I feel like the past three and a half years have been rehearsal, and it's time for the big show. I will do the steps I have learned, and the result could be glory or disaster.
I made a big bet on this new treatment. When I didn't fit the profile, I asked the researcher to change the parameters so that I could participate. He did, but that required a lot of committee approvals and caused a long delay. It has now been ten months since I first spoke to the researcher about this trial. During that time, I avoided treatments that would disqualify from the trial, even though those routine treatments almost definitely would have controlled my cancer during that year. Instead, my cancer grew 3,000% and is now causing more pain than ever before. I now use a cane to stand and can't even roll over in bed without grimacing.
Today, I will get a Hickman catheter installed in my chest. Friday through Wednesday, I will receive chemo and lose my hair. Thursday, I will receive full body radiation, and the next day, I receive a bone marrow transplant. If all goes well, three months later, I start Bipolar Androgen Therapy (BAT). The first trial subject did well and his PSA is already going down. I am the second trial subject and the first with an unrelated donor.
My wife's aunt will take me to the hospital almost every day for the next month or two. We will spend a lot of time reading books while waiting for test results or waiting for the latest bag of liquid to infuse into me.
Ideally, I will have symptoms of a little bit of Graft Versus Host Disease (GVHD), but not too much. Thinking about the full process can be overwhelming. I find it helpful to just concentrate on today and think of this treatment not as a task, but as a new lifestyle, because it will be, for about 100 days.
Merry Christmas!
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Beauxman
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Getting into trials is not as easy as people think. I like you am waiting and advocating for a couple of trials...all the time going without treatment for about 7 months now. Is yours a trial and if so do you have the number?
You are the bravest person amongst us. Thank you for undergoing this trial that has the possibility to cure all of us. Your courage is amazing. I will pray for you and pray the outcome finds you cancer free. God be with you on this journey.
How does treatment work? (Good luck, Beauxman!). Will immune sysyem...based on foreign marrow ...now produce white blood cells that are not fooled by cancer cells' defenses?
No, those were side effects of the cyclophosphamide chemotherapy, while I had no white cells. Now, I do have white cells, so we are starting to monitor for GVHD.
Hey Beauxman, you're a true inspiration. Your participation in this trial will hopefully help you big time, but will also potentially help the rest of us. I'm praying for you (pretty amazing as i am not religious). Cheers.
God bless you Sir and may He give you and yours strength and courage through this trial.
To Beauxman and all who are new here to read my story to know you are in control.
I think if you believe in what you are doing and is the most important health move for you, is what we all do, by talking to our doctors for guidance and doing research for better health, talking to others here and just reading their health issues to learn more about this disease we have and how its being fought on the front lines. I am doing Lupron, casodex, cannabis oil , CBD oil. radiation treatments for 2 months and now I'm only a week and half to go. my psa had started at 7 in the beginning when I was diagnosed. went to 9 after a 6 weeks of antibiotics , date for surgery almost 2 months away , I started to get panic attacks thinking about the surgery, I have quite of few friends that did the surgery and it seems to come back and they still have to do the radiation. I read that they are pretty much even as far which is best radiation or surgery, I never felt I needed the surgery because I had caught it way early. oh yea because a friend asked me if I had ever had a psa test, I didn't even know what he was talking about, he basically saved my life, I had only one core positive thats it. and no mets from ct and bone scans. where I am going with this, I really believed I didn't need the surgery but the doctor recommended it. so I asked him do I qualify for radiation, this was before the scans were done, he said after the scans we can talk about other options.I thought its probably possible I could have mets but highly unlikely because of only one core positive. I did start to have panic attacks about the surgery and decided on my own to cancel it, I did call the doctor who wanted to do surgery and wanted to ask him what my options were. the nurse I was in contact with at his office said he was at the time in surgery, so I asked did the doctor mention anything about the options and she said no. so I went and asked her did I qualify for radiation and she said I was great candidate because all I just mentioned, early stage. I told her to cancel my surgery and there was note with all info about the surgery, it said if I cancel the surgery I will have to pay $150 for canceling , she told me I didn't have to worry about it because I didn't get a chance to talk to the doc. I was relieved lol. its seems to me there is a lot time that is wasted dealing the health system. I know it is said prostate cancer is slow growing, well my feelings are when we are diagnosed and the word cancer is in each of our reality nothing matters and they are probably talking about men who have a low Gleason score and psa my feeling is get it when its the weakest,a friend of mine has Pcancer but low Gleason Score and PSA and they are watching it.I don't care what is said because we know how things can change and in a couple of years probably with new protocols, they might say oh yea lets eradicate it now and get it early , I am glad I took things on my own to change my life for the better because if you think about everything I talked about. if the doctor would have said, you have only one core positive and no cancer spread, here are your options, but it didn't happen. I was doing radiation through the pelvic area that lasted over a month now its being aimed at the prostate. I now feel I am at a good point but if everything moved faster they probably wouldn't be doing the pelvic which I am dealing with the side effects from and only the prostate. so the conclusion is if what I believed in would have been heard instead of being shuffled around by recommendations, I would probably be in a better situation.
