This is Marilyn writing -- Marshall prefers that I do the typing. I took a guess at the staging because Marshall's diagnosis was "Stage IV with mets to the bone." I don't understand the "T" stages, but I researched it and it seems like T4 fits. [Marilyn is correct - go to STAGING for basic information] I also don't know what "Sub-Treatment" means, so since Marshall was on Firmagon, then Lupron along with Xgeva, and about to be on Zytiga and Prednisone, I put ADT2. Forgive me if I misunderstood those categories.
Here's the chronology of everything to date:
On 03/14/12 went to emergency room with severe chest pain (turned out to be bone pain)
03/17/12 diagnosed with Stage IV Prostate Cancer (metastasized to the bones), PSA was 49
03/29/12 Biopsy confirmed advanced cancer, with a Gleason Score of 8, PSA had risen to 95
03/29/12 Received a double injection of Firmagon hormone therapy (very painful!)
Early April 2012, within less than a week, bone pain subsided, and he was out of bed!!
04/30/12, PSA had gone down to 9! Hormone therapy changed from Firmagon to Lupron (a 3-month injection) Side effects: fatigue & hot flashes
06/11/12, PSA now down to 3.9! Considering a clinical trial.
06/19/12, decided against the clinical trial because it was a blind trial and Marshall would rather be on a trial where he knows exactly what he is getting. Very scared.
07/10/12, lab work done at request of VA regarding Agent Orange claim.
07/12/12, evaluation by a private doctor at request of VA.
07/26/12, visit to oncologist. PSA remains at 3.9!!! Very good news. Bone strengthener postponed for 6 weeks. Next appointment 9/13/12.
08/6/12, VA approved Agent Orange-prostate cancer benefits; Marshall is now considered 100% disabled. This decision will be reviewed again in six months.
09/4/12, passed out, chest pain, pale, sweating, clammy, rushed to hospital by Flight for Life. Doctors were unable to find a cause, but it wasn't cancer related. Left the hospital 9/6/12.
09/13/12, PSA went up to 6.6 ... depressing. CT scan, bone scan and another PSA test scheduled for 10/11/12.
10/11/12, Bone scan showed no change from prior bone scan; CT scan showed slight increase in "activity"; PSA up to 10.01. Casodex is started as well as megadoses of Vitamin D2.
10/18/12, Excruciating back pain, thought it was a Casodex side effect; oncologist says it is not SE. Went to clinic, got x-rays of spine, showed nothing, maybe hairline fracture, got injection of "aspirin" and started feeling better.
10/25/12, Lupron injection; Xgeva injection; flu shot. SE from Lupron was pain at injection site for several days.
11/21/12, PSA 10.22, Xgeva injection.
12/17/12, Saw radiation oncologist for severe back pain in lower spine
12/20/12, 12/21/12, 12/22/12, first 3 radiation treatments
12/27/12, 12/28/12, last 2 radiation treatments -- back pain started to subside
01/01/13, called 911, stomach pain, taking laxatives per instructions of radiation oncologist. In hospital 3 days, diagnosed with radiation colitis. PSA 12.3. Colitis can't be treated, needs to resolve itself. Sent home 1/3. Advised that white blood cell count was low, get it retested. (Very upset that radiation oncologist prescribed "aggressive laxatives" and didn't even mention the possibility of radiation colitis, which we have since learned is common. Caused days of unnecessary pain.
01/07/13, went to primary care doctor for lab work
01/08/13, appointment at primary care doctor, white blood cell count heading back up but sugar very low and dehydrated. He was put on intravenous fluids for 40 minutes, felt better.
01/17/13, PSA 13.2, Vit D in normal range, Lupron shot, Xgeva shot, discontinue Casodex, white blood cell count almost back to normal after radiation.
01/28/13, went to emergency room with excruciating pain in right leg; no blood clot, no hairline fracture, no sciatica. Advised that fracture was imminent and to get wheelchair. (That emergency room doctor was VERY insensitive.
