Study participation

[Misanthrope12]

I've been asked to participate in a study for a drug called Nivolumab. It's done in conjunction with chemotherapy. I was given a 35 page document explaining the test and the side effects of which there are many. My question is have any of you heard of this drug or ever been involved in a study for it? Reading all the possible side effects scares me. Thanks

[LearnAll]

It is newer version of MUMAB family of drugs. It has not been proven to be effective for prostate cancer but has shown some efficacy in melanoma and other cancers.Side effects are bad..it does mess with thyroid and has other many toxic side effects.

[Misanthrope12 in reply to LearnAll]

Thanks. I'm glad I decided against it.

[Tall_Allen]

Nivolumab (Opdivo) is an immune checkpoint inhibitor, which means it keeps your immune system fighting the cancer for a much longer time. It is usually well-tolerated. A very few people get severe autoimmune reactions, which has to be controlled with cortisone.

By itself, it does little to fight prostate cancer (although it is VERY effective against some other cancers). By combining it with chemo, the hope is there will be a synergy. Here's why:

(1) Opdivo may help chemo more completely kill the prostate cancer that is incompletely killed by chemo alone.

(2) Opdivo stimulates the immune system that is depleted by chemo

(3) Chemo kills many cancer cells, and their proteins (antigens) stimulate the reactive immune system to create antibodies. Opdivo maintains the improved antibody effectiveness.

[Spyder54 in reply to Tall_Allen]

TA, I have screen shotted so many of your responses. This is another. So clear and precise.

Thank you,

Mike

[Misanthrope12 in reply to Tall_Allen]

Thank you.

[tango65]

The way I understand it, is that Opdivo is an inhibitor of the PD1 check point inhibitor protein which is present in the normal killer T cells.

Since PD1 is inhibited, the killer T cells ignore the presence of the PDL-1 (other check point inhibitor) which is over expressed in many cancers cells and allows the cancer cells to avoid the immune system. Having the PD1 receptor inhibited by Opdivo the T cells can destroy the cancer cells expressing PDL-1.

The problem is that the drug may allow T cells to attack normal tissue causing all the negative side effects.

en.wikipedia.org/wiki/Check...

cancer.gov/publications/dic...

cancer.gov/about-cancer/tre...

accessdata.fda.gov/drugsatf...

I would participate in the trial if the cancer is studied and shows to be PDL-1 positive.

[Misanthrope12 in reply to tango65]

Thanks for the information.

[tango65 in reply to Misanthrope12]

I wish you the best of luck!!

[Misanthrope12 in reply to tango65]

Thanks so much. It's reassuring to have your support.

[addicted2cycling]

This combo better than individual ???

cancernetwork.com/view/nivo...

[Spyder54 in reply to addicted2cycling]

Addicted to Cycling,I noted on your study that Men w DNA Repair genes, like BRCA1/2 did extremely well on the double cohort.

Thanks,

Mike

[Hidden]

My husband was also offered to participate in this trial, and we decided to go to a cancer research facility for a second opinion on it. According to the 2nd opinion oncologist, he said that if my husband didn't have specific genetic mutations, then the immunotherapy drug would be useless. He ordered a DNA test for these specific circulating tumor mutations , and found that he didn't have it. Since he's already gone through chemo with docetaxel, the 2nd opinion doctor said it's time to look at a treatment protocol other than chemo; we get a PET-PSMA done in a few weeks, and will proceed from there.

[Misanthrope12 in reply to Hidden]

Best of luck.

[j-o-h-n]

Do they give you free ice cream during the study? Now Now don't hate me for that remark (just hate me).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/10/2021 8:28 PM DST

[j-o-h-n]

Please tell us your bio.

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All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/10/2021 9:52 PM DST

[Misanthrope12 in reply to j-o-h-n]

I'm 80 years old and live in the Pittsburgh area. I was diagnosed in March of 2020. I started with two shots in the belly of Firmagon. Next I was given Finasteride and after that Zytiga and Ptednisone. Twenty radiation treatments followed. The Zytiga lowered my PSA from 20 to .8 but the side effects were difficult - liver enzymes raised and extreme fatigue and back pain - so I was taken off it. Oh, my Gleason score was 8. After Zytiga I was switched to Xtandi. Took that for a short time, then went off it for a while again because of adverse effects but later was put back on it - gradually. I stopped the Xtandi on October 8th. and am now about to start chemotherapy - 10 sessions with one every three weeks. While on Xtandi my PSA went up to twenty. Tomorrow I'm going to set up an online session with a doctor from Sloan Kettering just to get another opinion. I'm being treated at U.P.M.C. in Pittsburgh by Dr. Appleman. Before I was diagnosed, at age79. I was doing 100 push ups at a time and a hundred step ups/step downs on a kitchen chair. Now I can barely do 40 and no more step ups because I took a bad fall after starting on the medications due to m loss of balance.

