I thought I would update you all and let you know that Mike just completed 5 rounds of palliative radiation (6/5) to shrink lymph nodes in the neck and shoulder area with the hopes of decreasing the pain and swelling of his left arm (he’s a lefty). It has helped the pain but the swelling is still there. Hoping, in time, that will improve. As I type this, he’s in pretty bad shape (please see my profile for his history). He has been through so much. I spoke with his primary oncologist and hospice came up in conversation. Like many have posted in this group, I want him to have quality of life. We are young with 2 little guys (now 11 and 9). Mike wants to fight and wants to continue to try more treatment options. He will be screened on Tuesday for the DART trial, which is similar to CheckMate 650. His cancer has progressed on multiple chemos and on the immunotherapy Tecentriq. I am not hopeful that this trial will benefit him. He does carry the BRCA2 gene. We have Lynparza as our last treatment option. He wants in the trial. I know the toxicity effects others have experienced with this combo in the past and the results were not promising for those with mCRPC. Mike has t-SCNC. Wondering if anyone has heard anything about this trial and your thoughts for cases similar to Mike’s?
There is a DARRT - 1 trial (just finished) with a DARRT 2/3 starting unsing low dose radiation and Veyonda -- that is very promising. It has an abscopal effect.
Veyonda (idronoxil) given in combination with low-dose radiation therapy was able to shrink metastatic lesions well outside the radiation field in about 27% of men with late-stage metastatic castration-resistant prostate cancer (mCRPC) in the DARRT-1 Phase 1 trial, updated data show. “To our knowledge, this is the first time that anyone has been able to obtain a meaningful abscopal response rate in prostate cancer,” Graham Kelly, PhD, executive chairman and CEO of Noxopharm, which is developing the therapy, said in a press release. Veyonda is an immuno-oncology therapy candidate, meaning that it is designed to act on both cancer cells and the immune system. Considered a radiation sensitizer, it blocks ENOX2, an enzyme involved in cancer cell survival, making cancer cells more vulnerable to the effects of chemotherapy and radiotherapy.
This is interesting! Thank you for the reply. The trial I’m referring to is different. In my original post I attached the link. It a combo immunotherapy, similar to the CheckMate 650 trial. Designed to examine on rare tumors. Mike has small cell neuroendocrine prostate cancer.
Hi Nikki, so sorry to hear about Mike! I don't have any comments on specific treatments, but have given some thought to the trade off between quality of life and survival.
I just had my last carboplatin+etoposide+atezolizumab infusion two weeks ago, and had my ureter stent changed last week. I am exhausted, have some trouble sleeping, and something always hurts or feels a bit unsettled. A CT scan later this week will tell how well the treatment worked. After two weeks there were impressive improvements, and now it's time to see if the that success has continued. The MO may consult a tumor board about the possibility of radiation to the prostate (and bladder?) afterwards. Radiation? Just shoot me!
Without the radiation, I expect to recover from the chemotherapy and be able to resume many activities within a few months (assuming the cancer stays away). With radiation? More fatigue, possible incontinence, possible urinary retention, etc. I was even speaking with a guy during an infusion who is dealing with a burned rectum from radiation. And for what? Seriously, I'll need to talk to my MO about what benefits he's expecting. His recommendation is based on experience with small cell lung cancer, which is similar to NEPCa. Ironically, I know somebody who developed small cell lung cancer right around the time of my NEPCa diagnosis and we've gotten extraordinarily similar treatments. He's getting radiation now after the exact same chemo cocktail I had.
Okay, maybe this is more of a personal rant than helpful advice, but one thought I did have is that clinical trials are a bit different. I'd be more willing to endure pain and suffering if it was helping to advance the state of medical knowledge. That will be another question for my MO: If he recommends radiation, will my experience somehow help those who are diagnosed after me? I do want quality of life, but I'm willing to sacrifice some of that in the interest of science.
Tom, so nice to hear from you. I read your most recent blog post. I know those feelings of scanxiety and hate how this cancer has us benched when we really want to get back in the game of enjoying life. Please keep us posted on your scan results. Mike and I are on different pages at this stage of his treatment. I want quality of life while he is in the mindset of quantity. I support him 💯 but it’s difficult seeing him in poor health while wondering about the effects of the next treatment on his ability to enjoy time with us. Damn cancer! He was screened yesterday for the trial. Scan results aren’t in yet, but his liver and kidney function are borderline. They will run labs again on Friday to see if things have improved. If so, he may start treatment next Tuesday. Wishing you all the best!
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