02/07/13, saw oncologist to get retested after emergency room visit. They do not agree that fracture is imminent and thought pain may be caused by withdrawal of Casodex. We go back on 3/1 for PSA test and discussion of clinical study of GTX (estrogen therapy) added to the treatment plan.
03/01/13, saw oncologist; PSA almost tripled to 31.06; started process to participate in clinical study for GTX-758.
03/04/13, not accepted in clinical study, blood-work showed "low threshold" for clotting (VERY VERY DEPRESSING)
03/05/13, oncologist wants Marshall to start on Zytiga.
03/06/13, tried to get Zytiga approved by Medicare but it was denied. (MORE DEPRESSION).
03/07/13, oncologist's office found pharmacy that will provide Xytiga for a copay of $200/month.
03/08/13, the pharmacy called and took all information from us and went over the dosage instructions for Zytiga; they will send the first shipment by UPS for delivery 03/11/13 and Marshall should start Zytiga & prednisone on 03/12/13.
That is our story up to today. For the past month or so, Marshall has been in lots of pain (right leg). Oncologist says Marshall's description of the pain, as well as all of the scans and x-rays, do not fit the profile for cancer pain. He said it is a real head-scratcher. If the pain persists after some time on Zytiga we will address it again. In the meantime, Marshall has finally found a "cocktail" that works on the pain. In the morning he takes an anti-nausea pill. Then 2 oxycodone along with 3 Advil and 4 Senokot laxative tablets. Then again in the evening. Sometimes a tranquilizer is added to this. This keeps the pain at bay and constipation isn't the problem it was. But it leaves Marshall groggy and unable to leave the house. We hope that improves.
Last month we also called The Scooter Store and got a power chair. That has made a difference in his freedom in the house. We are about to have ramps built outside (as soon as the snow goes away) so that he can go out on the deck and out to the car.
I will post later as to how he progresses with the Zytiga/prednisone treatment.
It's Marilyn again writing for my husband. Marshall started the Zytiga-Prednisone on March 12. For the first four days, his severe pain continued and he was on his oxycodone-advil-senokot regimen twice a day.
But on Day 5, the world started to turn around for us. He woke up on that Saturday (3/16) with almost no pain at all and made it through the day with just one set of pain pills. But lots of hot flashes and nausea. (He takes an anti-nausea pill every morning with the Zytiga to combat the nausea.)
Then on Sunday (3/17) he woke up with no pain at all and a bit more energy than he's had in a VERY long time. And Monday, again no pain, and we spent the whole day running around. Tuesday, Wednesday, Thursday and Friday, still no pain. Today he went out on his motorcycle and had a nice ride for the first time in many months. And we stuck the power chair in the back room for now.
There's no guarantee how long this miracle will last, but we are enjoying the heck out of it now.
Marshall has now had 16 days with no pain and his energy level, as well as his mood, have definitely improved. We have been able to go out and do the things we used to do.
He had his first "monitoring" checkup on March 26 and everything checked out fine. He had gained a few pounds and the doctor said that if he continues to gain weight, they may need to adjust the dosage of prednisone. We go back on April 8 for his second monitoring checkup and they will also do a PSA test.
We feel like he has gotten his life back. He is even planning a few trips this summer on his motorcycle. Planning ahead -- that's such a nice luxury.
Just wanted to let you know that yesterday (4/8/13), Marshall had his second monitoring visit to the Cancer Center since starting the Zytiga on March 12. All of the lab work was good.
But the best news yesterday was that the PSA is down to 10.23 from 31.06 !!!!!!
And still the only side effects he has had are hot flashes (a little worse than the ones he had on just the Lupron) and some fatigue. However, he keeps an energy level going all day long which is a far cry from the way he was several months ago.
Marshall has now been on Zytiga since March 12 and has remained pain free since March 17. It is like a miracle drug.
