I have tried everything but chemo, and they haven't worked, so I am getting a new immune system. My next clinical trial is 'Sex-Mismatched Allogeneic Bone Marrow Transplantation for Men With Metastatic Castration-Resistant Prostate Cancer'
I hear the the chance of dying from the transplant is 10% during the first six months, but gets lower as time goes on. In the long run, that is better than the cancer, which has a chance of death that gets higher as time goes on. The chance of this controlling the cancer is totally unknown; we don't even have anecdotes. In a year, I will be the anecdote. It is scary, but seems like my best option, with a 65 PSA, growing mets and a two month doubling time since failing Xtandi seven months ago.
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Beauxman
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Hey Beauxman. We are the pioneers. Same here. Nothing has slowed it for me except for chemo and Zytiga (for a very short time). I've done chemo twice so...worried that this mutation (finished chemo 2/7 and PDA began doubling a month later). Hoping this trial for you is the magic bullet.
You said you have "tried everything but chemo, and they haven't worked".
I noted in the Clinical Trial's Exclusion Criteria that these agents are listed:
•Prior treatment with Sipuleucel-T, radium-223, strontium-89, or samarium-153
•Prior chemotherapy (docetaxel, cabazitaxel) for castrate resistant prostate cancer
Before you literally wipe out your bone marrow T-cells immune system and try to replace it with another, you might consider getting a second opinion somewhere about the possible use of Provenge (Sipuleucel-T), Xofigo (radium-223), Taxotere (docetaxel) or Jevtana (cabazitaxel), in some sequence or other.
Also, have you had any genetic testing done of yourself or your tumor/mets tissues? I've heard of men who, e.g., have been found to have a something like an inherited BRCA-2 gene, and are trying a PARP inhibitor. And there are other clinical trials out there that are looking at immunotherapy agents that may target disease cells that express particular genetic markers and attempting to "release the hounds" of the immune system in various ways to attack more cancer cells.
Finally, besides this particular trial located in Baltimore, MD, might it be worth your while to do another cross-check of other advanced prostate cancer trials at other centers of excellence relatively nearby, such as in New York City, etc.
Just some thoughts.... Don't intend to try to second guess you, but that 10% chance of dying during the first six months a trial sounds pretty scary to me.
Beauxman, I couldn't agree more with Charles. I would want to see how beneficial these options you HAVEN'T TRIED might be for you before considering something that potentially fatal, as well as untested.
I had a germline test (Color) which looked for 30 mutations and found nothing. I am getting my old prostatectomy tumor sequenced now, to help decide on an alternative treatment, just in case we can't find a matching bone marrow donor
I can always use Xofigo and chemo later, but if I use them now, I can't get the bone marrow transplant. Those treatments statistically/historically just add a few months to your overall survival. That's not good enough for me. I am only 45 and want to see my three year old twin sons graduate high school, at least.
This is fascinating. I wouldn't qualify for this one, but potential trials are always part of the conversation with my oncologist. Very best wishes to you.
Here is an article about this new way of doing a bone marrow transplant without a perfect match. We are hoping my 27 year old neice will be a match. My mother is guaranteed to be a match, but she is 74. star2.com/health/wellness/2...
sounds interesting, lets hope and pray for a good outcome, we should all be as brave as you and use clinical trials when that is the only thing available to us, we have to find a cure for this thing.
peace
jack
You're a courageous soul, my friend, and I will be pulling for you to be successful with this treatment. Talk about a cancer moon shot! You'll be the Neil Armstrong of prostate cancer! I trust you have discussed all issues post-transplant with your docs. I know that other organ transplant recipients have to remain on immunosuppressive drugs for the rest of their lives, but I'm not sure if that is true with bone marrow transplants, but that's a discussion you should have, just so you are aware. Much good luck!
Wow Beauxman, you are a brave man, if I had to face your option, I'm not sure what I'd do. I too am reasonably young, with small kids, so I definitely feel for you. Whatever you do, I wish you all the best. You are a pioneer, I wish you only the best outcomes - we're all pulling for you.
Everyone in my family was found to be too old, too sick, or not a sufficient match. However, Dr. Denmeade decided to modify the trial to allow unrelated donors. I got an email on June 5th saying I have mismatched unrelated donors on the registry that are female. Blood samples will be requested of those individuals, the blood will be tested against my blood for degree of match then one chosen. This usually takes a couple of months. So, I am still waiting.
A great thing about this clinical trial is that the transplant is followed by Bipolar Androgen Therapy! From the description: "Lastly, to produce maintenance tumor antigen stimulation, patients will be maintained on continuous LHRH agonist/antagonist therapy (if not previously surgically castrated) to suppress endogenous testosterone production throughout the treatment period; testosterone cypionate 400 mg IM will be administered on Day +60, +90, and +120 (every 30 days x 3 doses). Patients who achieve biochemical CR will stop LHRH agonist/antagonist treatment at day 180."
We're finally getting started! I will be the second subject in the trial, and the first with an unrelated donor. Chemo starts on Dec 21st and transplant Day Zero will be Dec 28th.
Good luck to you. I was actually down at Hopkins today enrolling in the BAT study but I’m giving serious consideration to the bone marrow transplant. Thank you for your bravery and please keep us informed. God be with you!
The transplant went well enough; I survived. One month after my first testosterone injection, my PSA was down from 480 to 336. We'll see soon whether that good trend continues.
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