taking a Axumin PET test to locate the cancer cells. This is some of what I learned about the Axumin PET scan:

The Axumin scan is approved for men who have developed a rising PSA after previous radiation or surgery. Historically, simple bone scans and CAT scans required PSA levels in the 10 to 30 range before enough cancer would be present to be detected on a scan. The Axumin PET scan has a 85% success rate with a PSA of just 2.0.

Previous PET scans used a radioactive tracer molecule attached to a sugar-based delivery agent. Axumin (18F-Fluciclovine) exploits the fact that prostate cancers absorb amino acids at a much more rapid pace than normal cells. Axumin consists of a radioactive tracer linked to an amino acid. Since the cancer cells absorb the amino acids more avidly than normal cells, the radiation concentrates inside the tumor cells. Also Axumin Imaging studies show it is ideal for soft tissue, and for bone imaging.

So my next step is to get this test approved through my health insurance, then schedule the test. Currently there are only 3 places in the Twin Cities that will do this test, and they do it only once a week. The test was approved by the FDA in 2017. As I told my wife, I am lucky to live near a major city that has all the newest medical facility's. Dr. Palmer said that if they can locate the cancer to a specific spot, like in a lymph node, that can use radiation to target that area. Else, they will start on first, Androgen deprivation therapy (ADT), which will reduces the levels of androgen hormones, with drugs to prevent the prostate cancer cells from growing. The goal of ADT is to reduce levels of male hormones, called androgens, in the body, to stop them from aiding prostate cancer cells growth. Depending upon the results, it may be in conjunction with some sort of chemotherapy. I'll keep you updated.

03/28/19: Axumin PET Scan rejected by insurance (temporarily)

The Axumin PET Scan was rejected by insurance, temporarily. This was not totally unexpected. Since the tests accuracy rate is 85% at a PSA of 2.0, they wanted to get my PSA up to 2.0. This makes sense as since the test is expensive they want to make sure I get the best chance of detecting the cancer. The test is pre-approved as long as my PSA is 2.0 or above. So, let's do some more of my favorite thing…. Waiting. This is kind of a oxymoronic situation, you do not want the cancer to grow, I spent the last two years trying to stop it from growing, but here I am, waiting for it to grow so we can "see" were it is. (Heavy sigh!) I have a PSA blood draw on May 10^th. We will see were we from there.

4/5/19: Thoughts on Exercise / Food Intake / Mediation / Healing Touch / Massage

Most of my journal is about doctors, tests, PSA levels, next steps, etc. I would like to write about some non-technical (doctor) things I have tried and am doing. First and foremost I need to say I am originally a New Yorker and thus by nature very skeptical so trying meditation or healing touch is well beyond my comfort level or belief level. With that said…. I will take the above topics one at a time.

Exercise: All for it, am I doing it consistently, no, if I had to grade myself I would get a "D". I made a lot of excuses not to go to the gym all winter. When I do go, I feel good afterward, so I know it is beneficial. Now that the weather is warmer (above 40, I live in MN after all) I hope to do more walking. My wife likes to bike, so hopefully more biking as well. I can stand to lose at least 20 lbs. My wife is also trying to get to go to a Yoga class, she says it is good exercise, great for flexibility and relaxation. I am not sure yet. Lesson learned, do not be like me, exercise makes you feel better especially during radiation treatments. I will let you know if I am making any improvement in this area.

Food Intake: I would give myself a "B-". My wife and I eat only organic meats and eggs, we only eat beef once a week, otherwise it is chicken, fish and pork. We bought ½ a hog, ¼ cow, chickens, all organic. I am eating more vegetables, some are ok, some I choke down. I hope my wife does not read this, I steal a donut at work sometimes. I went from 4 packets of sugar in my coffee to one packet of Truvia, this is a big win. I have only two or three captain and cokes a week, I know they have a lot of sugar content. Am a vegan, no, can I do better, yes. In this area, it is a work in progress.

Mediation and Positive Thinking: Helpful when stressed. This was a stretch goal. I am trying Mindfulness of Breathing mediation, I usually do it before bed time. I concentrate on my breathing, and try to calm the mind from work and cancer. It does work, it really calms the mind. I also truly believe in positive thinking. I believe the mind is a powerful untapped source, if you keep thinking you are going to die of cancer, you will die of cancer sooner than later. If you have a positive outlook, you may still die of cancer, but it will be later not sooner. I give myself a "B-" for not being consistent.

Healing Touch: Wow, really a stretch goal! What is healing touch you say?

Healing touch starts with the idea that people are naturally healthy and the way you live and think may disturb your natural energy. The Practitioners through a series of focus movements change a person's energy flow and restore their natural health. Some research studies have shown that, like yoga and meditation, healing touch reduces anxiety.

This is a little out there… but this has been in practice in India since 1,500 BC. I am skeptical of all the energy disturbances in your body and using Healing Touch to get them working together again. There is something to be said about natural practices, but I do not think this is for me. On the upside, the sessions were relaxing.

Massage: I do not think this has any long lasting healing properties, but if you are stressed, it is sure a way to relax you.

In Summary: Exercise, Food Intake, Positive Thinking are a must to keep your body feeling good and your mind clear. For me, I can not one day wake up a vegan and exercise an hour a day and like it. I have to make small changes and build on them for it to become sustainable. Life is a work in progress, although I do want to get better at some things sooner than later. I will say that doctors are so focused on their specialty that they do not stress enough, or offer many if any resources on alternative helpful things you can do. They should immediately put you in touch with a dietitian and life style couch.

Now back to our regularly scheduled program… tests and waiting.

05/09/19: Family and Friends Support and Other Ramblings

I know you were looking forward to seeing my PSA level and reading how the story unfolds, but something happened that made me reflect upon my journey and wanted to share it with you. At work we have a monthly All Call meeting with the entire department, via teleconference, with people from across the country. To make a long story short, a guest speaker dropped out at the last minute and they wanted to fill some time so Mary opened up and told us about her personal journey with breast cancer. Every once in a while people tell person story's in these meetings, but non like Mary, after all I work for a bank. She said the day she was told it was like being punched in the gut! I know that feeling well. I could relate to a lot of her journey. Some of her slides showed her as a kid growing up in rural Wisconsin, and at the top it read "Before BC". She said it stood for "Before Breast Cancer". This got me thinking about two things, first, why did she just not say BREAST CANCER. It is not a dirty word that needs to be redacted from a blog, or a department meeting if you are talking about it, it was what you have / had, own it, say it loud. If you have the courage to talk in front of 100 people, have the courage to type out the word cancer. I do not go around telling people I have prostate cancer, only if the conversation really lends itself, will I talk about my journey, but I have no problem saying the word.. cancer.

