Has anyone used CheckPoint Immunotherapy?

[Olivia007]

Hello again, the Zytiga seems to be slowing down and not helping my dad his numbers are rising so its either Chemotherapy or an Immunotherapy called Checkpoint has anyone heard of it? If so any thoughts on it. Dad is against chemotherapy and so if he is a candidate for it we will try immunotherapy.

[Tall_Allen]

Checkpoint inhibitors (either PD-L1 or CTLA inhibitors) have not tested well for PCa to date. The only exception is if he has a rare genetic abnormality in his tumors called MSI-Hi/dMMR. If he has that (learned from a tumor biopsy), then Keytruda may work for him.

It is tragic that so many people, like your Dad, put off docetaxel until it no longer does much good and carries more side effects. It is doubly tragic because it is a great source of bone pain relief. Unfortunately, people get emotional impressions about it from experiences of acquaintances using different kinds of chemo and from movies. It's hard to be rational about something that has so much emotional valence.

[Olivia007 in reply to Tall_Allen]

Thanks for the info. The chemotherapy was offered now it was never offered in the beginning 2015 when my dad as first diagnosed it was lupron, xgeva, Provange and now zytiga and prednisone . The doctor told us chemo is not so bad but what’s not so bad?

My dad is 81 lives in his own home my mom passed away 2018 they were married for 56 years. I don’t know and he doesn't know if he can handle chemotherapy. If he was 61 maybe but 81 i don’t know yes tv makes it seem scary we have not talked with anyone who has prostrate cancer and did chemotherapy to know what to kind of expect. As far as side effects go. How many more years will the chemotherapy give him if we go that route? I don’t know. He wants the least side effects. If he isn’t a candidate for it I don’t know what we will do.

[Tall_Allen in reply to Olivia007]

Chemo should be considered when there are multiple mets or any visceral mets while hormone sensitive, or for those with any mets if castration-resistant. You seem to be "catastrophizing" the side effects - based on what? Why do you imagine he won't be able to fend for himself? I can't tell you if it will be easy or hard on him - that is very individual. I can tell you that he will be assessed for suitability and watched closely, and cycles may be stopped or delayed (there are usually 6) if he reacts badly. His doctor will go over all the possible side effects. I have met men who had an easy time of it, never interrupting their activities - but that is just someone else's experience. This is true of any drug anyone takes.

I can't tell you how many more years it will give him - how many would justify the 18 weeks for him? I can tell you that it added about a year and a half to lives if used early and a few months if used towards the end. I can also tell you that it improves QOL and relieves pain.

[Olivia007 in reply to Tall_Allen]

Thank you, and I’m sorry I sounded like that just a decision He can’t make so I have to make it for him and I don’t have any family to talk it over with my 2 other siblings are not speaking to my dad so it’s all on me.

[Schwah in reply to Olivia007]

I had the chemo. Not that bad. Part of the problem is that the chemo given for other cancers is far worse. My wife for instance had breast cancer chemo. Both her oncologist and mine made the point that breast cancer chemo has much worse side affects. So what is not that bad? For me I was 90% normal (maybe a little tired and achy) for the first two or three days after. Then I had about one maybe two at most fairly bad days 3 and maybe a little day 4. By fairly bad I mean tired and achy. Similar to the flu. But I went out and did things. My biggest fear of nausea next materialized and if it had they have great meds for that. Then 95% normal until the next infusion. Maybe the worst of it was constipation which I beat with Miralax. Ice on fingers and toes and chew on ice so no side affects there. Again nothing like I feared.

Schwah

[Olivia007 in reply to Schwah]

Thank u I will keep that in mind

[j-o-h-n in reply to Olivia007]

"my 2 other siblings are not speaking to my dad so it’s all on me."

That happens in the best of families....

Been There, Done That, and Have the Tee Shirt to prove it.

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 06/08/2019 12:13 PM DST

[Olivia007 in reply to j-o-h-n]

Thanks

[tango65]

One possibility is to consider the trials for Lu 177 PSM, a systemic therapy known to work for many patients. There are clinical trials, but they may require previous chemo.

clinicaltrials.gov/ct2/resu...

There is at least one trial that combines the Lu 177 PSMA with Keytruda, a check point inhibitor.

He could also consider Provenge and Xofigo when the abiraterone is stopped and possible radiation to some of the bone metastases.

[Olivia007 in reply to tango65]

He did provange 2016 no xofigo doctor doesn’t recommend it? Why I have no clue? I’m exhausted

Thank you for your thoughts

[tango65 in reply to Olivia007]

It is very frustating and stresful when the therapies are not perfoming as expected. Checkpoint inhibitors work in a low % of PC patients and they may have significant side effects. This is some info about Keytruda and prostate cancer:

ncbi.nlm.nih.gov/pubmed?ter...

prostatepedia.blog/2019/01/...

urotoday.com/conference-hig...

Lu 177 PSMA tratment could be effective in many patients, it has very ferw side effects and treats the cancer in any place (lymph nodes, bones and visceral metastases). I had the treatment in 2016 and the only side effect was some fatigue lasting 24 hours.

If the clinical trials are not a possibility, perhaps you could consider the possiblity of getting treatment abroad. Germany and Australia have centers with experience in using this treatment. I got treated in Munich.

