Greetings Brothers. Just met with my MO at Duke Cancer Institute and the clinical trials experts. Given my prostate has evolved to Gleason 10 and neuroendocrine (small cell) I'm in the process of qualifying for the CHAMP trial: Nivolumab, ipilimumab, cabazitaxel and carboplatin. I'm aware the predicament this beast of a disease has put me in and thus I'm game for anything to give me more time with friends and family.
Only real questions are:
1) Anybody in the CHAMP trial?
2) If yes, experience, prep tips, etc.?
3) Side Effects? (pre-read materials has like 10 pages of them!)
Thanks Brothers,
Herbie
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HerbieP
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Can't help with your questions, but just want to say... nice pic!
Keep rockin Kid! That salt air behind you looks healing to me . I’ve been on a test drug for over six years . There is much hope in the test . Sorry that you’re foot is caught in this trap . It seems that you’ve already figured out the big stuff ( time loving family and life itself . Best of luck to you on this trial .👍
Wonderful picture. Healthy looking couple! No experience with the battle you are about to encounter, but you look strong and prepared. Our best to you both Herbie P!! Please keep us posted if you have the strength. Our best to you and yours,
I don't have direct experience with the drugs as a patient, but if I my PCA evolves to neuroendocrine I would be looking to the drugs in the CHAMP trial. I wish you well please keep us posted.
So hard to read a lot of these posts. I see warriors and warrior families, but just reading about what my brothers and their families are going thru, is brutal. I think the ADT has me a bit of an emotional wreck but there’s no denying this is a wild and crazy ride for all. For you Herbie and your wife I pray for blessing, strength , and peace.Oh, and great pic! I see happy people there!
Looking great both of you. I don’t have the answers but I can imagine the side effects you may have to endure. But rest easy, the good doctors will be on hand to help ease any pain. Take care ❤️
Herbie, My husband, Steve (Stevana on this site), has had first hand experience with one of the drugs you mention, Nivolumab. He started a phase 2 clinical trial of Docetaxel and Nivolumab in August 2020. He started with infusions of chemo and Nivolumab on the same day, every 21 days. He finished with chemo in December but then was supposed to stay on Nivolumab only for 24 months, with infusions every 28 days. Unfortunately he had to leave the trial in May of this year because of an adverse side effect. He developed stomatitis almost from the start which at first they thought was thrush but later found to be stomatitis which is somewhat similar. Apparently it’s a rare side effect and his MO was afraid it would become permanent if he didn’t stop the trial. He is still taking medicine for it but it’s never gone away. Now he has developed colitis which his MO thinks is from the Nivolumab. Apparently you can develop this months after being on the drug. That side effect is not as rare and about 21% of people develop it. My wonderful hubby goes to see his gastroenterologist this week and hopefully will get some medicine to get rid of it. As you know, when you are part of a clinical trial they give you paperwork of all the possible side effects. Steve has had 2 (so far) but everyone is different so you don’t know until you’re on it how it will affect you. It looks like you will be on one heck of a combination. I hope you fare well with no complications and it helps you. Feel free to message Steve if you want more info.
By the way, I love your web site. Stay positive and keep smiling. 😀
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