Husband diagnosed 8/2017, PSA 556, bone marrow, bone and lymph node involvement, 10 rounds docetaxel, 2 months off before PSA started to rise. Started xtandi and got to nadir of .78 then in April of this year docetaxel re-challenge when PSA rose over 6. After two rounds ended up in ICU with colitis and chemo stopped. Then Provenge while waiting for trial to open. Has had two infusions of ipilumumab and nivolumab as part of the re-formulated checkmate 650 trial- but PSA seems really high and it feels weird just watching it go up and up! Corresponding scan progression in bones. How long does one wait before it is urgent to move on? Also has continuously been on Lupron and xgeva... Feeling sort of panicky.
4/24 6.78 1st docetaxel
5/17 4.13 2nd docetaxel
Hospitalized for colitis- stopped chemo
6/4 2.31
6/14 1.71
7/26 2.59 1st Provenge tx
8/7 4.63 2nd Provenge tx
9/18 15.85 3rd Provenge tx
10/9 26.08
10/30 38.71 1st trial Infusion
11/20 51.28 2nd trial infusion
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joekaty
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PSA increase that coincides with progression on scans. Scans were done before treatment initiated and scheduled now to be done at time of 4th infusion. Just seems like that might be a little long to wait with rate of PSA increasing...
What does your oncologist say? Does it take time for the therapy to kick in or are the results immediate? What were the biopsy results? MSI-hi/dMMR? BRCA1/2? Possibly, chemo may go better this time after all the immunotherapy.
This is, pardon my language, very fucked up but they actually did not give us the biopsy results- just sent them to the drug company and Dr. says he doesn’t have them or know what they resulted as other than...shocker...prostate adenocarcinoma. He’s negative for BRCA 1/2. Tumor burden low- like 2. MS-stable. Did say time for effects to kick in but by now they he should be showing PSA decline. I think another infusion of the trial drug will kill him.
PSA isn't a good indicator for immunotherapy effectiveness. That said, with neg. BRCA 1/2 mutations, low tumor burden, and MS-stable, I think the likelihood this will help him is small. Discuss with his oncologist.
Thank you. I did know that this treatment would be extremely unlikely to benefit him but he was strongly encouraged to try it by the oncologist who is running that trial site. Very frustrating. I do believe his participation in light of his lack of those markets will benefit others by narrowing down who to target with success...and maybe his side effects will show them that even the reformulated dosages need a lot of tweaking. Who knows...
Yes he did casodex in the hospital at diagnosis and then was switched to first round of docetaxel while still in the hospital. After either 9 or 10 rounds of docetaxel we went to MD Anderson and they took him off of it. After two months PSA rising again and started xtandi which lasted about six months - got him to his lowest PSA at least. Chemo works well for him I’m just not sure his body is really up for it now...doesn’t feel like there are any great options.
There is another chemotherapy available called Jevtana (Cabazitaxel) Many have reported less side effects with it VS. Taxotere (Docetaxel).
There is also the option of doing chemo weekly at 1/3 the dose. This approach has been used succesfully with elderly patients and can also be used for patients with higher sensitivity. And If things don't work out he's only got 1/3 the dose in him. It's much less of a commitment.
If the original chemotherapy was effective, then I like gregg57's idea of repeating it but with a more tolerable dose.
The standard dose for docetaxel is 75 mg/m2 every 3 weeks, i.e., 75 milligrams per square meter of body area (estimated by taking the patient's height and weight), infused once every three weeks.
Studies have been done with 50 mg every two weeks, or 25 mg every week. This is the same total dose over the same total time as the standard dose. From what I've read from at least a couple of patients, the treatment is very effective and the side effects are not as bad. Some articles say it's just as effective as the standard dose.
I also like gregg57's cabazitaxel suggestion. Another suggestion is one of the Lu-177 PSMA treatments.
As for when to start treatment, if the current treatment is no longer working, and I assume it is not, then I don't see any reason to delay. I think that, to stay sane, a lot of health professionals try to organize their work into a routine and a schedule - but pushing them a little doesn't seem like a bad idea to me.
After I wrote my reply, I did realize the same thing you said in your reply: Docetaxel was working so go back to that first and modify the dose and interval. Go to second-line Cabazitaxel if/when Docetaxel becomes ineffective.
Alan, you remember I had nine 100 mg/m2 intravenously of Taxotere alternated weekly with nine 20 mg/m2 as a 24-hour intravenous infusions of Adrimyacin during a six month period; coupled with orals. Lesser dosages with longer intervals are “safe” for the bulk of people in a world of “do no harm or one gets sued”... good luck all.
I didn't remember the dose. Did you mean to say 100 mg/m2 every two weeks? I thought 75 mg/m2 every three weeks was the standard dose. 100mg every two weeks over a period of 18 weeks would be 900 mg/m2 total compared to 450 mg/m2 in the standard, i.e., double the usual dose.
