Jimmy Carter and Prostate Cancer - Advanced Prostate...

Advanced Prostate Cancer

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Jimmy Carter and Prostate Cancer

gusgold profile image
26 Replies

Check this out...3 out of 10 men with CRPC who failed Xtandi had great results using Ketruda..one guys Psa went from 2500 to .1

prostatecancernewstoday.com...

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gusgold
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26 Replies
Dan59 profile image
Dan59

Gus ,In the results I have 3 of the men went to less than .2, but another 3 had stable disease at 37 40 , and 50 weeks. In my world stable disease is a response, I hope this works, the other pd1 inhibitor nivolumab did not work that well, I know that pd1 inhibitors all all the rage now in other cancers, great find Gus.

Dan

Neal-Snyder profile image
Neal-Snyder in reply toDan59

Are you saying you read a different article, Dan? The one in Prostate Cancer News Today that Gus linked us to has 3 men with significantly elevated PSAs, after ADT or Xtandi who go under 0.1, & the same 3 men are stable for many weeks. The other 7 had no benefit. So more research is needed.

Dan59 profile image
Dan59 in reply toNeal-Snyder

Yes Neal, I did read a different paper on the same article that seemed to say another 3 had stable disease, for the life of me I can not find it now, but will keep looking

Dan59 profile image
Dan59 in reply toNeal-Snyder

Here it is Neal , the actual paper from Oregon Health science, personalgenome.com/wp-conte... it says clearly "Of the remaining 7

patients, three had stable disease of 30, 47 and 50 weeks,

which are ongoing, while the remaining 4 patients did

not have evidence of clinical benefit." it is the same study and to me 50 week ongoing stable disease is a benefit

Neal-Snyder profile image
Neal-Snyder in reply toDan59

Thank you, Dan! Those results are definitely better than what Prostate Cancer News Today reported. Sloppy journalism pisses me off!

Dan59 profile image
Dan59 in reply toNeal-Snyder

with those kind of stats there should be a time for all of us to try this

in reply toDan59

It's good. It's good. But temporary. There is still more to the story. Or something else to the story.

Sisira profile image
Sisira

It is quite interesting and exiting to learn of this new Keytruda ( pembrolizumab ) Immunotherapy acting on the immune T-cells leading to the destruction of tumor cells when we are tired of using the years old Hormone Therapy which is only a palliative treatment protocol.

However more research and proof is needed regarding its effectiveness to reach at lest 50% success rate with an appreciable stable period. The experimental stage is quite understandable.

A nosedive of a PSA from 2503ng/ml to 0.1ng/ml is unbelievable when 7 out of 10 do not show any response! Or they should have dropped this unusual result to safeguard the credibility of the trial.

I am keen to follow the future developments in research work pertaining to Keytruda Immunotherapy.

Thanks for the post.

Sisira

Arcticfox44 profile image
Arcticfox44

What does this have to do with Carter?

in reply toArcticfox44

keytruda - the drug he got, for melanoma I think.

Pennysue1 profile image
Pennysue1

I was wondering the same thing - I guess Carter has prostate cancer

My husband Mike has been on zytiga for two months - 1st month was having radiation too - doing great - any feedback on zytiga ?

Neal-Snyder profile image
Neal-Snyder in reply toPennysue1

If you do a search for Zytiga in this Advanced Prostate Cancer group, various people have discussed it. It's been taking care of me for almost 2 1/2 years. The only side effect I have is easy bruising from the prednisone. There's a fairly wide range of time periods that it works for different guys.

Pennysue1 profile image
Pennysue1 in reply toNeal-Snyder

That sounds promising for my husband Mike - thanks - any thought of what you might try next ?

Penny & Mike

The Villages, FL

Neal-Snyder profile image
Neal-Snyder in reply toPennysue1

My oncologist & I have talked about Ra-223, Provenge & Xtandi. He's following research about whether to combine 2 of them. Via videoconference at an Advanced Prostate Cancer group at the Cancer Support Center in Walnut Creek, CA, oncologist Ed Weber in Seattle recommended that I have the first 2 while I'm still on Zytiga, since my PSA is not undetectable (it's over 30). But Kaiser won't do anything like that without proof from clinical trials, which may be another way of saying without Medicare reimbursement.