[Shooter1]

With chemo, I went back to work next two day than took two off before I could go back to work as railroad engineer at age 68. Not bad until after #6 with Xtandi added. Reacted to Xtandi and finally cut dose in half to get QOL back. Combo of Xtandi in toxic dose and chemo (9 cycles) made an invalid out of me. Chemo alone and days 3 and 4 just to tired to work, never any nausea or constipation..

[Olivia007]

That’s kind of scary being my dad is older the invalid part. Thank u for sharing ur experience

[ctarleton]

As others have mentioned, some of these "checkpoint" drugs have not done very well in advanced prostate cancer, and have also come with significant side effects. This article mentions how only about 1/5 of the men showed a benefit in a prostate cancer combination trial involving the drugs nivolumab (Opdivo) plus ipilimumab (Yervoy), while around 2/3 of the men had serious adverse events due to toxicity and side effects, with some deaths reported. (An earlier study involving ipilimumab vs. placebo in advanced prostate cancer also showed poor benefits, but definite risks of adverse events, and even a few reported deaths during the study.)

ascopost.com/issues/april-1...

The risk/benefit/side-effects profile of trying chemo with docetaxel might actually be preferable, in comparison. Something to keep thinking about as all options are considered. In the end, it will still come down to individual patient decision-making, taking all factors into account. Just another 2 cents.... not a doctor.

Charles

[Olivia007 in reply to ctarleton]

Hello Charles thank you for your thoughts every article was going to tell me something good and bad that article obviously said something negative I read other articles that were positive things about checkpoint my dad‘s doctor is offering it and he needs to take all this blood work to see if he’s even a candidate for it it’s just very confusing to everything it’s like there are so many things on the Internet the doctors all have told me to stay off of it not all of that is true and everybody’s body responds to everything differently so again thank you for your thoughts but I probably think I will stay off of this forum as well because Provange he was on that too and we thought that would help them with a dead end so then the other things as everyone has their thought they’re theory at the end he’s 81 I asked point blank if my dad stops the injections e stop Zytiga how long does he have to live he said Hes got 8 to 10 years so that’s pretty much how he’s going to live anyway if he were to live to be 91 so at this point we’re just thinking to stop all taking medicine and just live out the best life he can all these injections pills and chemo therapy at 81 it’s just too much I don’t think it’s even worth it it’s the quality of life and not quantity if ur sick and tired

[ctarleton in reply to Olivia007]

It might not have to be an "all or none" situation, either. As I recall, in recent months his PSA was still down in the 1.0 range, give or take, despite creeping upward. He might be able to stay on his usual ADT, but perhaps first work with his doctor to play around with the Zytiga dosing vs. side effects for a while. That might include the Prednisone that goes along with the Zytiga, too.

Personally, I don't think Anybody can exactly predict an 8-10 year survival for any 81 year old man who has advanced prostate cancer. Not to say that someone might not live that long, but there could be others who might develop serious symptoms or die much sooner than that, particularly if they completely stop all treatments.

It might take many months for his PSA to rise to much higher levels, whatever is done. You may have that time to keep checking PSA, Alkaline Phosphatase, symptoms, etc., and doing some scans every now and then to check for disease progression, before totally stopping a treatment, or moving on to some other treatment mode.

If sometime you should want to explore the space beyond active treatment, these might be good conversation starters for him and among the family. Not endorsing any particular book or resource. There are many available for on-line review or purchase.

pbs.org/wgbh/frontline/film...

passing-on.org/

store.nolo.com/products/get...

I found the books Being Mortal by Atul Gawande and When Breath Becomes Air by Paul Kalanithi very good, myself, too.

Just some more thoughts... Meanwhile,

I really empathize with All you are doing in a caregiver role, in a situation with other siblings who for whatever reasons are not there with you "on the ground" with all the difficulties. There may be some face-to-face Caregiver Support Groups near where you live. One of them could be a great place to share stories, mutual support, and as many tears, laughs, and hugs as you may need.

Big Lupron Hugs,

Charles

[Olivia007 in reply to ctarleton]

Thank u😢

[CalBear74]

If you choose to drop consideration of formal treatments, drugs, chemo, checkpoint inhibitors, etc., you still have naturopathic complementary medicine (not to be confused with so-called alternative medicine treatments). Please review these posts. I am assuming your father is not using any natural supplements.

healthunlocked.com/advanced...

healthunlocked.com/advanced...

The following is also an important source of research information on inositol hexaphosphate, which I have been using for 4 years. The only side effects are minor.

ip-6.net

[monte1111]

Hi. Sounds like you need a day off. A couple of days. OK, a week at the beach. Sounds like your dad is like many of us elderly: stubborn. He's made his mind up against chemo. No one else will help you, and you have to decide. Giving up treatment would be easy. But not something I would do. I did 8 cycles chemo at 67 while living alone. Driving back and forth, etc. Now your dad being 81 may make a difference, but if doctor gives it a green light, I would certainly go for it. In the end, it's his decision not yours. I would suggest to him to try 1 cycle of chemo. If he doesn't like it, he doesn't have to buy the whole package. You did the best you could. Now go do something nice for yourself.

[Olivia007]

Thank u for your kind words I wish I could go on vacation but I have 2 kids and a husband to take care too.