My second thought is, "Before BC", life before breast cancer, and life after breast cancer?? I think of my life as one long life, birth till I am 6 feet under. There are things that drastically changed my life far greater than a cancer diagnosis at this point, (notice the underlining), moving from NY to MN for a job, getting married, kids, to me they were life altering. Prostate cancer, at this point, is financially draining, although not too bad, and seeing a lot of doctors and getting a lot of procedures. Oh, and taking vials upon vials of blood. Please, I do not want to minimize prostate cancer, it is a horrible, horrific disease, but I will not let it define me. It is part of my story, but far from the whole story. Just not to keep you hanging, Mary's cancer was removed as it was found very early, and is currently cancer free. If you know Mary, she is a tremendously positive person. I truly believe that helps.

"Sometimes the bad things that happen in our lives put us directly on the path to the best things that will ever happen to us"

The one positive thing that came out of prostate cancer, I know what you are thinking.. positive, yup. My wife and I no longer think about doing things and going on vacation. If we think it, we do it, within reason of course, I am not made of money. For years we thought about going to Europe, as you know from a previous post, checked it off bucket list. In 2020, Tahiti, then after that Greece. We stopped making excuses and instead spend our energy planning trips. You realize time is short, cancer or no cancer. I will not touch my retirement saving as I do plan on living to 95. Cancer be dammed!

Lastly, support from friends and family has been overwhelming. Being a guy, sexist I know, I do not readily communicate with close family and friends about every step. Fighting prostate cancer is slow going, after a two year fight, it is as natural as breathing, I plan on continue breathing. But my wife, bless her soul, she keeps my brothers, nieces, cousins and friends updated via email. Which is great because I would be bad at the communication piece. Months would go by, and the day before a PSA test, my wife would get texts and emails from family and friends to let us know they are thinking of us. I am so grateful for their support I cannot tell you. I am glad I do not get the texts because I would blubber all over my cell phone and it would short out. But seriously, I do truly appreciate all the well wishes from my friends and family.

All this time between treatments gives me time to expound my feelings, you have to read through it to get to the good stuff. And now for the results, not kidding this time.

05/10/19 PSA 3.09

Holy cr*p, the insurance wanted it above 2.0, so here we are, I think I am an over achiever. If you do the math my PSA doubles every 2.2 months. For the first time it is really real.... So far it has been an easy fight, I always planned (humph), that eventually my PSA would be undeletable, and I would do the every 3 month blood test, them 6 month etc. I did suspect it would come back sometime, but in about 5 to 10 years. I now, for the first time, I see a major struggle ahead. I underestimated the voracity of prostate cancer! I found a lot of technical stuff on the internet about doubling time, but here is an excerpt from an article I read:

By Mark Scholz, MD | Board-Certified Physician | Updated April 25, 2019

Treatment selection is heavily influenced by the rate of PSA rise. For example, if the PSA doubles in less than three months, aggressive combination treatment with Lupron plus radiation is probably required. If the PSA doubling rate is between six and 12 months, a less aggressive treatment approach with radiation alone, or intermittent Lupron would be reasonable.

A brisk PSA doubling time, say three months or less, is a powerful indication of a potentially life-threatening situation. Even though the scans may be clear, treatment should be aggressive. Even using unorthodox treatment may be warranted. New agents such as Zytiga or Xtandi might be considered. Recent studies also indicate that men have better survival when they take six cycles of Taxotere along with Lupron.

Zytiga and Taxotere are Hormone / chemotherapy drugs, Xtandi and Lupron are hormone suppression drugs. I do realize you have to take everything you read on the internet with a grain of salt, but I have to have a serious talk with Dr. Palmer about life expectancy. On the up side, I checked the insurance company's box, a PSA above 2.0.

05/21/19 Axumin PET Scan rejected by insurance (again)

So, with my PSA comfortably above 2.0 I though the approval of the Axumin PET Scan was a no brainer, but I underestimated the insurance company reluctance of approving this test. They denied the test stating that I did not have a current CT and Bone scan, the last and only one I had was in 2016. Dr. Palmer ended up having a Peer to Peer call with the insurance company doctors and Dr. Palmer stated his case why a CT and Bone scan were unnecessary, they still denied the test until those two scans were done. I talked to Dr. Palmer's nurse, she said that they do not often request a Axumin test, but when they do, every insurance company initially rejects it, some multiple times before agreeing to it. It is always an uphill battle, the insurance companies are really reluctant to pay for it. It was amazing that Dr. Palmer's nurse got me scheduled to take the CT and Bone scan on 5/23, in just two days. She put a rush read on the scans so they can have the results the next day. I must admit this whole insurance thing has been keeping me up at night.

05/23/19: CT / Bone Scan (Again)

Went to United Hospital, the technician put in a port took some blood for a creatinine test. A creatinine test checks that your kidneys are functioning properly because contrast material used could cause kidney damage in people with poor kidney function. Then I was injected with some radioactive tracer, you know it is dangerous stuff when the syringe comes in a lead tube. Then off to the waiting room and I drank 32oz of water, then off to the CT scan. They hook up an IV to the port and as the tracer material goes in, you feel warm and like you have to pee, a strange sensation. This scan only takes about 10 minutes. Then you wait around because the Bone scan has to be done 3 hours after the injection. On the scanning bed the camera is inches from your nose and goes very slowly from your head to your feet, takes about 25 minutes. Bam, you are done. I was really anxious with these tests because the results determined if I get the Axumin test.

At 3:45 I got a call from MN Oncology, the test results were negative, so no metastasis, just as Dr. Palmer predicted. They were going to submit the results to the insurance company again. Another insurance check box checked. So now I have a long Memorial Day weekend to see if they have another hoop I have to jump through, or will they approve the Axumin scan.

06/13/19: Support Group

Live and learn, I should have done this two years ago! Seems like I am always late to the party, late in getting PSA checked, late in going to a support group. After learning about rising PSA and doubling time, I decide to seek a support group. Living near a big city (two actually) you would figure there would many support groups. I found that was not the case, at least for prostate cancer. I was told from one group I called that they stopped meeting because of low attendance and that men tend not to attend support groups as much as women. I found one for "patients with prostate cancer" at the "The Center for Magnetic Resonance Research" building on the U of M campus. They also have a separate "Caregiver Support Group" that my wife may attend. It was comforting to know I was in the company of other men walking down the same road. I got a fresh perspective on the journey and made a few contacts for which I can rely on to help me on my journey.

06/14/19: Axumin PET Scan (Finally)

This insurance company finally approved the test, so I took the next available slot to have it done. It was done at Minnesota Oncology Maplewood Cancer Center office. This was like any other image, except they did the injection of the tracer while you were lying down, and once they removed the port, within 5 minutes you were being scanned. Since I asked, I got a parting gift of a disk with my scan images. Since I am not a Axumin scan reader, I cannot tell one spot from another. I will have to wait for the written report.