He has a checkup every two weeks and they monitor his liver function and kidney function, as well as calcium levels and certain vitamin levels. So far everything has checked out good. The oncologist now has him on 400mg of Vitamin B6 every day.
And the best news -- at our last visit to the Cancer Center (two days ago), Marshall's PSA had dropped to 5.1. What a cause for celebration.
In June, the lab work showed an iron deficiency, so Marshall started on 325 mg of iron sulfate every day. He is also still on 400 mg of Vitamin B6 every day.
In the past weeks, he has experienced nausea, varicose veins (causing leg pain), extreme & debilitating exhaustion, legs feeling like dead weights, hot flashes and petechia.
We've addressed these things with the Nurse Practitioner on our regular 2-week checkups and she said that all of these things are side effects of the various drugs and they will probably come and go and diminish over time.
He continues on Zytiga and is still pain-free -- which is just awesome. Zytiga is like a miracle drug for us.
At today's visit, his lab work showed that he was severely dehydrated so he had to be put on a fluid IV for several hours. This is the third time this has happened and she was a bit concerned. She stressed the need to drink LOTS of water. And she said that if he doesn't stay hydrated we will need to have a kidney ultrasound done to be sure there's nothing else going on. It's been pretty hot in Colorado these past few weeks so we are confident he just needs to up his water intake and reduce his coffee intake.
And today we also learned that his PSA is now down to 1.04 !!! Very exciting news for us.
For the past two visits to the oncologist, Marshall's PSA has been 0.88, which is excellent news.
However, he has developed leg pain (not bone pain, just leg pain), intermittent groin pain, coughing that more often than not leads to nausea, and EXTREME fatigue. He can barely do anything. We do manage to try to get out and go to lunch, but he tires so quickly that we don't stay out long.
We are going to see his primary care physician this week to see if there any drug reactions that could be causing any of these problems.
He is still taking iron pills for anemia and high doses of Vitamin D. His kidney function is still normal and he has been drinking lots of water so he has stayed hydrated.
Our next visit is October 7. I hope he starts feeling better in the next week or two.
Marshall saw the oncologist in October. PSA is now up to 1.28. The oncologist said not to worry at this point, because with Zytiga there can be a PSA "bounce."
Marshall continues to complain about sharp stabbing pains in his left knee and sometimes the knees totally give way. He has periods of deep depression. The oncologist said that 45% of men who are on Xgeva complain of the same symptoms as Marshall has -- nausea, bone and joint pain, fatigue, chronic cough and shortness of breath. So they are discontinuing the Xgeva for the time being.
The oncologist did a Chromogranin A-serum (CGA) test and Marshall's reading was 1,665 (normal range is 0-95). This test is supposed to detect whether the cancer is growing in spite of low PSA readings, so this wasn't a good reading. However, an elevated CGA can also occur if the patient takes a proton pump inhibitor (PPI), which Marshall does. But rather than stop the PPI and wait the two weeks for it to get out of Marshall's system and then do another CGA test, the oncologist decided to do a complete battery of tests NOW.
October 16 we went up to the hospital and Marshall had a CT scan, a complete bone scan and an MRI. It was such a stressful day. On October 21 he is scheduled to see a neurologist to see if there are any neurological issues that could cause the stabbing knee pains or the stroke-like symptoms that he gets periodically. Then on the same day, he will get lab work done again and then we will see the oncologist to go over all the test results and see what the next steps will be.
November 11 saw oncologist for test results. PSA at 1.2 and all scans show no advancement of cancer. Lesions are shrinking. Neurologist says that there does not appear to be any nerve problems as a result of radiation. So all is going well. However, Marshall is extremely depressed and the oncologist suggested he see a psychologist to try to conquer depression.
December 11 saw oncologist again. PSA went up to 2.1. All other tests normal. Oncologist says we should not worry about PSA as long as there are no other symptoms (like bone pain). Easier said than done. But Zytiga appears to continue to work for Marshall.
