Well our roller coaster continues. In early December we began making plans to go to Germany, even had dates offered to us in Munich, then my husband finally got a tissue sample after six tried ( see bio) and we contacted cancer institute to find places for a psma test prior to our trip what they sent us turned out to be trials for Lu177 and Ac225. We contacted Weill Cornell and were encouraged to establish care and within a week were on the wait list for trial hopefully we were told to happen in February. In the meantime my husband went into his second line of chemo, cabazitaxel, to get us to February . Well as many of you who are on this waitlist knows they have stopped enrolling due to a change in protocols. Unfortunately the chemo is not doing it's kind and my husband's psa has shot up to 300. Doc said last week that if there is no improvement this month then no more chemo. So back to square one where we were in early Dec but with triple psa! Scans set for next week and we just met with a doc at Karmonos in Detroit who has several immunotherapy trials and is seeing where my husband may benefit most.
Question, right now I have no details on which ones she is looking at but I'm wondering who has had immunotherapy and what can we expect for benifts? I'm the meantime we will also be reconnecting with Germany. Timing is just tricky as our son is a senior in high school and these are his last few months of his schooling. My hope is my husband will be well enough for these next few months to attend all that this time holds for my son, and I just don't know how immunotherapy affects your day to day living.
Thanks for your thoughts.
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Dalipup
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Hi Dalipup, sorry to hear you're on a steep drop of the roller coaster that is cancer. I just started chemo yesterday which includes atezolizumab, an immunotherapy agent that is an antibody against PD-L1. I'm still coming up to speed on immunotherapy but here's what I've learned along with some speculative thoughts:
Overall, immunotherapy provides impressive results for a minority of patients. It generally works by removing barriers preventing the immune system from attacking the cancer. If the barrier removed by the drug is the primary reason the immune system can't attack the cancer, you'll get a fantastic response. If other barriers are in play then it will be a disappointing result.
I also recently read that immunotherapy works better the more mutated the cancer is (speculation: it's easier for the immune system to recognize it as defective and attack). Thus, there have been spectacular responses in patients entering hospice who have failed every other treatment, and trials in patients with less mutations and less prior treatment provide more modest results.
More speculation on my part: The success or failure of immunotherapy comes down to whether the immune system can take out cancer cells faster than they are growing. A strong immune system with a slow growing cancer (perhaps because it's limited by other therapy) has a better chance of success than a weak immune system against a fast growing cancer.
Side effects from immunotherapy should be relatively minimal. However, there is a chance it will cause the immune system to attack healthy cells, in which case side effects will appear as an auto-immune disorder.
I hope your husband is in the minority that get a terrific response. My medical team is very enthusiastic about the upside potential of immunotherapy, and my MO had a lung cancer patient who achieved a completely clear scan on it, then died a few years later of a heart condition in her 80s.
Thank you! This is a great help. My brain is having a tough time keeping up with the constant decisions we need to make which are truly life threatening decisions! One minute I am convinced we need to head to Germany and the next minute I'm convinced we need to try these therapies first.
Our prayers are with you as you enter this next phase of your journey as well.
I’m meeting with immunotherapy researcher at MD Anderson tomorrow. There may be a number of clinical trials I might qualify for. I’m interested because my cancer has morphed to small cell carcinoma so perhaps this is a good direction to go. We will see.
Unfortunately, immunotherapy with checkpoint inhibitors hasn't been very effective for prostate cancer. The notable exception has been in men with a rare mutation called MSI-hi/dMMR. If he had a genomic analysis, they probably screened for it.
If he had a PSMA PET scan and his cancer is PSMA-avid and homogeneous, the PSMA therapy in Munich is certainly worth a try. There is an experimental kind of immunotherapy called bispecific T-cell enlistment (BiTE) that is in several trials in the US. There are also trials of CAR-T, which may be more promising. The relevant trials are listed at the end of this article:
Thanks so much Tall Allen. We have had contact with Matthias Eiber in Munich but he says they don't do the combo lu177 and ac225. We plan to reach out to Dr ezzidin in Homburg do you have a recommendation for heidleberg? Or anywhere else in Germany?
I don't know where is home for you. But this might be something to consider: The DARRT-2/3 trial that is opening in Australia. It uses a radio-sensitizer / immunotherapy enhancer combined with low-dose radiation of a single metastasis site to trigger a powerful "abscopal" immune response throughout the body. The medication is Veyonda (formerly NOX66) by Noxopharm. The results of their DARRT-1 trial were astonishing for very advanced PC.
I'm a recipient of Pembrolizimab Keytruda when Genomic Sequencing determined I might be a match for checkpoint inhibitors Blockade immunotheraphy, although negative for PDL1 and Not MSI..I do have a Hypermutated HBM with a rare POLE mutation,.I was given 3-6 months to live 5 yrs ago, no response to any conventional treatment..after 47 infusions I'm in a durable complete Remission NED currently, 4 yrs and another 3 infusions to go over next 9 months..living a very active and pretty normal lifestyle without limitations, I know I'm an exception and one of the lucky responders, my only side effect is Adrenal Insufficiency controlled with low dose Prednisone...Fyi, I had casodex, Lupron, Chemotherapeutic drugs, surgery Prostadectomy, bladder met ,another surgery , infections, hospitalization on several instances, catheters, you name it!, I went into the very dark tunnel of life and came out the other side...I very lucky to be one of the few that are being helped with targeted precision treatment..God Bless.
Thank you for this hopeful message! And I'm so happy for you. Where are you located and where do you go? My concern with what may be offered to us is that it is generic trials and not the targeted therapy you are talking about. I don't feel we are in a position now to play "well let's try this one" game but need something more focused on his specific cancer. When they did his tumor analysis it showed a few mutations but nothing that you normally run across so I'm not sure how they would target it or if they have that ability yet. I feel I'm becoming a scientist and lawyer reading through all these trial papers!
My husband had Keytruda immunotherapy and his PSA is now undetectable. He is currently on treatment holiday while the side effect of multi-organ insufficiency is being addressed by endocrinologist. He is feeling better. For him cancer treatment has been a balancing act.
So the keytruda through him into this insufficieny? Where there specific gene mutations that they felt keytruda was good for? Great to have psa drop. Fines he have none or organ mets?
Yes, he was started on Keytruda infusions every 3 weeks in July. The adrenal crisis occurred a day before his January dose would have been administered. The side effect was quickly suspected and the infusion of Keytruda cancelled in favor of Ringers solution to bring his blood pressure up enough to be able to draw blood for the tests needed to confirm the diagnosis. His mets were in lymph glands only in lower chest and around the kidneys in places to dangerous to surgically remove or biopsy. Since most clinical trials want a biopsy, that kept him out of them. The medical oncologist had circulating tumor cells (in the blood) tested for genetic variants several times. His variants did not match other treatments. Having run out of options, the MO was willing to give Keytruda a try since he had seen complete remission in his patients with other cancers on Keytruda.
I get the no biopsy for trials as my husband went through six before they finally got tissue that was positive from his bone. My husband's cancer is all through his bones. I'm so sorry for all you're going through seems like each time we get a positive glimmer of hope, a month later something kicks you back in the gut. Hang in there and try to take care of yourself as well.
I find playing the bass drum extremely therapeutic 2+ times a week. While I was still working, the snare drummer could tell when I'd had a bad day with the graduate students. He had to give me more swinging room. Singing in church choir soothes my soul.
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