05/18/19: Consultation with Dr Palmer

That was not what I expected, but it should have been. The Axumin scan did not show where the cancer is hiding. After doing some research, it often does not show a definitive result. It is frustrating that there is no clarity of my situation. Dr Palmer referred me to Dr Ducker a medical oncologist. Since Dr. Palmer has nothing to radiate, now on to ADT. I feel like I am on a tread mill which is on a roller coaster.

Also, I reached out to someone from my support group for some advice about next course of action. They suggested I read "Androgen Deprivation Therapy, Second Edition: An Essential Guide for Prostate Cancer Patients and Their Loved Ones" by Richard Wassersug, PhD. The first thing that struck home was that ADT is not a cure, it causes prostate cancer to shrink, but will not kill it. ADT like medications for high blood pressure and diabetes are meant to control the diseasenot cure it. Prostate cancer becomes a chronic disease. So now I must try to even out the roller coaster, I am in it for the long haul. I will say this is a must read for people facing ADT.

05/24/19: Consultation with Dr Thomas Ducker (Medical Oncology)

Never go into a doctor's office expecting a certain result, life provides too many twists and turns. Dr Ducker discussed why intermittent ADT may not be a good fit because of my doubling time. Here is a current graph of my PSA results. It is not pretty.

He recommended one of two courses of action, the first would be the text book roadmap for people in my situation. He would start me on Leuprolide Acetate (Lupron) and add medications as the conditions warrant it.

The second, and here's the twist, he said I was a good fit for a clinical trial "A phase three study of Androgen Annihilation in High-Risk Biochemically Relapsed Prostate Cancer:Alliance Foundation Trial (AFT-19)", gotta like the name! When I said I might be interested, he asked a research nurse from the Metro Minnesota Community Oncology research consortium (MMCORC) to come in and tell me about the study. The goal of this research is not to develop a new drug, but to see if a few of the current drugs are more effective and in what doses when administered in various combinations. Group 1 would get Degarelix (Firmagon), group 2 would get Degarelix (Firmagon) and Apalutamide (Erleada) and the group 3 would get Degarelix (Firmagon), Apalutamide (Erleada) and Abiraterone (Zytiga) / Prednisone (Deltasone), the Prednisone is to help with the side effects of the Abiraterone. Once you register with the study, a computer randomizer puts you in one of the three groups. You have no say on that. I would be on the study for a year and can drop out at any time. So, if my PSA is not suppressed, or I am having debilitating side effects, I can drop out and pursue a new course of action. All the drugs are paid for by the study except the Firmagon which insurance will pay for. I have to get regular blood draws to monitor PSA, testosterone, liver function among other things. After the year is done, the study, for me, ends, although they do follow your journey for 6 years after. So at this point Dr Ducker and I will have to decide if the current protocol is working, and will insurance pay for the treatment, or do we do something different. Well after some discussion with the doctor and my wife, I was in. The textbook protocol is the median outcomes of people who lived a long life and people who died way too early. It really is a crap shoot, just like the study. In the study material it said, "The study drug(s)/study approach may not be better, and could possibly be worse, than the usual approach for your cancer." Strangely, after that statement, it felt right, I am in with both feet, whatever happens, no looking back!

06/28/19: Prep work for the start of ADT (PSA 3.50)

Had a blood draw to determine baseline levels of PSA, Complete Blood Count (CBC), testosterone and others. Then saw the research nurse to sign the consent papers for the trial and go over what is expected.

07/08/19: Start of the Clinical Trial, ADT

After a week of anxiety, I was put in Group 1, Firmagon only. Since I am in with both feet I will reflect on what this means just once, I am only human after all. Group 1, my group, is what Dr. Ducker would have done to start, just with Lupron. So, I am not getting a lesser treatment, but part of me wants to do group 3 and just blast the cancer, the scary part of that is there are many more side effects. I would like group 2, the middle of the road. It feels like I would be going a little more than the text book roadmap process. The one good thing about starting slow is that ADT only works for about 8 years before it starts to become ineffective. So here we are… now to look forward.

I had aDEXA (Dual Energy X-ray Absorptiometry or Bone Density Scan) in the AM. Then a blood draw that went horribly wrong. I did not drink enough water combined with small veins and some stress, they poked me twice, came up dry, I broke into a cold sweat. Then they brought in the big guns, they had me lie down and two nurses came in and finally got the 5 vials of blood they needed. Lesson learned.. drink water! Then Dr. Ducker gave me the once over, the trial nurse came in and gave me more instructions. Finally a nurse that just gives injections came in, two 140 mg injections in the belly. I lied down, just in case! The poke was like a bad horse fly bite, but in order to get in the Firmagon she had to do it over 30 seconds, twice. And just advertised, the injection site was a little red and a dull pain lasted 5 days. My baseline going into the trial is PSA of 3.50, Testosterone of 358, Thyroid stimulating hormone (TSH) is 1.66, WBC is 7.9, RBC is 5.86. So it goes, next labs and injection August 5^th. I will check in, in a few months and let you know how it goes.

09/16/19: (C2D1 - Aug PSA 0.70; C3D1 - Sep PSA 0.20)

Before we get to the good stuff, I just thought you might like to know why insurance company's make you jump through hoops to get a Axumin scan, it cost $23,017, I had to pay $4,115. Just a thought here... Healthcare in America is broken. I will move on now.

My August blood draw went better this time, although I had to be poked twice! The nurse remembered me from last time and now I have a new nick name... Pincushion Pete! Oh well. But, on the upside my PSA went from 3.50 to 0.70 in 28 days. I was never worried that Firmagon would not do the job, my long-term concern is that I cannot be on Firmagon forever, we will see what happens in a year. For now, one day at a time. Just in case you were wondering, the injection site was red, and the area was tender for about a week. So far very little side effects, occasionally, I feel a little warm, that's it.

I started a workout plan to help offset the side effects of Firmagon. I hired a personal trainer at the local gym to give me a little boost and accountability. Beth is not just about a workout plan, but she is also helping me make a food plan. She is an RN, personal trainer and nutritionist, 3 in one! No more donuts, instead, rice cakes and nut butter and protein shakes. I am hoping to make a lifestyle change that is healthier and that I can stick to, I will let you know how it goes.

