I started having urinary problems (going to much, slow stream and some pain) about the first of February. My clinic called sent me a postcard in the mail saying I should get a 50 year old physical exam so I did.
The blood work came back good except for my PSA test which was 94. The PA at the clinic told me it may be just a false positive and he had me do another. A week later it came back a 94 again so he called me in and told me he was gonna schedule me to see a Urologist. In the meantime, he had me do an ultrasound, urine tests and more blood work. The urologist appointment was a month away but he called my PA and told him to put me on two weeks antibiotics in case it was an infection. I took two weeks of Cipro and went in for another PSA test.
This one came back at 84 so I went in to see the urologist and he did the digit rectal exam and said all felt OK. He also said my PSA was way too high and I would need to do a biopsy. One week later I was in his office to do the biopsy.
Four days later, 11 April 2011 I got a call from him and he asked me to stop in but I was on my way somewhere so he asked me if I wanted to hear the news and I said yes.
He told me I had prostate cancer and that my Gleason Scores were 8s and 9s and 10 of 12 samples were cancerous. I haven't seen any report yet but last week, 12 April, I went to another hospital to do a CT scan, and two days later I went do a different hospital that had a bone scan machine. My next appointment is on Wednesday the 20th of April, 2011 and he told me he would probably have all the test results in time to let me know what the next step is.
I have since become a member of HealingWell.com and I must say my cancer seems to be very aggressive compared to theirs (all the other prostate forum members) Most have Gleasons of 6 or 7. My PSA is very high also.
At this point, I am just trying to get educated on this disease and getting myself ready for the big fight.
I will post an update on 20 April and keep this going until I need to. Looks like a great place to learn from fellow PC members.
Later for now, Chris
Later: Well, went to see my urologist on the April 20, 2011 and he gave me some options.
The bone scans came back negative and CT he said looked good but there were some rough/blurry spots on my seminal vesicles he wasn't sure about. He also said they found a small spot in the bladder and said that may need to be looked at.
He also told me he was going out of practice or leaving the State and was informing all his customers. He referred me to a Dr. Joseph at the University of Rochester who supposedly has done over 4,000 robotic surgeries and has done much research on the topic. He says he's the best in Upstate NY at doing the surgery. It is a five hour drive away so I may get the surgery done there but do follow ups at Watertown NY.
We will see how things get covered. He said nothing about follow on treatment but said radiation is a good possibility and will know more after the surgery of what may have spread.
I'm still waiting for a call from my new Urologist at this point.
Will keep you updated,
Well, its been a little bit of a journey with doctors and insurance.
I initially was seeing a urologist in my home town where I was referred. He did the biopsy but I found out he was leaving the state and was closing his practice.
He referred me to Dr. Joseph in Rochester because of his experience with the robotic surgery. I was set to see him on May 12, 2011 but I got a letter from my insurance with another local urologist to see so I called them up and they told me Dr Joseph was not in the network. I saw the guy in Watertown and he told me he also recommended surgery and that his office only did open surgery so he referred me to doctors in Syracuse. I found out they were in network and got to see him on 6 June, 2011. He says he's one of the best in the business at doing this surgery but after he looked at my files, he told me surgery may not be my best option and asked me if I wanted to walk over to see a radiation oncologist. He told me there was a 93% chance it was already outside the gland and that surgery was not the best option so I felt this coming from a top Urologist meant something as most urologists prefer surgery. Then I talked to other people at the clinic and they said he was the best in the state at prostate cancer.
So now I am scheduled to get gold markers put in on July 11, 2011 and then will go in for MRIs and more x-ray work on the 18th. Shortly after that I will receive nine weeks of IMRT (Intensity Modulated Radiation Therapy), and they want to get me into a clinical study for a hormone therapy that I guess is new and doesn't give you side effects the others do. I have a 66% chance of getting in on it.
I guess they will even give me 30 dollars a day for gas money and its completely free. I believe its called GTX or something. I can't remember because the lady that specializes in these studies said it fast but it was 3 letters and I couldn't find it on the net anywhere so maybe its brand new. If it doesn't kill all my testosterone they will go to the older proven stuff but this new stuff doesn't give you extra weight, no hot flashes or other symptoms. Hopefully I will get it approved. have to wait and see.
I find it amazing how my first three doctors felt surgery was the best option but I now know they were in it for the money, or just not very smart on the topic. This is all I have for now for at least a month and will update later.
Well, it's been a while and I heard this site was down so I didn't post. Just a brief update.