So we are trying to be calm and enjoy our Christmas. Our next PSA test is January 7.
On January 7, went back to cancer center for regular lab work. PSA has gone back down a little (from 2.1 to 1.58), so that was very good news.
The oncologist is still a little concerned about the CGA test and just to be sure everything is where we think it is, he wants Marshall to have a complete bone scan and CT scan again, so we go back on February 4 to get that done.
Also, they had taken Marshall off of Xgeva in October so that he could see if some dental work could be done. The two dentists we went to decided they did not want to take any chances and declined to do anything, so Marshall will just get a teeth cleaning and then they will start Xgeva again in February.
Marshall has been feeling good, although very fatigued. He still gets nauseous occasionally. But all in all, things continue to go well. We are so grateful for Zytiga.
Forgot to add that Marshall has seen the psychologist (who works with cancer patients) twice now and has had two consults on the phone. That is going very well. I was allowed to be in one session just to be sure that I understood everything that was going on with Marshall.
From my perspective, the psychologist has helped Marshall tremendously. The episodes of depression appear to have diminished.
Marshall's PSA has been staying right around 2. It goes up a little and then back down. We are very happy about that.
He is still seeing the psychologist once a month but probably should see him more.
He still has not been put back on Xgeva and not sure when he will. Oncologist says he doesn't think he needs it right now. Marshall is having denture problems and no dentist will touch him because of the Xgeva so we are searching for solutions so he can wear his dentures. He got a soft reline but that didn't really help.
He has had a few oxygen level tests and during the day his oxygen level is great but at night it gets pretty low. So he's been put on oxygen at night. That has boosted his energy level tremendously. He is still working with his doctor to get the right setting for the oxygen "generator" but he no longer uses his cane or his power chair so that has been just awesome.
March 17 was the two-year anniversary of his diagnosis so things are going well. The Zytiga continues to be a godsend for us.
We go back to the Cancer Center on April 7 for his monthly checkup. I will try to update at that time.
We went back to see the oncologist on April 7. All lab tests came out great, but the PSA went up to 4.6. The oncologist said not to worry, it is common for it to "bounce."
He suffered from a few bouts of depression, but the doctor raised his Venlafaxine from 75mm to 150mm and I think that really helped. Throughout April he continued to have nausea and vomiting and we really don't know why. He started taking his Zytiga in the middle of the night so that he could eat right away when he got up and at least he didn't have morning nausea any more (which sometimes meant he lost any medication that he took right before the nausea).
Our oncologist arranged a consult with a dentist who specializes in cancer patients and we are scheduled to see him May 21 to see if he can figure out a way to allow Marshall to wear his dentures again.
On May 15 we went back for the monthly checkup and the PSA is back down to 3.72. YAY! All other tests are in normal range again. We plan to go to Ohio for his 50th reunion so we will go on a "high" after this good checkup.
The oncologist wants him to have all the scans again just to be sure the lab work and the scans are still "on the same page." So we go back on June 19 for scans and lab work.
We saw the dentist and he believes he can make a set of dentures for Marshall that will work. We've been back to see him three times now and he is creating these dentures like they are a piece of sculpture. Very impressive.
We went for the scans and saw the oncologist on June 19. The PSA went up to 7.4, the CT scan showed no change, and the bone scan showed a new met in the spine. So the oncologist wants us back in one month for lab work and then two weeks after that he wants us back for repeat CT and bone scans just to be clear on where we stand.
He mentioned that the next step would probably be Xtandi but he said one of the possible side effects was seizures. I did a little research on that and even though the incidence of seizures on Xtandi is VERY small, it is advised that you stop driving or doing anything that could cause injury in case of a seizure. Since Marshall is a Harley guy, giving up driving would be tough. But we've made it through everything so far, we can adjust to this, too.
We won't really know more until end of July or early August.