My September blood draw went well, only one poke! I see a pattern, sign in, do a quality of life questionnaire, blood draw, see Dr. Ducker, Firmagon injection, see scheduler for next appointment, done, rinse, repeat in 28 days. My PSA was 0.20, I am a little disappointed that my PSA is not 0.00, but I do like the trend. One month at a time. Strange reaction to the Firmagon, or maybe it was just me, but when I got home, my injection site was uncomfortable, as usual. But while watching TV that night, I got the chills, put on a heavy blanket when I went to bed. Did not get a wink of sleep, felt better the next day, and the next night I sleep like a rock. I do not know what that is all about.

I will check in, in a few months, unless something monumental happens. I will leave you with this for now, I have this hanging in my cube at work.

For yesterday is but a dream,

And tomorrow is only a vision.

But today well lived,

Makes every yesterday

A dream of happiness

And every tomorrow

A vision of hope.

Look well, therefore,

To this day

~ a Sanskrit proverb

10/31/19: (C4D1 - Oct, 1 PSA 0.10; C5D1 - Oct, 29 PSA <0.05)

Ok, I could not wait another month to share the good news, I am doing the happy dance. Firmagon drove down my PSA to undetectable, and my testosterone to 23. I love this chart!

I know what you are thinking, this is just a treatment not a cure, but still it is pretty good. I know I did not win the war, just a battle, but hey, I'll take the win. To get those good numbers, I just had my Cycle 5 injection on Tuesday. As usual, my stomach was red, and tender to the touch. I do not get really good quality sleep the two days after the injection, but I suspect all will be better by the weekend. Life rolls on.

Keep Calm and Fight On

1/2/20: (C6D1 - Nov, 29 PSA 0.05; C7D1 - Dec, 24 PSA 0.05)

Been on Firmagon for 7 months and feeling pretty good. I think there is a minor uptick in hot flashes, about once a week, but not bad.

Now is a good as time as any to reflect upon the previous year.

CT scan, Dexa scan, Axumin scan, PSA climbs to 3.50, Joined support group, Started back at the gym, Started ADT, Entered clinical trial AFT-19 (Firmagon only arm), PSA now .05, Testosterone is 23

Makes me tired just reading it. But also…….

Vacation in Costa Rica, Family, Concerts, Plays, Friends, Polar Plunge, Biwabik, Biking, State Fair, and Grandkids, Grandkids, Grandkids!

So what am I thankful for…. My wife for her never ending support, my friends and family also for their support, doctors and researchers who come up with new and better ways to combat cancer, grandkids, waking up every morning! And so much more.

Can't wait to see what 2020 brings, there is always something to be thankful for. I will leave you with this for now….

Every minute someone leaves this world behind.
We are all in "the line" without knowing it.
We never know how many people are before us.
We can not move to the back of the line.
We can not step out of the line.
We can not avoid the line.

So while we wait in line -

Make moments count.
Make priorities.
Make the time.
Make your gifts known.
Make a nobody feel like a somebody.
Make your voice heard.
Make the small things big.
Make someone smile.
Make the change.
Make love.
Make up.
Make peace.
Make sure to tell your people they are loved.
Make sure to have no regrets.
Make sure you are ready.

3/19/20: (C8D1 - Jan, 21 PSA 0.05; C9D1 - Feb, 18 PSA 0.05; C10D1 - Mar, 17 PSA 0.05)

Firmagon is still going its job! As for side effects, I have no hot flashes or fatigue. I am still going to the gym two or three times a week and I think that helps. I do have a very mild case of breast tenderness:

Gynecomastia is an enlargement or swelling of breast tissue in males. Tender to the touch. It is most commonly caused by male estrogen levels that are too high or are out of balance with testosterone levels.

Also, the past few cycles, a few hours after the injection my temperature spikes to about 102, I get the chills. The next day it drops to about 100, then by the next day it is normal. I guess that my immune system thinks the Firmagon is an evil invader and tries to fight it off, after a few days my immune system gives up. Usually four days after my injection the tenderness at the injection site dissipates. All in all, the side effects are manageable.

In anticipation of my participation ending in the clinical trial in June, I went for a second opinion at the Mayo Clinic in Rochester. I figured why not go to one of the best hospitals in the country, especially since it is an hour drive from my house. I saw Dr. Kwon. Here is his recommendation:

Patient is currently on clinical trial through his local medical oncologist in receiving monthly Firmagon injections through July 2020. Patient will inform Mayo clinic if he decides to discontinue androgen deprivation therapy early and come off study. When patient discontinued androgen deprivation therapy, Dr. Kwon has recommended patient check PSA every other month and return for repeat evaluation with C11 PET choline scan and prostate MRI when PSA reaches 2.0 to 4.0 ng/mL.

Dr. Kwon and his team are of the mindset that he wants my PSA to rise so we can perform a C11 PET image and "establish the distribution of disease". Based on disease distribution, he will be able to make treatment recommendations. Dr Kwon stressed two things, first, androgen deprivation therapy is a suppressive agent and not curative, and he did not think enough was done to try to locate the cancer. Second, just because my PSA is rising after stopping ADT, it dos not mean the cancer is spreading, it means it is awaking from a dormant state. Dr. Kwon want to find it and radiate it. In the meantime, Dr Kwon's team gave my Axumin scan an over-read, here are the results:

The radiologist commented on nonspecific lymph nodes in the retroperitoneum (the back of your abdomen). These lymph nodes could be representative of inflammation or prostate cancer. There only appeared to be slight uptake of the tracer in the retroperitoneum, but not convincing for metastatic prostate cancer. Given your clinical scenario, we wouldn't think this low level of activity is prostate cancer. The scan would not prompt any further work up at this time.

After my meeting with Dr. Kwon I had my normal Firmagon injection 5 days later. At that time, I asked my treating physician, Dr. Ducker, about his plan going forward. He said he would stop taking Firmagon after the trial ends and see how long it takes before the PSA starts to rise. This timeframe is what the clinical trial really wants to know. Once my PSA get to 0.2, I am off the trial. After that I could get another PET scan or go on Lupron. He said there would be a small risk in changing from Firmagon to Lupron, but Lupron I would have to come in every 3 months or so as opposed to every 28 days.

I thought about just staying on an ADT drug, but I have learned that ADT has a mean effective time of 8 years. That is, 50% of the people who take an ADT drug, the drug will only remain effective for 8 years before the cancer learns to grow in a low testosterone environment. And for the other 50% it is more than 8 years. So, doing the math, I would have to start on more aggressive drugs when I am 65, worst case, and 70 best case. That is 20 years short of when I would like to live to.

The Plan

My plan going forward is to continue with the clinical trial, my last Firmagon injection will be in June. I will then stop taking any ADT drug, kind of scary, and get my PSA tested every other month starting in September until it reaches near 4.0 ng/mL. I will then contact Dr Kwon to get the C11 PET choline scan and see were we go from there. I figure now is the time to try to find the cancer and radiate it while I am only 60, I am not getting any younger.