I do recall that you had a great response to chemo and the fact that you're still here many years later testifies to that.
Yes Alan, that is correct! It was double the standard: plus Adrimyacin and Erustimine and Ketokonazole. Plus Prednisone. It was no picnic, however, with Zofran to take for nausea, an understanding employer, and plenty of rest, I prevailed. It became his standard protocol after the trial.
Let me add one statement which he made during the first meeting, which lasted over two hours, “we found out in 1978 how to kill cancer, but the problem was that we were killing the patient first through treatment. This has been my major research to determine dosages to kill the cancer and not kill the patient. According to my research, I think that I have done that.” Then he used the lab mice analogy. “Every way that a slice and dice the mouse, the cancer is killed.”
In treating breast cancer the initial dose is 100 mg/m². If tolerated, it is maintained. If not tolerated the dosage is first reduced to 75 mg/m². All the down to 25 mg/m² if need be. All every 3 weeks for six cycles. My trial was every 2 weeks. My cousin was treated at Baylor College of Medicine, like me, alternated Taxotere and Adrimyacin. She had six infusions of each.
Doctor Amato taught and did his major study at Baylor College of Medicine. It is where I first became his patient. He also told me that Prostate Cancer and Breast Cancer we’re genetically linked.
My point is that is both, the initial dose was the same; and if tolerated, remained the same. If not, then reduced. Second point, research has its risks. I understood that and considering at the time, all documentation gave me 2-4, maybe 5 years to live, I volunteered to be a “guinea pig”. He also told me that he could buy me ten years; five years later, he can be an extension of another ten years; and at the ten year post-trial mark, he told me that I was there -cured! Being a realist, I did not embrace the cure word until two years later in 2016. Community Medical Oncologists are dictated by the FDA approved treatment protocols.
In my opinion, the trick is how to kill the cancer as in 1978, without killing the patient and not get sued....... today it is still a waiting game on cure and that takes plenty of time measured in years/decades.
You took a big chance and won a big reward. I remember you were off all treatment for some time after your chemo. Are you still off all treatment? How long has it been now? What's your last PSA reading?
I admire you for going through this. I remember your determination.
People should of course know that (IIRC) some others on Dr. Amato's protocol haven't done as well as you. You were a standout. But a win is a win and it offers good news and hope for many others.
I came off of Lupron in February 2010. In an effort to re-start the production of testosterone, I started 4mg of Androgel twice a week. My last set of scans in November 2016 again reflected no metastasis. Alan, my last PSA in October was <0.0. I have been at least <0.1 since December 2005. Since using low dose Androgel, my T ranges from 350 - 700.
Of the original 56 cohort, nine had a complete response. I have done the best. But then again, I started monthly PSA’s in September 2003 and when PSA jumped from 12 to 24 to 32 in ten weeks, I had two complete sets of scans by two different ROs. They revealed mets and I started the trial six weeks later. So, essentially chemo as soon as mets detected....... Timing and scope of disease are factors often overlooked. Part of Dr A’s hypothesis included, “it would seem that to bear chemotherapy and hormone therapy when the tumor burden is minimal and the body strong”......
I'd be pretty sure that you have already read the Full Prescribing Information for both ipilumumab and nivolumab. The documented Adverse Events and Side Effects for the "ipi" can be pretty rough, and sometimes downright dangerous. If I were in your shoes I'd be watching all symptoms and blood test results like a hawk. Discussing frequently with the doctors. Maybe talking about possibly reducing dose or stopping "ipi" first, if necessary, depending on symptoms?
(As for the PSA roller coaster ride. Lots of men here have been on such rides. From PSAs in the several hundreds or thousands, back down to low PSAs, and back up to PSAs in the 50-100 range, or even higher in some cases. Knowing that one was/can be alive and still relatively symptom-free sometimes, even with higher PSA numbers, can take a bit off of the natural anxiety as one watches a PSA going up. Easier said than done, though.)
Good luck managing the side effects and navigating the treatment decisions.
Thanks everyone- sorry- the flu hit our house and 3 of our 6 kiddos so we’re barely functioning! I appreciate all the advice. Our plan had been to start jevtana next, although Joe feels so bad he increasingly doesn’t want to. I also like the idea of lower dose chemo...
My husband started jevtana/ Carbo combo 1/2 dose 2 weeks on 1 week off seemed to work for about 3-4 months. Side effects not bad at all except my husbands platelet count is crap. Waiting on scans as PSA has started to rise again. It might get your husband some more time while we all wait for the next stepping stone.
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good luck all.
What to do next for treatment
Next line of treatment: too many options
Torn between two approaches for next treatments
Moving on up,whats next.
Moving forward with treatment: Xtandi and Provenge