After going through 3 Urologists, I found a good one I trust and he recommended Radiation/HT. I started IMRT in August and finished 45 treatment sessions on the 4th of October. I am also part of a clinical study and was hoping to get GTX but got Lupron instead. Just the way the study went. They were testing GTX against Lupron so I was the lucky one to get Lupron.
No side effects from the radiation. Maybe a little bowel change but not much and only once or twice. The Lupron seems to be working well. Had my first shot July 13th and my PSA went from 94 to 52 to 18 to 4.1 and my last reading was 1.9. I've had lots of PSA tests done because of the study (once a week). My 1.9 reading was at the day 60 point and do not know day 90 yet, hopefully close to zero though. So the Lupron seems to be working well.
As far as side effects, I seem to get dizzy, light-headed and have even passed out a few times. I fell down a flight of stairs after blacking out and they found me unconscious and went to ER. They did Brains scans, Neck ultrasounds, Nuclear stress tests, blood work, and several EKGs only to say nothing was wrong with me. They said I had sinusitis and gave me 5 days antibiotics but didn't do much. My clinical study Dr. told me this had nothing to do with Lupron but I read on the internet a small amount of people do get dizzy and black out. Who knows. I think they were wiping their hands clean of it all.
Any way, went back in to see my regular Dr. and hes sending me to get my eyes checked and to an ENT for my sinus issue. He seems to think this is the cause of my lack of sleep and dizzy spells at night. I hope so. These spells are pretty rough and I never know when they are gonna hit me.
I have my next Lupron shot on Nov. 9th and get my day 90 PSA results and Testosterone level. My last test. level was 8. Overall I am doing fine. Hardly any hot-flashes and no side effects from the radiation so I consider myself lucky.
Will send you an update later,
Well it's the start of a new year and the journey continues. Not really much to update on and I'm now in the Hurry up and wait mode.
My dizzy/blackout spells have stopped and I seem pretty normal at the time. I completed IMRT on the 4th Of October and so far so good. The Lupron seems to be doing its job as my last PSA reading was 0.6 I will finish my clinical study in July for the Lupron/GTx experiment and am hoping to stop the Lupron at that time although my Dr wants me to do 2 years but I will see. Maybe I will stop for awhile to see how it goes. Would really like to have that sex drive back. It's pretty much driving me crazy without it. I also seem to have days where I lack energy but not too often and maybe just 1 day a week.
Not too much to update at this point but my PSA numbers and it's pretty much wait and see if the radiation worked. Later for now,
Hi, just came back for a quick update. My last PSA reading was .16 so it's slowly creeping lower and lower. Only side effects are from the hormone therapy and thats just some weight gain around the stomach and loss of muscle mass.
I have started an exercise program so hopefully I lose those extra pounds and get back in shape. No Hot flashes but at times feel somewhat tired or lack energy, about 1 day a week I feel this way. I was switched from Lupron to Elligard which is now every 6 months. Initially they wanted me on it for 2 years but I may take myself off of it in September. I will see how my PSA looks. My testosterone is still below 10 and am due my next shot in September.
I had surgery done for my ENT issues and can breathe and smell again as well as taste which is good. I don't seem to get any more blackout or dizzy feeling at night but every now and then I feel a little nausea at night. Still not sure whats causing that but I feel its the Hormone therapy.
Still getting good info and feedback on Healing Well .com in the prostate cancer section. Great website and would advise any guy going through this to check it out. Oldtimers a willing to help out and lots of experience there.
Overall I feel fine and am not scheduled to see my Uro and Radiation Onc. until September. Will send an update then, Chris
Well, I missed the last update but things are going pretty good at this point. My appointment with my Uro in September went OK but I was concerned my PSA going from .16 to .96 in a 6 month time frame was not good. The Dr. seemed concerned but he thought maybe this could be a radiation bounce and to wait and see what the result is in another 6 months. Everything else is good. No urinary issues and DRE was normal.
I do still get up at night if I drink right before bedtime, maybe once or twice.
I also do blood-work every 6 months at my home clinic. So essentially my PSA is checked about every 3-4 months, depending on when I schedule the lab work. This is to check all the other things like RBC and WBC and blood sugar. I was told that I am slightly anemic and need to eat more lean red meat and leafy green veggies like spinach. My PSA was very alarming to me as it was a 2.4 but it was a different lab so I really cant compare that to my lab in Syracuse. It does have me feeling uneasy though. Kinda nervous about my upcoming appt/PSA test with my Uro.