There is something very safe being on a clinical trial and my PSA being undetectable. My new plan is like jumping off a cliff, I just want to take Firmagon for the next 30 years or so and call it good. But I know Firmagon will not work for 30 years. My gut tells me once the Firmagon wears off in July my PSA will rise rapidly, I hope I am wrong. It is all a crap shoot, don't look back.

I will leave you with this……

In this life
We are all just walking
Up the mountain and
We can sing as we climb
Or we can complain
About our sore feet
Whichever we choose
We still gotta do the hike

I decided
A long time ago
Singing made a lot
More sense

6/9/20: (C11D1 - Apr, 14 PSA 0.05; C12D1 - May, 12 PSA 0.05; C13D1 - Jun, 9 PSA 0.05)

Last Firmagon shot (lucky 13), now we wait for my PSA to rise. When it gets to 0.20 the trial will require me to get some imaging, then I am done with the trial. When it gets to 4.0, I will get a C-11 Choline image at Mayo in Rochester, hopefully it will take a year or more.

So, most people reading this want to know what the side effects were like, here is a reflection of the past year.

For the most part, I did not have many hot flashes, per say. The last five months or so, I would get very warm at night, but did not break into a sweat, then I would cool down. It was far from life altering.

When I started the trial in July of 2019 until March of 2020, when Covid-19 closed the gyms, I was going to the gym 2 or 3 times a week, along with walking and biking. Now that the gyms are closed, I still do a lot of walking and biking. So, from the beginning of the trial, to now I gained about 6 lbs., I am now an unhealthy 245 lbs.

Another side effect of Firmagon is tiredness and fatigue. I think exercise helps with this, as I did not feel tired or fatigued much. Constipation is another side effect, I did have that, but I kept it at a tolerable level by taking MiraLAX every now and again. Only the last few months have I had joint pain. It is minor, and I can not tell if it because I am not lifting weights like I used to, or maybe sitting a little differently now that I am working from home, maybe it is with a little help from Firmagon.

So, from what I read, less than 1% of the Firmagon recipients get Gynecomastia (an enlargement or swelling of breast tissue, tender to the touch). That was me! Again, not life altering, just mildly annoying.

All physiological benchmarks (liver, thyroid, white/red blood counts, etc.) looked good throughout the year. We will see about bone thinning results when I get the DEXA scan.

Lastly, the biggest effect was injection day! The actual injection, although very uncomfortable, was not the problem, it was the days to follow that were the problem. By the evening of injections day, I had a temperature of about 100, that continued though the next day. I would go to work feeling crummy. By the third day my temperature would be pretty much back to normal. By this time the injection site would be very red and there would be a hard, small lump, it would even hurt a little when the shower water hit it. Then, by day 4 or 5, it would still be red, but it would not be tender anymore. So, there you have it in a nutshell, my side effects throughout the year.

Keep Calm and Fight On

03/25/21: Post AFT-19 Trial

Had the last shot in June, that shot lasted until July, by December my testosterone started to rise, along with my PSA, 0.10, by February my PSA was 0.50.

It was a nice run, but short, really only 6 months, wish it was longer, a lot longer, but here I am. I hit the magic number greater than 0.20, and I took the required final tests for the AFT-19 study.

My CT and Bone scan results for both were, no evidence of metastatic disease.

Below is a chart of my testosterone level and PSA throughout the trial. The PSA values follow the testosterone values. Not surprising, but interesting to see it in a graph.

So, now I wait! My next PSA test is in May, then again in June. When it gets high enough, I will get a scan at Mayo. I will say it was easier getting a shot every 28 days and knowing the cancer would be suppressed, you could kind of forget about it for a while, status quo. Now it is going to be, watch it go up then see what the effects of radiation are. One step at a time.

In the meantime, spring has sprung! Thanks to having a “underlying health condition” I revived the COVID-19 shot early, Whoo! I am planning on biking with my wife a lot this summer as I retired last October. Looking forward to getting more exercise and getting in better shape.

"We can't do anything about
the length of our lives,
but we can do plenty
about its width and depth."
Evan Esar

10/22/21: Decision time
May PSA 1.00
June PSA 1.50
August PSA 3.00
October PSA 5.90

On October 5th I had a PSA blood draw and a CT scan. You know you have done this one-to-many times when you know the check in procedure, and you do not have to be told where the imaging department is at United hospital. The results of the scan were:

IMPRESSION:
No evidence of recurrent or metastatic prostate cancer in the chest, abdomen or pelvis. No substantial change since 03/04/2021.

So, PSA doubling every two months, CT scan negative for any signs of cancer.

A fork in the road...

Option 1: Start Androgen Deprivation Therapy (ADT), most likely Lupron. This is the easiest and less scary route. Since I tolerated Firmagon fairly well, I have no reason to believe I would not tolerate Lupron just as well. This would give me 2-5 years of a stable PSA, although it does come with side effects. Sooner or later cancer will beat Lupron, and then it would be time for a more aggressive treatment, mainly option 2.

Option 2: Go to Mayo in Rochester, get a Choline C-11 PET scan, see if anything turns up. It could turn up nothing, one spot or many spots. No spots, go on Lupron, one spot, maybe surgery or a combination of radiation and Lupron or radiation and a chemo drug. Many spots, chemo therapy. This is the aggressive, find it and kill it way.

Things to consider: I recently retired, would like to enjoy some vacations. I hit the exercise hard, joined Lifetime Fitness, I go to fitness classes, do cardio, do weightlift on my own, and attend Yoga class, I know Yoga! I tolerated my one year on Firmagon well.

So, cruise along for 2-5 years, then get aggressive, or get aggressive right off the bat?

I ask one Doc and he said I should do option 1; "At this stage, do not go looking for trouble", "the time for scans and such will come all to quickly", and "you don't want to go down the whack-a-mole road yet". The whack-a-mole road being scan, treatment, mostly likely recurrence, scan, treatment, rinse repeat.

The other Doc wants to do the deluxe treatment, scan, hopefully find something, then remove it, radiate it and use a chemo drug. If possible, attack it with everything in the toolbox that makes sense.

Either doc could provide me with any statistics that one path has a better outcome than the other. It is a crap shoot.

I chose, wait for it...... option 1, I would like to get a few years of good retirement under my belt before I go down the radiation / chemo route. If I could be sure that the radiation / chemo route would provide a better outcome, I would it, but the Docs can't. I know this is a 180 from my previous posts, but circumstances change and some learning happened.

What I am Thankful For: My wife Dawn, family support, the summer off ADT, biking, exercising, friends. I know it is not quite Thanksgiving but you should always be thankful.

