my son is age 40. dx 1/2018 PSA 1250 extensive bone and lymph nodes. started on lupron, xgevia and 6 rounds of chemo.
good response psa down to 7 in June but now rising to 20.
not sure what to do next
can do zytiga and or r-223 or try to get into a trial with zytiga and a drug being tested that was good for breast cancer if you have a certain mutation. however need another biopsy with only a 25% chance of having the mutation.
did foundation testing in Feb and it showed no mutations
docs are at the u of Chicago and met Dr Hussain at Northwestern
worried about waiting a month for results with PSA Rising and not sure if he would qualify
going back to dr next week for the biopsy of we decide to go that way. thanks for any advice
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I agree with Yost. I was in a similar situation. My doctor had suggested going on Xofigo, but when he saw how fast my PSA was rising (doubling every 5 weeks) he suggested starting Zytiga right away and skipping the Xofigo for now. The 6 Xofigo treatments at 4 week intervals will stretch out to roughly 6 months. They typically do not reduce the PSA, nor do they fight cancer outside of the bone mets.
Maha Hussain is among the best. It sounds like he loses nothing by getting the analysis done for the trial. PSA of 20 is still pretty low compared to where it was. Since he can't do Xofigo and Zytiga together, I think he is better off doing the Xofigo first because the treatment duration will be a lot less (hopefully!). There is now a CTC test of AR-V7 which will let you know in advance if Zytiga/Xtandi will be effective for very long. I don't know if insurance will pay for it.
Neither lymph node nor organ mets are a disqualifier, to my knowledge. Where did you hear that? Xofigo would work on his "extensive bone" mets only. He would have to use EXPERIMENTAL radiopharmaceuticals (like Ac-225-PSMA in trials at Weill Cornell and Heidelberg or Lu-177-PSMA) to attack the other mets.
--------------------------- INDICATIONS AND USAGE --------------------------
Xofigo is an alpha particle-emitting radioactive therapeutic agent indicated for the treatment of patients with castration-resistant prostate cancer, symptomatic bone metastases and no known visceral metastatic disease.
I believe they do allow lymph node mets up to 3 cm in the short axis.
Thanks - I did not know about the exclusion for visceral mets. But it doesn't exclude LN mets, which is what the OP's son has. Six months (6@ 4 week intervals) is still less than the expected time on Zytiga. The median time to PSA progression on Zytiga after chemo is 10 months, so he would have to wait 10 months (half the men would have to wait more than 10 months, half less) to start Xofigo if he starts Zytiga first, but he only has to wait 6 months to start Zytiga if he does Xofigo first. Unfortunately, he can't do both concurrently.
The problem I see is the same one I had. Fast doubling time and what looks to me like aggressive disease. LN are OK up to 3cm in the short axis as far as I could find. Not sure how big his LN mets are.
If LN are not a barrier, then I agree with Tall_Allen. I would do Xofigo first under these circumstances. And Gregg57 is right, his PSA is likely to continue upward. My MedOnc looks at three things these days—what is my PSA doing? What are the scans showing? How do I feel?
Do u think he might take the Guardant 360 blood draw genetic test. Would add what dna mutations could be also involved, that are moving through blood stream?
That's always an option, but such tests seldom find anything useful. There aren't a lot of personalized therapies available yet (PARP inhibitors,platins and sometimes Keytruda is about it so far). There are some in clinical trials.
We were told Xofigo would not be right if there is soft tissue involved. Although my husbands bone mets have increased, the lymph nodes and prostate cancer growth has slowed down. Stopped chemo and going onto Zytiga. Dr’s said next step would be xtandi and possibly radium treatment. Of course the doctor’s comment was that radium is so expensive, you would die with an empty estate. Did not think his comment was appropriate.
You're correct- you do not qualify for Xofigo if it has metastasized to other places than the bones ( at least here in Canada). There is also no assurance that Zytiga or Xtandi will work. My husband was on it for 1.5 months and his PSA went from 14-688. The cancer metastasized to his lungs. I would not recommend waiting a month for the next treatment option.
I’m being treated at U of Chicago, and Think they are cutting edge, open to new ideas, not restricted by strict adherence to the “standard of care.” They also have a tumor Board, or something like it, where the doctors discuss cases and plans. And Dr. Hussain at NU has an even better reputation.
I started Zytiga about 30 days after I finished Docetaxel, and glad I did. I would try that while you wait for the trial, if both are possible.
We’re also at U of C with Dr Stadler. Past two PSA rose. 1.3 to 1.6 and now 2.2. New scans ordered and Zytiga or Xtandi on the horizon. Husband is 49, dx 7/2017 PSA 489 Gleason 9 Mets to bones [shoulders to pelvis) and lymph. We’re worried again and feel like we’re starting over.
I’m surprised you’re not on Zytiga already. To get aggressive treatment, you need to ask for it. I assume you had chemo when diagnosed. I would be asking for genetic testing now. I do know their oncologists meet periodically to discuss patient goals and progress, Hang in there, it’s a long fight.
The only further opinion worth getting if you’re already at a place like U of C would, in my opinion, be MD Anderson or Mayo
Thank you! He did have chemo (docetaxel) upfront. Because he was so young he also had genetic testing done to which they found none. He also had genomic testing done at Weill Cornell with Dr Misha Beltran (now with Dana Farber). We go back to MO on 4/23 to discuss scans and next treatment.
he had new scans done and now needs the biopsy to see if he qualifies for the trial .it is abiraterone and olaparib.
he cannot start zytiga if he wants to wait to see if he qualifies for that trial.
waiting to compare scans done in June to scans done last week and new blood work again tomorrow.
if he does not qualify then we decide if it is radium 233 or zytiga
we are all considering all the options. it is the waiting time to qualify especially if he doesn't.
another issue on another topic
I have read several articles on the ability of breast milk to fight cancer tumors but he is so far refusing unless I can give him proof it might work. any data on that . i have a great source for the milk .
also has anyone tried the Gerson therapy ? it only makes sense to detox the body so immune system can take over.
everyone has responded so quickly and with such insight.
this has been a shock for us.
my husband had prostate cancer 10 years ago but it was early .
he had it removed and is fine.
it is now my mission to educate every man I see about early testing no matter your age. hopefully i can prevent another man from facing this disease. again thanks for all your advise
Be careful of quack cures like breast milk and detoxing. You are a sitting duck for hucksters right now. Here's what the NCI has to say about Gerson Therapy:
We were advised to take any trials , Dave was 62 at diagnosis last year. T4M1N1 . There are new drugs on the horizon for prostrate cancer . Now on Xtandi.
everyone on this site is so encouraging and caring. we are waiting to do a biopsy to see his DNA for a possible clinical trial . I have a lot of ups and downs about what is ahead but at such a young age I worry that treatment options will run out. I have gotten a lot of knowledge but all the prayers and support are wonderful. Again I try to spread the knowledge about this disease to men I meet and know. I look at life differently now both good and bad and am trying to have God give me the resolve to accept whatever comes
we have not had good success with northwestern.. my son tried to get into several trials at their request and while we waited his psa has gone way up. he never qualified for the trials and they should have known that before they kept us waiting. he is now on his third round of chemo in two years which will disqualify him from a lot of trials. future looks pretty uncertain
not sure what comes next...running out of options.
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