My next appt. is on 25 March, 2013 and will send an update then. Chris
Well, been a while since last post and lots has changed. My last post I had told you my PSA had gone from a .16 to a .96 which concerned my URO and he said possibly a radiation bounce and wait 1 month and get PSA checked again. So a month later I went back and my PSA was 232. My Uro immediately scheduled me to see a Medical Oncologist, which is the first time I've seen one. I must say if I had to do it all over again I would have gotten a Med. Once involved early on in the fight, but I chose not to.
Anyway I got a quick appointment 10 days later, and my PSA checked that day had gone up to a 381. WOW! quite a raise in so little time. Prior to the appointment he had me do another bone scan and discussed the results in the appointment. He said I had widespread bone mets, to the spine, skull, neck, ribs, femur, hips and some on the shoulders, yet I was having no symptoms at all.
He felt the best option for me was to hit it quick, because I was approved for a clinical study for Xtandi but the trial was 45 days down the road and he felt I needed immediate action and I agreed. I decided to go with Zytiga and Prednisone, my first PSA after the first 30 days was 114 which was great. The second one went down to a 52, then a 30, then 22, then 16.9 and my last was a 7.7
The Zytiga appears to be doing its job and the side effects are OK. I get hot flashes now, which I never had with just HT. And Ive gained weight because the Prednisone. Also extreme fatigue at times, but so far it's all tolerable.
I started having back pain on and off and wouldn't go away. My Med. Onc recommended I go back to see my radiation Onc and get radiation to the spine. Two weeks later after a few scans I started and had 10 days treatment, which went good and seems to have relieved the back pain a good deal. Still cant bend over much or lift stuff, also my back will hurt if I stand for long periods. I also filed for Social Security disability because I couldn't work without taking narcotics for pain and was granted 100% disability in less than 3 weeks from the day I first filed and hired a lawyer. Couldn't believe it was so quick. I also started a treatment for my bones called Xofigo (Radium 223) I've had my second injection so far and will have 4 more. Hopefully that will shrink the tumors in the bones even more.
My pain is tolerable, but I still have to take Oxycodone on a daily basis. It seems the pain is worse when laying down so I take some before bed each night. I hope to go back to work in the future but the SSDI really helps for now. I also cant seem to drive more than 45 minutes at a time or I get back pain. I must pull over and stretch out awhile. Ive been approved for Provenge by my insurance but I'm not a good candidate for it right now as I'm on narcotics and have symptoms. Am hoping to have that in my arsenal in the future though. Really don't want to do chemotherapy until all my options are used up, and my doctors all feel the same way. At this point I'm still seeing a Uro, radiation Onc and Med Onc, and they all talk to each other and share info which is good.
That's about all I have. Will send another update after I finish with the Xofogo, or if anything else pops up. Overall I'm doing good. The fatigue sucks and the pain when laying down but the treatment seems to be doing its job so I'm happy. At this point I've realized my sex life is on hold for a while. The Zytiga has wiped out all thought about sex or erections, and I can't have sex or exchange body fluids while on the Xofigo anyway. Just living each day to the fullest. Happy holidays all. I'll send another update after the new year. Chris
As I stated, I'd send an update after the holidays. A little late but not too much happened.
My PSA kept going down each month on Zytiga. Down to a 1.5 where it seemed to stay at for 3 months. It then went up to a 2.3 and my Med. Oncologist stated that Xofigo sometimes makes the PSA bounce up so lets wait and retest next month. Meanwhile I finished my 6th Infusion of Xofigo (Radium223). My PSA next month (Mar, 2014) went to a 3.9 and at that point my Dr. advised me I was due for my yearly Bone scan and CT scan so lets watch the PSA and wait next week for the scan results.
The CT scan came back negative, (nothing found). The Bone scan showed significant improvement of bone mets so it appears either the Zytiga or Xofigo has done its job. However that week I did another PSA and it's now 5.0, which my Dr. said no doubt somethings going on even if the scans don't show it. So I will be seeing him about some future options next week. We had talked about Xtandi or Chemo. Not sure which one he's leaning towards. I'd kinda like to go with Xtandi first if possible, but we will see. He seems to think I can get the full chemo (taxotere) every other 3 weeks instead of the once a week infusion, so maybe that's my next course of action.
After failing initial treatment of IMRT and going hormone refractory in 18 months. I realize I'm fighting a bear. I still take Elligard for HT even though I'm Hormone refractory. It looks like I got 1 year out of Zytiga and Prednisone, so we'll wait and see whats next. Be nice to get 4-5 years out of the next treatment!
Well, here it is June of 2015. Been over a year since I last updated so here's a quick update.
After my PSA started climbing on Zytiga. My Dr. switched me to Xtandi. I saw very little success with Xtandi. It did stop my PSA from increasing for 3 months but didn't lower it. After 3 months my PSA went back up to 50.