The challenge ahead: Winter is coming to Minnesota, a time to hunker down, beef stew and soups, less walks, less outdoor activities. So now it becomes extra important to go to the gym and try to fight the osteoporosis, hot flashes, weight gain and fatigue that Lupron can bring.

The Plan: So, I will receive my first Lupron 3-month (22.5mg) intramuscular shot on November 8th. So, the cadence going forward will be a PSA blood draw and a Lupron shot every three months until it no longer works or I want to take a Lupron holiday.

Now the fun begins. (Between you and me, not really looking forward to this!) I will write again in 3 months and tell you how I am going.

I went to the John Wayne museum in Winterset Iowa this year and bought a coffee cup with this quote from "the Duke"...

“Courage is being scared to death, but saddling up anyway.”

― John Wayne

09/08/22: Eligard Did Not Work to Well, Next Treatment Plan
11/08/21: PSA 5.90 | Start Eligard
02/08/22: PSA 1.40 | Yippee
04/29/22: PSA 2.30 | What the heck
06/14/22: PSA 4.10 | Testosterone level 10
07/22/22: PSA 6.00 | Doubling Time 2.5 months
08/22/22: PSA 10.40 | Doubling Time 2.3 months
09/07/22: PSA 10.30 | On to something new

I would like to applaud the people who have read this far in my story. You have read six years' worth of struggle and decisions. I am just preparing you; I plan on living another 35 years, this story is going to make "War and Peace" look like a short story! Yes, even with my current results!

Now on to the results. As you can see from above, my starting number this time was 5.90, and after the first injection it went down to 1.40, decreased by 4.50. In March I left for Tucson, AZ for a month doing the happy dance. My next blood draw was in April, my PSA went to 2.30, up 0.90, not exactly the direction I was expecting. So, we decided to do a PSA check midway between my next Eligard injection. After the results came back, a PSA of 4.10, Dr. Ducker scheduled a CT and Bone scan, this is the fifth round of CT/ Bone scans since I started this journey. At this point I was a little worried, I was sure they would find something this time, did I want them to find something? Well, they did not find anything; CT scan "No convincing evidence to suggest metastatic disease" and bone scan "No definite evidence of skeletal metastatic disease." Next PSA check was in July, PSA of 6.00, doubling time of 2.5 months. Eligard did not get my PSA to undetectable, not even once!

While all this was going on, I joined an online support group, AnCan (Answer Cancer Foundation). It is a virtual support group from people all around the country. This foundation has support groups for many different types of cancers, prostate cancer being one. I mention my current situation during one of the meetings they encouraged me to seek a second opinion. So, I made an appointment with a doctor they recommended in the Twin Cities, Dr. Emmanuel Antonarakis from the University of Minnesota. Here is the plan forward as suggested from my primary doctor, Dr. Ducker and from Dr. Antonarakis, the second opinion.

Consult with Dr. Ducker (Minnesota Oncology); recommended treatment plan:
Stay on Eligard (Leuprolide Acetate) and add Xtandi (enzalutamide), Xtandi is an androgen receptor inhibitor. Then see if it helps my PSA goes down and for how long. Not sure what next steps are after Xtandi.

He suggested doing a Genomic test on my prostate cancer (St. John's Hospital in Maplewood still has a sample). This will / may help for future drugs that may be administered.

He did not think that the new Piflufolastat F 18 (Pylarify) PSMA PET Imaging test was right at this time as insurance most likely would not pay as my CT & Bone scan were clear. If there was some ambiguity in one of the scans, they might be convinced to do the Pylarify.

What is an androgen receptor inhibitor? A substance that keeps androgens (male sex hormones) from binding to proteins called androgen receptors, which are found in normal prostate cells, some prostate cancer cells, and in cells of some other tissues. Preventing this binding, blocks the effects of these hormones in the body. Treatment with androgen receptor antagonists may keep prostate cancer cells from growing. Examples of androgen receptor antagonists used to treat prostate cancer are apalutamide, bicalutamide, darolutamide, enzalutamide, and flutamide. Also called androgen receptor blocker and antiandrogen.

Consult with Dr. Antonarakis (University of Minnesota); recommended treatment plan:
Stay on Eligard (Leuprolide Acetate) and add NUBEQA (darolutamide), preferred, or XTANDI (enzalutamide), second preferred. He would not prescribe abiraterone or apalutamide. He mentioned the difference between NUBEQA and XTANDI was that the NUBEQA's drug molecules were slightly larger than XTANDI's and therefore not able cross the blood-brain barrier (BBB) causing brain fog. He prefers NUBEQA over XTANDI just slightly, reiterating the efficacy is about the same.

He suggested that I enter a clinical trial called "Androgen Receptor Directed Therapy on Cognitive Function in Patients Treated With Darolutamide or Enzalutamide (ARACOG)". It is a study of patient's cognitive function while on A) Eligard + XTANDI or B) Eligard + NUBEQA. This trial is a study of cognitive impairment of one drug over the other. If you get on arm "B" the NUBEQA is free of charge. The reason NUBEQA would be free is that the study is sponsored by the Bayer and Orion Corporation, makers of NUBEQA.

Pros: If I got on the NUBEQA arm, the NUBEQA drug would be free and the preferred drug.
Cons: If I got on the XTANDI drug, it would be the second preferred drug, I would have to pay for it and it may cause brain fog.
Neutral: If I get on the XTANDI arm, I would stay on the study. I would not go off the study and get NUBEQA independent of the study because my insurance will not cover the cost of NUBEQA and the drug would be cost prohibitive. NUBEQA efficacy is about the same as XTANDI.

Genetics and Genomics

Let us level set about Genetics vs Genomics

Genetics
Genetics is the study of the genes people inherit at birth, passed on from their family through the generations. This test is done by taking a blood sample. This would be most helpful to see if your offspring have any of these mutations.

Genomics
For Prostate Cancer genomic testing is done on cancerous tissue taken from the prostate in order to provide information about how your prostate cancer might behave. Genomics refers to an organism's entire genetic makeup (DNA)..
Advanced genomic testing is designed to help identify the DNA alterations that may be driving the growth of a specific tumor. Information about genomic mutations that are unique to your individual cancer may help doctors identify treatments designed to target those mutations.

We decided that Genetic testing would not be right for me as I have no biological offspring. Dr. Antonarakis said that Genomic testing should be done now before my cancer sample degrades to the point of unusable. He said the Genomic data may be helpful down the line.

Piflufolastat F 18 (Pylarify)
He did not think that the new Piflufolastat F 18 (Pylarify) PSMA PET Imaging test was right at this time as it would have no impact on the treatment he is suggesting.