Went back to oncologist on 7/17/14 and saw the nurse practitioner. PSA is now up to 9.4. Not a huge jump, but still, we would rather see it go back down! NP said not to get too concerned at this point. They want to do repeat scans (which are now scheduled for 8/12) so they can compare them to the June scans and we will go from there.
We talked about Xtandi and the whole possibility (no matter how small) of seizures and she said that further studies have shown that the seizures occurred in men who took their doses of Xtandi too close together. She said that if you take your Xtandi at the exact same time every day the seizure possibility disappears. However, she mentioned that they have quite a few patients who experience falls. But at least he will still be able to ride his motorcycle!
We see the dentist again on August 6 and he should have the dentures ready.
Marshall still has no pain, so that is a good thing. Stay tuned for the next report.
It's been a crazy few months. In August Marshall got all the scans done again and they showed that the cancer was possibly growing. PSA was rising. We had a trip to Europe planned so the oncologist told us to enjoy ourselves and see him when we got back. We did just that! Had a great time.
Went back October 14, 15 and 16 and had the scans done, as well as lab work. The PSA is now at 33.2 and the scans show cancer growth in the left hip, in an area where Marshall has been having pain. The first thing the oncologist wanted us to do was make an appointment with the radiation oncologist to get radiation scheduled for the left hip. (We go back on Monday to see the radiation oncologist.) Marshall had been having some really bad pains in his back and after describing the pains, the oncologist said those pains sounded muscular and not cancer related and Marshall should take oxycodone for a few days to see if the pain lets up.
Then the oncologist said to discontinue the Zytiga and that at this point we had three choices: (1) Xtandi, which he feels could cause a seizure or a fall and he said a broken bone would be devastating; (2) chemotherapy by infusion (docetaxel), which he feels would not be good for Marshall because he thinks Marshall has gotten weaker over the past several years and the IV chemo would make him weaker; and (3) chemotherapy by pill (cytoxan), which he said would be what he recommends right now. He also is going to lower the dose of prednisone from 5mg twice a day to 4mg twice a day.
So we picked up the cytoxan at the pharmacy on our way home. The pharmacist said to take an anti-nausea pill (Zofran) a half hour before taking the cytoxan to help avoid nausea. Marshall took his first cytoxan today. By mid-afternoon he was so tired he couldn't keep his eyes open. I guess the combination of oxycodone, Ativan and cytoxan would make anyone sleepy!
We go back on October 29 for more lab work to see if the PSA is responding to the cytoxan.
At our visit on October 29, the PSA had risen from 33 to 35. The oncologist thought that was a good sign that the oral chemotherapy (cytoxan) was working and that the PSA was going to stabilize and start downward.
However, Marshall has had severe pain and in early November he had spot radiation on his left side and in his spine. In the middle of the radiation treatments he had some REALLY SEVERE diarrhea and was hospitalized for two days while they tried to figure out what caused it. They really never figured out the reason so he was released and finished the treatments.
As I write this, it has been three weeks since the last radiation treatment and he still has the severe pain. The radiation oncologist said it could take as long as six weeks to see pain relief, so in the meantime Marshall is on 45mg of morphine every eight hours, with Dilaudid for the breakthrough pain. He is exhausted all the time and has been in bed for three weeks now and has no appetite so he isn't eating. He's lost 25 pounds in the past three weeks.
I called the oncologist to let him know and he said he wanted a brain scan to see if anything was going on in the brain to cause the fatigue and loss of appetite. We had the brain scan done yesterday (Dec 5) and we are back home waiting for results. Marshall is back in bed. He says he can get comfortable in bed but when he gets up the pain in his right side is severe and radiates around the back.
So stay tuned...I will update when we get results.
Well, the brain scan came back clear, no problems there.
Around the end of December, Marshall was hallucinating really badly and scaring me. He fell a few times and I had to call 911. He went to the hospital and from there was transferred to a nursing home. At the nursing home they evaluated his medications and they took him off of the Dilaudid which they believed was causing the hallucinations and the semi-comatose state he was in for so long. Within a day or two his mental functions were back to normal and he was doing much better. Within six weeks they sent him home.