I did a new set of bone scans as well as a Pet scan and no real change from last scan. Still some visible mets to ribs and spine but no increase from last scan. At this point, My Dr. recommended 6 rounds of chemo (taxotere). I also was scheduled to do another round of Xofigo as part of a clinical study which would have given me 12 total infusions. I ended up getting 3 of them and was then no longer eligible for the study because the chemo would invalidate it, so I did 3 and stopped.
After 6 infusions of chemo, the effects have been not as good as I hoped. My PSA is still at 50. It hasn't changed at all in 6 months. It's not going up which is good but I was hoping for a significant drop which I never had. I am currently on Lupron every 3 months, Chemo every 3 weeks, Xgeva every 4 weeks and receive shots to boost my red blood cell and WBC counts at each chemo date. I have become anemic from the treatments and my immune system weakened.
Side effects have been OK. Have occasional nausea at times and my energy level is Zero. The chemo has also caused the pain in my back to get worse so I increased my Oxycontin levels. I have a very hard time bending over repeatedly. That's the worst part.
I had a good talk with my Dr. 2 days ago and we talked about the future or next steps. He stated after chemo, depending how long it works, I will have to start looking at clinical studies as I've used everything else already. The only 2 things I haven't tried are surgery, which was gone the day I decided to go with IMRT and Provenge. I was actually approved for Provenge by my insurance but the Provenge Dr. won't give it to me while on narcotics since thats against the company guidelines of the drug. I have to come off narcotics for I believe 3 months in order to qualify for it. So far I haven't been able to do that. At this point Provenge may be too late in the game since I'm already doing chemo. Other than that, I've tried IMRT, Lupron, Xofigo, Zytiga and Xtandi. He mentioned to me that there's a chance I can try Zytiga and Xtandi at the same time, and he had 2 clients who had good results doing that. Only problem is the insurance may only cover one drug. Not sure I can dish out 6 to 9000 dollars for some pills. But luckily I do have an unopened bottle of Zytiga left over and 26 day supply of Xtandi left over so I could be good for 1 month. I haven't done much research yet but will be soon, at any possible studies coming up I may be able to jump in on. Will keep you posted, Chris
Well, it's been a while and time for an update. Unfortunately this ones not so good. I've been on chemo for the last 18 months or so. While chemo wasn't doing great, it did keep my PSA stable at around 50 for quite some time. Then about 2 months ago, my PSA shot up to a 167, then a 191, then a 209 and my last one a 372. My Medical Oncologist stated chemo was no longer doing anything for me and it was time to stop.
So at this point I'm doing just Lupron and red blood cell shots. During the holidays, I was having extreme pain in my left hip/leg. After Xrays, I found out I had broken my femur. Guess the cancer had eaten thru the bone and caused it. I had a rod put thru the bone down to the knee and that has greatly reduced the pain. I still walk with one crutch but the pain is now tolerable. I feel the same thing may be going on with my right shoulder/arm. I'm having extreme pain there now. :(
My Oncologist said some men had success trying Zytiga and Xtandi together, and I just happened to have a months supply of each left over. So I am currently doing 2 Zytigas and 2 Xtandis each day with prednisone, because I want it to last 2 months. I see the Onc. in 2 weeks so we will see if I had any improvements. Hope so. Unfortunately, insurance won't cover both drugs at this point so I have to use what I have left. I'm not sure if insurance covers one drug or not since I've actually already failed both drugs, but if I see improvement I may see what I can do to buy a bottle, and hopefully the insurance will cover one of them.
My radiation Dr. is also radiating my left hip at this time and hes enrolled me in clinical trials, or at least has my name in the database and if something comes up I'm eligible for, he'll call me.
My Med. Onc is doing the same and has enrolled me in Roswell in Buffalo. I'm also looking at Walter Reed and am searching the clinical studys.org myself online. Unfortunately chemo disqualifies you for many clinical trials and studies. Well, gotta hope something comes up because my PSA shot up from a 209 to a 372, not good. My bone scans I just got back show no real increased uptake so not sure where most of it is. The picture is looking bleak I must say, and for the first time in 5 years, I'm scared. More scared of leaving my 48 year old wife alone than of dying. It's been a very hard week for me. My wife does a very good job of hiding her fears but I can see she's scared as well. I love her so much and cannot picture leaving her alone, and with both my sons away in the Military, they won't be there to support her. Im hoping and praying for a miracle at this point. Thats all I have for now. Goodbye.
Christopher's e-mail address is: firstname.lastname@example.org