The Decision and Why
Decision on treatment plan: Enter the clinical trial "Androgen Receptor Directed Therapy on Cognitive Function in Patients Treated with Darolutamide or Enzalutamide (ARACOG) aka AFT-47". Because; if I get the arm with darolutamide, all the better. If not, I am no worse off than I would have been because if I had a choice, I would have gone with enzalutamide, just because of the cost of NUBEQA out of pocket is expensive and efficacy rate are about the same.

The Randomization
I was assigned the arm with Eligard (Leuprolide Acetate) and XTANDI (enzalutamide), I was kind of bummed to be honest. But it is what it is.

The First Test
The Cambridge Neuropsychological Test Automated Battery (CANTAB). According to the press release "Is a highly sensitive, precise, and objective measures of cognitive function. It measures Attention & Psychomotor Speed, Executive Function, Memory, Emotion and Social Cognition." It is an online test, took about 45 minutes.

The Start
At the University of Minnesota, I did more labs, and took a few written tests:

Performance Status Scale from the Eastern Cooperative Oncology Group (ECOG).
Tracks patient's ability to care for themself, daily activity, and physical ability.

Functional Activities Questionnaire (FAQ).
Evaluates everyday Functional Activities such as Shopping, writing checks, paying bills.

Functional Assessment of Cancer Therapy (FACT-Cog).
Assess perceived cognitive function and impact on quality of life in cancer patients.

Functional Assessment of Cancer Therapy-Prostate (FACT-P).
Questionnaire used for assessing the health-related quality of life in men with prostate cancer.

Patient Health Questionnaire (PHQ-9).
Determines the severity of the depression.

Medical Outcomes Study (MOS-Sleep).
Evaluates "sleep disturbance," "somnolence (state of being drowsy)," and "quantity of sleep/optimal sleep"

I also must log my Xtandi intake every day.

Wrap-Up
Started this new therapy on Sept. 7th 2022, I will let you know how it goes. Like I said at the beginning; War and Peace will be a short story

09/09/22: COST: Comprehensive Score for Financial Toxicity

COST is a questionnaire measuring the economic burden, and describes the financial distress experienced by cancer patients.

I would like to talk about something that has nothing to do with cancer,
but has everything to do with cancer.

Yes, it’s a thing, they measure it just like your PSA or Testosterone levels. Some of my readers may relate to this story. As previously mentioned, I was prescribed Xtandi for my cancer treatment. Xtandi is not an optional drug, it is not a men’s multi vitamin, it is the next step in my cancer treatment, the drug that will extend my life. I am retired, and two years away from Medicare. My first research into to Xtandi was that the cost was $13,698 per month or 164k per year. That does not include my insurance premium of over 8k per year and the 8k deductible before the discounts kick in. I then learned that when I put the Xtandi through insurance, it would be only $15k per year, just for the Xtandi. This would not cause financial ruin, but it would take a large chunk out of retirement savings that I was not counting on.

There was a week or so that I was in contact with my trial nurse and the University of Minnesota Pharmacy looking at options to pay for Xtandi. This was a very stressful time. I was not worrying about the cancer, but about the cost of the drug to keep me alive. After a few days, a contact at the U of M, an Oncology Pharmacy Liaison, informed me that my insurance co-pay, would be paid for by the "XTANDI Patient Savings Program." So, I will be paying $0 for the next year or so. It is a sad commentary that the U of M hires a group of people whose sole purpose is to get people the drugs they need at a price they can afford.

I large brick was lifted off my shoulders. One less thing to worry about. The quality of my life just got a little better! The financial burden of cancer feeds into your mental state, along with the worry of drug side effects, doctors’ appointments, labs, tests, and worrying about life expectancy.

I would like to talk about something that has nothing to do with cancer,
but has everything to do with cancer.

09/13/22: Exercise, Nutrition, Family and Friends Support and Other Ramblings Redux

Exercise: If I had to grade myself, I would get a “B.” In April of 2019, I gave myself a “D”, a marked improvement. I now walk a 4-mile loop around my neighborhood twice a week, I go to Life Time Fitness classes about two or three times a week, and go to Life Time Fitness just to use the weight machines. It is easier when you are retired. I take mainly strength / balance classes and yoga classes at Life Time. You should see my tree pose!

Food Intake: I would give myself a “B- “, same as in April 2019. Still eat mainly organic meat, drink more tea than coffee, sugar intake is low, fish and vegetable intake is also low, still working on it. But overall, I eat pretty good.

Mediation and Positive Thinking: Mediation I get an “F.” Yoga is as close as I get. I still believe mediation would be very beneficial in healing the body, I just cannot get there yet. As for positive thinking, I was always the glass is half full type of guy. I never dwell on the downside too much; life is too short.

In Summary: Exercise, Food Intake, Positive Thinking are a must to keep your body feeling good and your mind clear. I said that in 2019 and it is true today. Also, just as true from 2019 is that doctors should immediately put you in touch with a dietitian and life style coach. With that said; after nine to twelve months on Xtandi it will be interesting to see how well I maintain my exercise and food plan.

Family and Friends Support and Other Ramblings: Again, the support from friends and family has been overwhelming. My wife, still, updates my brothers, nieces, cousins, and friends via email. Friends and family still call or text before major tests and procedures to let me know they are thinking of me. I would like to specially thank my wife who keeps track of and pays all the medical bills, which takes a burden off my shoulders. And I cannot say it enough, I do truly appreciate all the prayers and well wishes from my kids, friends and family.

THE BODY ACHIEVES WHAT THE MIND BELIEVES

01/19/23: 100% Blocked Left Anterior Descending Artery (LAD)

Whoa, slow down their cowboy, that is not a cancer title!

I always thought someday, many years down the road that cancer would eventually catch up to me, but now I am not so sure. Here is a side story, a plot twist if you will.

My wife and I spent a wonderful 22 days driving around Montana and Wyoming. We visited Glacier and Yellowstone National Parks as well as the Grand Tetons. We visited 3 different friends we have not seen in over 40 years. We had a wonderful time.

Two days after I got home, my wife, and I were taking down a ceiling fan in her sewing room and putting up a brighter LED light. After it was installed, I felt a tightening in my chest. I took a shower and shave hoping it would go away. It did not go away, and then I became clammy. Dawn, then took me to the ER. The waiting room was packed, but when you say you have an elephant sitting on your chest, you go to the head of the line. Here they put a port in my hand, put EKG patches on my chest, and put Nitroglycerin under my tongue. They said they do not have the facility's here to treat me, so I was loaded into an ambulance and sent to M Health Fairview Southdale Hospital. I was rolled into the Cath Lab where 5 people were waiting. One nurse said I should relax and that they are like an experienced pit crew. There was no HIPPA papers, or admission papers to sign. It was just time is of the essence and let's get to work. Dr. Steven Heifetz was talking to me, two people were pulling down my sweat pants, another was shaving my groin area. People were putting more patches on me. The doctor was telling me that they were going up though the groin and to the heart and unblock my artery. Then things got foggy. I heard things in the background, but I really did not follow anything. The next thing I remember is being wheeled down a hallway and the nurse telling me to lie still. So, I watched the ceiling tiles go by. I was then put into a hospital bed, again being told to lie still, on my back. Then I heard Dawn come in. We chatted for a while, then she left as I was still groggy.

