To recap - my 1/8/19 Axumin scan found no evidence of metastatic PCa. Based on a tip from TA, I then applied to the following clinical study (Yale location):
NCT03739684, PyL 3301, Study of 18F-DCFPyL PET/CT Imaging in Patients With Suspected Recurrence of Prostate Cancer clinicaltrials.gov/ct2/show...
The people at Yale were amazing - they got the ball rolling very fast and I was scanned on Thursday 1/24/19. BTW, they are actively recruiting participants in their study...and again I highly recommend them, particularly Dr. Svetlana Vassilieva.
The Yale scan showed a regional recurrence in a handful of pelvic area lymph nodes but no distant metastasis (nothing noted in the bones).
The next week I began systemic treatment - Firmagon. Just yesterday abiraterone and prednisone was added to the mix. Today I met with my local RO to discuss the results of the 18F-DCFPyL scan. My RO consulted with his friend and former colleague Dr. Anthony Zietman (Mass. General) and concluded that it was wise and worthwhile to treat the lymph nodes with RT. The plan now is to begin the RT in 2 months and in the meantime continue on with the ADT to weaken and sensitize the cancer cells in advance of RT. ADT would then continue on for a 2 year period.
My question now is - what about the abiraterone/prednisone component of the current treatment plan? I asked my RO and he said that he would probably stop those now (I'm only 2 days in), but recommended that I refer the question to my MO. I've emailed that question to him and I'm awaiting a response. Any thoughts out there on any of this?
Gene
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shueswim
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It sounds like an excellent plan! If you are tolerating Zytiga well, why not stick with it for the two years? I know two guys who were able to get it and used it as part of their radiation therapy. It might help the radiation work better.
My RO said the other way around seems to work too...that RT can, for reasons not well understood, help when moving on later to abiraterone. Interesting!
No issues tolerating the Zytiga so far. Any reason to save that bullet for down the road. Looks like studies have concluded that there is a survival benefit to using it early, but I don't know whether those conclusions encompass patients that are pursuing the RT option as well.
I don't believe in the philosophy of "saving that bullet," especially if you are going for the cure. Why not optimize your chance of a cure now? There will be other medicines later if it doesn't work, and resistance isn't as big a factor when used this early. I know of one Phase 2 clinical trial investigating this, with results expected later this year:
ADT is thought to increase the effectiveness of RT for 2 reasons: (1) it sensitizes the cancer to radiation, (2) it "cleans up" any remaining cancer cells not killed by the radiation. Especially with your known cancer in the lymph nodes, it is important to make every effort to accomplish this. (Remember that the dose to pelvic LNs is only about 50 Gy, so the radiation needs all the help it can get).
I should also mention that it is important to expand the radiation field beyond the traditional (RTOG) recommendation. I'm sure Zeitman knows about this:
Ok, as much as I've learned, I keep learning that I haven't learned enough. I'm one whose PSA never went to zero after RP. All treatment, surgery, imaging done at MSKCC. MRI and CT (no PET) indicated a "suspicious" lymph node. Started ADT with Lupron/Zytiga last July and did 40 RT treatments from mid-Sep through Nov. I'm remaining on ADT through this April.
I didn't ask about radiation dosages, or targets or size of field. Obviosly, I am also ending ADT after 9 months vs the 2 years mentioned here. I have great faith in MSKCC and Dr McBride, my RO who's managing all my treatment, but am I not managing my own treatment closely enough? Should I suggest staying on ADT longer? Should I ask for and review my RT treatment settings/dosages, and if so what do I look for?
All good questions...and I'll defer to those more knowledgeable. But I will relay my earlier experience with ADT duration.
2 1/2 years ago after my RP my was zero...but I was G9 and had positive margins. I opted for adjuvant radiation - but no one suggested ADT. Based on my own research and support groups like this, I insisted on ADT. What I was seeing was 12 to 18 months for men in my situation. My urologist however was very much against it and convinced me to compromise with a 6 months duration. And...there was no advice concerning starting it weeks or months in advance of the RT. My first injection back then was days before the RT commenced. Fast forward to last November when I visited Dr. Matthew Smith (MGH) upon BCR. Sure enough, one of the first things he asked me was "why only 6 months of ADT?" In fairness I think the protocol was (is?) still evolving and there may be no right answer. But personally, if I'm going to err it's going to be on the side of aggressiveness from now on.