But he still had excruciating back pain. All the other pains went away as a result of the radiation he had done, but the back got worse. The oncologist told us to stop the Cytoxan for now just in case it was causing the pain. So Marshall hasn't really been on any cancer treatment (except Zolodex) for a few months now.
We got to a point where he started losing feeling in his legs so he was rushed back to the hospital where emergency surgery was performed to remove a tumor that was wrapped around his spine. (His PSA while at the hospital was 40.) He was released in mid-February wearing a brace that he needs to wear all the time, except in bed, for a month or two. His back pain is now gone and he is basically pain free for the first time in a long time. He is getting physical therapy at home now.
But the surgeon said he also needed to get radiation on the spine in the area where the tumor was removed in order to be sure they get all of it. So 10 radiation treatments were started on March 2.
We also went back to the oncologist for a checkup and the PSA had gone up to 43. The oncologist didn't think that was too bad at all, considering that he hasn't been on any treatment except radiation. But he also said there are some small spots on the liver and we need to go for a full-body scan and a CT scan to try to definitively decide what's going on with the liver. Those scans are scheduled for March 11. The oncologist feels that it is getting close to time for chemotherapy (docetaxel). We will talk about that later this week, too.
Marshall has been so strong through all of this -- a real fighter. Stay tuned for more updates.
Marshall had his radiation in March and then had physical therapy to try to build his strength back up. He was doing really good but then more back pain entered the picture -- lower back pain. It got worse and worse and eventually we went back to the hospital for an MRI. There was another tumor wrapped around his spine, this time the lumbar spine. So he had another emergency surgery to remove that tumor. That surgery was June 19. His PSA went up to 64. After the surgery they fitted him with a heavy brace that he has to wear 24 hours a day for six weeks. It is very uncomfortable and hot but he is tolerating it.
He was still on Cytoxan (oral chemotherapy) and Zoladex and prednisone. After this second surgery, he had no energy whatsoever. They tell him he has to have more radiation on the lumbar spine to try to be sure to get the places that the surgery didn't get and they told him this radiation was riskier than the last one because of the proximity of the bladder, bowel and critical nerves. But because the cancer is so aggressive they recommend the radiation.
During the past month he also developed extreme pain in his right shoulder. A bone scan showed new cancer in the right shoulder and they recommend that he get radiation on the shoulder when he gets the spine radiation. So we went last week and he got "mapped" for the two radiation areas.
The doctor discontinued the Cytoxan and started him on Zytiga again. Marshall had Zytiga in 2013/2014 and it was a miracle drug -- took away all pain and for about 18 months things went well but then the Zytiga failed. However, the doctor says that in 25% or 30% of men, if they go off of Zytiga for an extended period of time, the body can reset itself and the Zytiga may work again. So Marshall started on Zytiga about 6 days ago.
He is also on morphine twice a day for pain. We are home now and he has been having memory issues and has mostly stayed in bed. He is supposed to get up at least once an hour and just stand for a moment or two.
Tomorrow or the next day we should find out what the radiation schedule will be. We hope the Zytiga will kick in. Stay tuned.
Marshall went into hospice -- here at home -- on July 9. I will keep you updated.
This is the final update on Marshall Mullins. After the last doctor visit -- and the visit to the radiation oncologist to get mapped for the spine radiation -- Marshall started deteriorating pretty fast. The medical oncologist said he would highly recommend hospice. But Marshall didn't want hospice, he wanted to keep fighting.
However, when we got home and started planning the trip back to Denver for the treatments, Marshall found it difficult to talk, he was unable to stand, and the pain was awful. So he made the terribly difficult decision to stop treatments and enter hospice.
He passed away on Wednesday, July 22, 2015. He was so brave.