Once the sedative wore off, I was wide awake. I chatted with the nurses and such. So, what I had was:

"100% thrombotic occlusion of mid-LAD s/p successful PCI of mid-LAD with
Synergy 3.00 x 32 mm drug-eluting stent"

Translation: My Left Anterior Descending Artery (LAD) was 100% blocked. The critical blockage in the artery stops all the blood flow to the left side of the heart, causing the heart to stop beating normally. If it is blocked, the heart can stop very fast, which is why this type of heart attack is called a "widowmaker." Then they put in a Synergy brand stent coated in an anti-rejection drug.

My wife, Dawn came back later that day; I was talking and alert. The room was a single room on the Cardiac Unit on the second floor. After Dawn left a nurse came in and took out my IV, and unhooked me from the EKG unit attached to the machine and put a portable one on me so I could get up and move around. I had a full hospital dinner. At midnight they woke me up to draw blood, then at 3am they took vitals, then at 6 am they drew more blood.

On Sunday Dawn came to visit, I watched football, and I walked around the Cardiac Unit floor. A rehab guy came and had me walk the treadmill for a while. I was feeling strong, no elephant on my chest. Dawn went home and I had dinner, watched more football, and walked the floor. And again, at midnight they woke me up to draw blood, then at 3am they took vitals, then at 6 am they drew more blood. Monday Dawn came, I had physical therapy, I walked the treadmill again. I was released at 1pm with the standard heart attack "cocktail" of medications.

Aspirin (ASA) 81 MG EC tablet - Keeps platelets for sticking to stents

Prasugrel (EFFIENT) 10 MG Tabs tablet - Keeps platelets for sticking to stents

Lisinopril (ZESTRIL) 5 MG tablet - For High Blood Pressure (ACE inhibitor, relaxing blood vessels)

Metoprolol Tartrate (LOPRESSOR) 25 MG tablet - For High Blood Pressure (beta blocker, blocking the action of certain natural chemicals in your body, mainly adrenaline. This effect lowers the heart rate, blood pressure, and strain on the heart)

Rosuvastatin (CRESTOR) 20 MG tablet - Cholesterol (statin, help lower "bad" cholesterol and fats (such as LDL, triglycerides) and raise "good" cholesterol (HDL) in the blood)

Eleven days after my heart attack, I had an appointment with Dr. Antonarakis to get my 3-month Eligard shot and he noticed in my Comprehensive Metabolic Panel that my AST was 135 and my ALT was 336, both should have been from 0 to 50. These two indices indicate liver damage. He told me to stop taking CRESTOR as that medication is known to cause liver damage.

So, six weeks after I had my heart attack, I had a follow-up with Liz Lewis. She is a Nurse Practitioner with a Cardiology specialty, working under Dr. Heifetz. She said she was going to do some research about Xtandi and any conflicts with the heart medications I am taking. She also ordered an echocardiogram.

The echocardiogram medical summary:

There is mild to moderate anterior, septal, and apical wall hypokinesis.

Left ventricular systolic function is normal.

The visual ejection fraction is 55-60%.

The left ventricle is normal in size.

Doppler interrogation does not demonstrate significant stenosis or insufficiency involving cardiac valves.

Liz Lewis summary:

Good news, your heart pumping function has improved to normal at 55-60%.

I have had a few more blood draws since and all came back with normal AST and ALT values. Liz put me back on CRESTOR but at a very low dose, 5mg, not the original 20mg. We will see how this goes.

So, I now have two “ologists,” a cardiologist and an oncologist.

Yup here it is:

Just Because Someone Carries It Well,
Doesn’t Mean It Isn’t Heavy

7/21/23: Eligard & Xtandi Update (got to love charts)

Current: PSA: <0.01 (Undetectable); Testosterone: 16 ng/dl

Currently having a few more hot flashes than before, very little fatigue. I still go to the gym 5 days a week and either workout, go to classes or do the elliptical machine. I truly feel that exercise helps with all the side effects of ADT. I joined the AnCan support group and Man Up To Cancer and The PC Tribe Facebook pages. These outlets help me talk face to face, via zoom mostly, about my journey, get some things off my chest. I hope “Undetectable” continues until I am 85, but realistically, things will go south years before then.

“If you can't fly then run,

if you can't run then walk,

if you can't walk then crawl,

but whatever you do

you have to keep moving forward.”

― Martin Luther King Jr.

April 1960

Spelman College

08/22/23: Thinking…

About cancer… thinking. How often do you think about your cancer? Hardly ever? Once a week? Daily, when you take your meds? Frequently, when you get a hot flash or your joints start to ache?

When I was on the AFT-19 trial in 2019 / 2020, I thought about it roughly one week in 28 days. A few days before the shot and a few days after. My PSA was down, I had few if any side effects, I was blessed. I was cruising. So now I take Xtandi daily, cancer is more in my face, a constant reminder. I went from a every 28-day shot to a three-month shot, to daily pills. Every 30 days I must make sure I get a refill so there is no break in med continuity. It is slightly more stressful than just going to the doctor and getting a shot. The meds are a daily reminder of my cancer. Since I have few side effects, Xtandi is the cost for living, I take them and get on with my day. There may be a time when all the meds catch up to me and the side effects will be a constant reminder, but for now it is one day at a time.

Thinking… about cancer… thinking.

12/20/23: Update (PSA 0.03) Here we go again!

Soon after I started the Lupron and Enzalutamide cocktail my PSA went to <0.01, undetectable. That was in February of 2023. In December of 2023 my PSA was recorded as 0.03. A very small rise, not even a pattern yet, just a small uptick, barely a blip. This uptick worries me a lot as the Lupron and Enzalutamide cocktail should have lasted me years. You should have not seen an update to this blog for years! I do not want to jump to conclusions just yet, but it seams like the cancer learned to beat the Lupron and Enzalutamide and the low testosterone environment. My oncologist, Dr. Antonarakis, told me to take a deep breath as his cancer fighting toolbox is far from empty. So, I am going to take a deep breath, and enjoy the holidays, family, and friends. Sometime in February I will get another PSA test.

Don't waste the time. Time is the final currency, man. Not money, not power - it's time.

--- David Crosby 1941-2023

Peter's e-mail address is: pjgudel AT gmail.com (replace "AT" with "@")