Thanks Gene. My RP was negative margins and the post surgical pathology even lowered my Gleason from 8 to 7. The expectation was no additional treatment, bur then the PSA was .77 at six weeks and dropped to 0.48 over the next couple months, but then started rising again. My RO did reccomend starting the ADT in July and waiting 8-12 weeks for it to weaken the remaining cancer before radiation. Not sure why you didn't get the same advice. I know you're right about the protocol being different for different patients & is a work in progress across the board. There are also new developments over time. Zytiga as a first line attack in the ADT arsenal is new because of recent FDA approval for earlier use. Thanks for your input & feedback.
If you look at that last reference, you will see that the research was done at MSK - they are the leaders in this field, but you should feel comfortable asking questions and your RO should discuss the answers with you. I know that they routinely give 72 Gy and treat an expanded field. I don't know what dose they routinely deliver to the pelvic lymph nodes (probably around 50 Gy). You can ask for a meeting, maybe with the physicist, to discuss the "dose/volume histogram" and the "isodose curves." MSK has been a leader in setting "dose constraints" and defining "organs at risk." The duration of ADT is largely a matter of judgment - at low PSA, they can probably give less, but with a suspicious lymph node they may want to give more. Again, this is something that you can and should discuss with them. It's a commitment on your part, and I think you will feel better if you participate in the decision making. I think that by going over these things, you will feel a great deal more confident in their competence and the care they have taken in the radiation planning. Here are some questions I recommend patients ask:
Thanks Tall Allen. I do feel confident in their care, which is probably why I comfortable with their recommendations and didn't feel the need to question very much. At the same time, I'm inclined to be as informed as possible. I know my Dr the would be happy to discuss those things with me so I will go over your list of suggested questions and fire some off at him. Thanks for the info, much appreciated.
This issue of "parallel vs serial" treatment is a regular question for me. I understand that we have evidence that adding Zytiga to ADT treatment improves time to castrate resistance. Are there any studies that compare survival times doing ADT and Zytiga concurrently vs. ADT followed by Zytiga?
Thanks but I am confused how that works. If I take ADT and Zytiga and later become castrate resistant I would continue to take Zytiga (and probably ADT as well)?
I think I misunderstood” STAMPEDE and LATITUDE found that combining Zytiga and ADT improved survival compared to ADT alone, even if Zytiga was used later”. “used later” does not mean the same patient used it later. You are saying a different member of the cohort used it later in their treatment,
Wow, and I have been counting on a combination of PET/Axumin and CT scans. The fact that the Yale scan showed mets in pelvic lymph nodes and the PET/Axumin did not is amazing...and instructive for me. Thanks for posting this!
BTW what’s your current PSA, and what was your Gleason score?
G9. PSA undectible for 27 months prior to BCR in Sept '18 when it registered 0.5. Since then it rose to 2.3 on the day of the scan 4 months later. PSADT of 2 months.
Interesting! Glad you caught the mets on the second pass at Yale. What was your PSA at the time of each of the two scans? Axumin may be better at catching bone mets than soft tissue mets. Hopefully the DCFPyL tracer will soon get FDA approval.
I know that HT improves the effectiveness of RT but can’t comment on first vs second line ADT as I’ve only used ADT3 with RT. I’ll bow to TA on that.
I had my prostate removed in 2015 6 months later psa started to rise so I did 36 radiation treatments at Shands at UF. 6 months later psa started rise again. My gleason score was alway 4+3. Shands did a Axumin pet and said the cancer was in my lymph nods. There was a flash on one of my ribs they ignored, declared me metastatic and wanted to start lupron.
I went another MO in Ft Lauderdale and he had me do a 3T MRI. At the same time I contacted Dana Farber about a trial and sent them all my records and flew to Boston to see the MO in charge Dr Chaudhery.. They came up with a plan to do SBRT on my rib and RT on lymph nodes.
In the meantime my MRI came back and my lymph nodes were negative. Psa at this point is 2.0.
Final plan SBRT to rib (trial), Lupron, Zytiga and Predesone for 2 years. One year in and my psa and testosterone have been undetectable for 6 monthes. They are going for a cure.
I have lost 16 lbs. from the Zytiga, had to buy new pants. and work out regularly to offset the Lupron. The worst side effects I have had is the weight loss from the Zytiga and hot flashes . I take Venflaxine 75mg for the hot flashes that helps some and suffer through the rest.
That's the first I've heard of weight loss as a side effect of Zytiga. ADT in general causes a risk of weight gain - I put on 20 lbs in my earlier 6 month interval (w/Eligard). What is it about Zytiga that would cause a weight loss?
I’ve lost 20#’s on Xtandi, which I attribute to loss of appetite and nausea. But, also have constipation from pain medication. Those three together resulted in weight loss.
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