Terje profile image
Terje in reply toPennysue1

I've been on Zytiga for 42 months now. My PSA starting going up (about a year ago) and in agreement with my oncologist I started taking it with my evening meal (which supposedly increases the potency). Try to eek out as much as possible from each medication :-)

Neal-Snyder profile image
Neal-Snyder in reply toTerje

That's very interesting. I knew there was some evidence for that, even though it's "supposed to be" taken on an empty stomach. Is there research that convinced your oncologist? Did your PSA stop increasing or increase more slowly when you started taking Zytiga with your evening meal?

Terje profile image
Terje in reply toNeal-Snyder

Yes, it did make a difference for about 6 months. I believe it was the reason that the PSA progression slowed down markedly. Then I added Lynparza (parp inhibitor) since I had been diagnosed with a BRCA2 gene mutation. Since then the PSA has been going down from 3.9 to 1.7

I had read somewhere that there had been testing with Zytiga together with meals which didn't cause any side effects. My oncologist and I agreed it was worth a try. I changed from taking the Zytiga in the morning to after dinner around 7pm which is pretty close to my bed time!

You can read some preliminary research here:

prostatecancerinfolink.net/...

Neal-Snyder profile image
Neal-Snyder in reply toTerje

Terje, this is very helpful. Your experience is certainly consistent with those of the men in the preliminary research whose time on AA before progression was extended. The safety finding is in there: no observable differences in toxicity between men taking AA with vs. without food. There's a link to a completed short-term Phase 1 safety study with 25 men. There's also a link to a 5-year Phase 2 study with 72 men & an est. completion date of Jan. 2017 (no interim results provided).

Congrats on your extended time on Zytiga & your successful efforts to extend the time, twice. I've read that BRCA2 is primarily found in Ashkenazi Jews (I'm one) & Icelandic people (are you either?).

Did you do genomic testing with The Foundation or Caris to diagnose your mutation? I guess you had a satisfactory experience? I'm looking into that, but I couldn't provide tumor tissue from my RP; it was 13 years ago so the tissue was destroyed 2 years ago. How long has it been since you added Lynparza?

Terje profile image
Terje in reply toNeal-Snyder

Hi Neal!

I'm Norwegian. The vikings settled Iceland about a 1000 years ago, so yes, I'm sure there is BRCA gene there transferred from Norway!

I had my test done at Virginia G. Piper Cancer Center in Scottsdale. The lab they used was Ambry Genetics.

You could also check out color.com/ They do the screening for $249.

No need for tumor tissue. Just spit in a cup!

With your ethnic back ground I think it would be worth your while. One a certain level I consider myself lucky to have a BRCA2 gene mutation as this has provided me with one extra bullet in the arsenal against this cancer.

I started with Lynparza (my oncologist had to fight with the insurance company since it is not yet approved for Prostate Cancer) in April 2016. My PSA has since been on a slow but steady decline. I have no idea how long I can expect this to continue, but am enjoying the trend as long as it lasts!

Neal-Snyder profile image
Neal-Snyder in reply toTerje

Fascinating info, Terje. Would you mind emailing me so I can communicate with me more directly? Neal@yvonnegarcia.net

Thanks,

Neal

Arcticfox44 profile image
Arcticfox44

I don't think Carter has prostate cancer, unless that's a new development in recent weeks.

Pennysue1 profile image
Pennysue1 in reply toArcticfox44

No he did not - he had melanoma cancer

Neal-Snyder profile image
Neal-Snyder in reply toPennysue1

And Keytruda did wonders for him, despite his age, so it's sometimes called the Jimmy Carter drug.

Pennysue1 profile image
Pennysue1 in reply toNeal-Snyder

That makes sense

Arcticfox44 profile image
Arcticfox44

Yes that's right.

Dan59 profile image
Dan59

Gus , Here is the paper from Oregon Health Science University , It seems to say in addition to the 3 outrageous complete reponses out of 10 another 3 had stable disease, at 37, 40 and 50 weeks ongoing. personalgenome.com/wp-conte...

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