I would say believe in what your doing but do the research and learn learn learn because it is our lives and knowledge gives us more control. I believe in working with the doctors with respect but I know they are busy with other patience, so its up to us to make sure we are doing something we believe in with confidence by knowledge.
I will be praying for you Beauxman for a healing ,Amen
God Bless us all here and Merry Christmas.
robert
I have heard of this trial. Aside from the fact that it is being run by Dr Denmeade at Johns Hopkins, what do you find engaging about this trial?
Especially to, say, a stem cell transplant from a matched donor?
I supposed a perfectly matched donor would be the same as not getting a transplant at all, since your current bone marrow is just fine.
As far as I know, this is the only trial offering a bone marrow transplant to patients with prostate cancer. Dr. Denmeade is minimally involved in the delivery of the transplant; I get largely the same treatment as patients with other types of cancer. After the transplant, Dr. Denmeade supervises the Bipolar Androgen Therapy.
I take it you skipped radium 223. Did you see Dr Pienta's trial at Johns Hopkins (too) with pleurixifor? He is trying to clean out bone mets during an aphhersis. I think think it is an intesting idea. There is a black box warnning on the drug, that seems to indicate that it could be helpful. But I don't know how that trial is going. Few trials work for everyone.
I am turning a corner. Now that I no longer have neutropenia, I can go out into public or visit people without worrying a lot about acquiring an infection. However, I am still anemic and am having late chemo effects, so I don't have much energy to do anything. Now that my immune system is relatively strong, the new concern is Graft Versus Host Disease (GVHD). We are hoping to see a little bit of it, meaning the cancer is likely to be attacked, but not a lot, indicating that my new immune system is attacking my whole body. I continue to get daily monitoring, so the doctors can react quickly with additional treatments, if needed.
I’m glad to hear your ok! I think this major treatment is so brave, and honestly I don’t even understand exactly everything that you have gone through. When you are up to it, I hope you can explain what all this has involved. I have never heard of anyone else that has chosen this new frontier. I think you have been through a lot, like so many others. My heart goes out to you, and all on this board. My husband is stage 4 Gleason 9 at diagnosis in October 2015. Mets to bones and liver and he is doing very well! You are all warriors in this battle! My husband gets up and puts his armor on every single day. And every day is a win! One foot in front of the other guys! Keep up the good fight!
Hope you are doing better,my brother has PC with Mets to all bones just diagnosed but just wanted to say that I and very familiar with bone marrow transplant( stem cell transplant) my daughter had one 4 years ago for leukemia ,unrelated donor. Some GVHD but easily controlled with meds, long journey but she is doing great now and the procedure was well worth it. Praying for you
Beauxman how are you doing? My cancer had metastasized first to my bone marrow so I am very intrigued by the trial you are involved with. I wouldn’t be a candidate for this one as I’ve already had chemo but am definitely interested and will be closely following. Prayers to you and your family.
I've had my share of complications, so it has been a very rough couple months, but I am still alive. My PSA velocity has gone down slightly. Today, I had my first testosterone shot, and it has already increased the pain in my hips and back, but the pain is still well managed.
So far, so good. After 18 months of doubling every two months, my PSA went down 40% during my first month on testosterone. Now the question is whether that will continue.
Even better, the testosterone has lots of other good effects.
I think Dr. Denmeade expects the PSA decline from BAT will not last, but he thinks other future treatments will be more effective, with my new immune system. However, he still isn't sure exactly what the next treatment should be.
My next appointment with Dr Denmeade is June 21st. We will have fresh scan results and a new PSA reading from June 20th. At that point, the trial will be over and we will discuss what to do next.
I always like to have more than one option, so I made an appointment with a researcher at the University of Pennsylvania hospital for June 28th.
I took a trip to visit a friend near Philadelphia a couple days ago. I took the train, so I could sleep in transit, but wasn't able to fall asleep on the unfamiliar train. I did a lot of walking that day and had no nap. It was exhausting, and now I am paying for it. The following couple days, with increased fatigue and pain, I haven't been able to do much. I've mostly just been sleeping and eating for the last 48 hours, only leaving the house to buy food. Hopefully, tomorrow, I can accomplish some pending tasks.
After a couple months without testosterone shots, my PSA doubled, so apparently my new immune system isn't any better than my old immune system at detecting and fighting my prostate cancer.
The Bipolar Androgen Therapy was working well, so I will do more of that. Dr. Denmeade says it usually works for 6-9 months.
An additional month of BAT didn't help. My PSA rose its usual 40% in a month, up to 750. I'm probably starting chemo soon, in a clinical trial with or without intravenous ascorbic acid.
I feel no worse than I did before the transplant; I have no lingering GVHD symptoms. I just have pain from bone metastases in my hips and spine, plus a lot of fatigue. I can stay out of bed for half a day, if needed, but I have to rest at home for a full day before and after. My pain varies from day to day. Sometimes, I feel good. Sometimes, pain from a hip radiates down one leg. Occasionally, I have pain in both hips and can barely walk, so I have just requested my first handicapped parking placard.
Very sorry that hear that the transplant get the results you were hoping for. Have a handicapped placard and haven’t ever regretted it. It helps me not spend my energy in the parking lot! I recall we are both young with young children. Keep updating. I’m rooting for us both.
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