[j-o-h-n]

Thank you for your quick and detailed response. I too took a bad fall recently and the same story as yours (balance problem). 100 pushups for a man who's 79, and still 40 at the age of 80 is the eighth wonder of the world. Between the ages of 43 to 53 I use to do 200 pushups a day and 1,400 sit ups.... I happen to be a patient of Sloan Kettering, which I consider the number 1 cancer hospital in the US. Very smart idea to get another opinion and from a great hospital with an excellent staff. Doing 100 step ups and step downs on a kitchen chair in the past is extremely difficult.... I can hardly get up from a prone position which I'm doing a lot of while restoring my kitchen floor. I know that there's a lot of advice on here about hitting the cancer fast and furious in the beginning, but 10 session of chemo at your age seems a bit too aggressive but hopefully the MSKcc doctor will give you the proper advice. BTW you've come to the right information, advice and camaraderie. So stay with us and keep posting.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/10/2021 11:04 PM EST

[Misanthrope12 in reply to j-o-h-n]

Thanks, j-o-h-n. What I forgot to mention was that what started this journey was the fact that one night I couldn't pee - not a drop. My left side began to really hurt as my bladder filled up. At 2 in the morning I went to the nearest emergency room - by now the pain was excruciating. A nurse put me in an examining room, closed the curtain and disappeared. Waiting, waiting, waiting , pain mounting. Finally. I pulled the curtain aside and said, quietly, tentatively, "hello, hello." Nurse shows up: "What's the problem". "I'm in terrific pain." She said: "Well, we're waiting for the doctor." She leaves. Pain through the roof. Finally, doctor shows up. "Put a catheter on him", she says. They do, clumsily. Relief at last. I go home. The catheter leaks, doesn't work. Back to the hospital the next day. This time a young man who seems to know how to put a catheter in a penis, inserts it smoothly, easily. I'm told to see a urologist. I do, I have the "green light" surgery, go home. He tells me to come back in two days. I do. He removes the catheter at 2 in the afternoon, squirts some water up my penis which hurts like hell. Water comes out. He says now I can pee. I go home happily. Turns out I can't pee. That night the pain in my side returns, I go to a different emergency room (much nicer people) and have a new catheter fitted which I then wear for 66 days. I cancel my next appointment with that doctor - who I can barely understand - and find a new doctor. The story goes on but I'll stop here.

[j-o-h-n in reply to Misanthrope12]

Hello Misanthrope12,

So many members here have started off with the same issue which happened to you: not being able to urinate. Then it was like a domino effect with trying to cure it. Many of them experienced the "Foley routine". What the hell is going on with the US population, no one gives a damn for the other guy. Dog eat Dog. After me your first. Well at least you have come to the right place for information and help. Everyone here is helpful and are very considerate. I fight my Pca with humor.... So smile and enjoy life........

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 11/12/2021 10:55 PM EST

[Misanthrope12 in reply to j-o-h-n]

Thanks, John. I'm sorry but I don't know what the Foley routine is. Yesterday I was able to do 50 push ups. Felt like Superman. On a show I saw with a couple of guys who are physical therapists, they said they heard that if you can do 40 push ups you have a 0% chance of having a heart attack. Sounds good doesn't it. By the way, you having been able to do 1,600 sit ups and 200 push ups is really impressive. I could never do sit ups because they made me nauseous.

[j-o-h-n in reply to Misanthrope12]

You're welcome. Foley routine = catheters (in and out).... You will make it to 100 + 1 day....50 pushups is astounding.... keep them up. You gave me 200 extra sit ups....I used to do 1,400 (4 sets of 350) but that was between the ages of 43 and 53. The pushups were the ones with 2 feet on the couch or bed while pushing up with my arms. Yep I used to feel like Superman now with losing my memory I feel more like Stupidman. Stay well and keep posting here.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/13/2021 12:56 PM EST

[Misanthrope12 in reply to j-o-h-n]

That's a challenging push up position. Good on ya. Thanks for the Foley information.

[j-o-h-n]

OOPs I forgot to mention, Good Idea to copy and paste your information above on your home page. It will save you and others a lot of trouble when trying to help you.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 11/10/2021 11:08 PM EST