Keytruda (urethral cancer): What's your experience?
Friend was diagnosed with mucinous adenocarcinoma primary to the urethra and is being treated through Stanford and UCSF. He was told that this is a very aggressive cancer. Info coming in from UCSF (after 20 biopsies) after a month gave some hope as this rare cancer mutates every 26 rounds (usual cancers 2 or 3), and that immunotherapy would give a good chance of interrupting the mutations since they are so elongated. Friend received one dose of Keytruda a month ago and had a severe hives reaction on his trunk and whole scalp peeled. Yesterday, CT Scan with contrast revealed no remaining cancer....a PET scan will be performed in 10 days at Stanford....this was only one dose of immunotherapy. Radiation was to start next week but has been put on HOLD>
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WOW is all I can say. Well, wow, best wishes to your friend, and thanks to you for posting. I hope you will be able to post an update after his PET scan.
it does seem amazing and we are hopefully awaiting a PET Scan result in 10 days. UCSF specialist had recommended many more doses of Keytruda than were administered. He also advised that the crazier the immune response the greater the cancer kill. Medical science has never had anything much to counter this unusual cancer before immunotherapy, which does not yet have research to back this up at this point (for this type of tumor). All physicians have just given the impression that it is a very aggressive cancer.
Noelles: My best thoughts are with you both… thank you for sharing which has given so many of us HOPE! I am grateful!
Hi Noelles,
What a bad situation for your poor friend! Having his whole scalp peeled must be terrible for him plus the severe hives! However, it is very good that there was no cancer afterwards.
My husband has lung cancer. They talked us into getting Keytruda and my husband almost died from it. One of the severe side effects of Keytruda is pancreatitis. My husband got down to 120 lbs when he used to weigh 150. He was very sick for a long time. It was his primary care doctor who referred him to the correct specialist that gave him medication that finally got him well. My husband refuses to have another Keytruda infusion and I don't blame him. This made the cancer doctor mad since the insurance company had approved another 6 months of Keytruda infusions. (These infusions cost $25,000 each! My husband was receiving 2 infusions per month.) That was 5 years ago. Since then, we have merely relied on God with a lot of prayers. Today, my husband is doing fine. He's 82 and drives the car very well, fixes breakfast, lunch and dinner, leaf blows our yard and our 88 yr. old neighbor's yard, takes our heavy garbage bags and the neighbor's down to the dumpster, fixed the kitchen drain, put sliders on chairs so they moved easier on carpeting, folds laundry and unloads the dishwasher! He also no longer needs hardly any of his breathing medications either.
Noelles, I would suggest that your friend just leave things as they are since there currently is no new cancer and just pray about the situation. Also look up on the Mayo Clinic website the side effects of Keytruda and then make a decision about further treatment.
I will say a prayer for your friend.
PML
I believe I have the same rare cancer. Mucin producing urothelial adenocarcinoma with urethra primary and prostate involvement. Various Mets. On Keytruda, ivermectin and 5-FU. CEA has dropped from 30.7 to 3.8 and symptoms are improving. Tumor is PDL-1 positive at 100. Would like to compare notes and share info as this is a very rare tumor.
Well I got TD1 from Keytruda so be very careful.
I believe Keytruda is very dangerous and perhaps other alternatives should be tried first !000mg 95% curcuminoids with black peper extract seems to work.
One such holistic alternative is curcumin. It is water soluble and hard to get to blood stream with oral supplements, so must be taken in high dose concentrated form made bioavailable. 1000 mg 95% curcuminoids with black pepper extract extract taken every 4-5 hours works well. Although many medical studies support this, the medical community does not appear to be well informed of it yet,
https://onlinelibrary.wiley.com/doi/10.1002/cbf.3824?af=R#:~:text=Curcumin%20treatment%20inhibited%20proliferation%20and,also%20reduced%20the%20MMP2%20activity.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8980239/
https://www.frontiersin.org/articles/10.3389/fphar.2021.668567/full
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8307022/
https://www.mdpi.com/1422-0067/23/22/14058
https://onlinelibrary.wiley.com/doi/full/10.1111/bcpt.13648
https://celldiv.biomedcentral.com/articles/10.1186/1747-1028-3-14
https://www.dovepress.com/role-of-curcumin-in-regulating-p53-in-breast-cancer-an-overview-of-the-peer-reviewed-fulltext-article-BCTT
https://www.sciencedirect.com/science/article/pii/S0223523419306361
https://www.reviewscout.org/top-5-turmeric/
Word from Stanford that overall rash diagnosis is psoriasis and may never fully resolve
so far no mets. waiting for PET Scan coming up
donsonlover
where can you get bioavailable curcumin? i checked a while back about getting infusions from a naturalist, but she said it was now illegal. i am still interested in going this route.