advice needed for treatment after che... - Advanced Prostate...

Advanced Prostate Cancer

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advice needed for treatment after chemo with rising PSA

Eabradley profile image

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

35 Replies

I wouldn’t want to wait either. I’d be leaning toward Zytiga, but what does his doctor recommend?

Eabradley profile image
Eabradley in reply to YostConner

one at northwestern is running the trial and said he can wait as long as no other symptoms. waiting to see his reg dr st U of Chicago next week

YostConner profile image
YostConner in reply to Eabradley

I’m surprised. I’m on Xtandi now. Makes me very tired, but it’s driving PSA down. I’m glad your son isn’t in pain!

in reply to YostConner

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.

But, Tall_Allen, can he do Xofigo with lymph node mets, or is it actual organ mets that are the disqualifier?

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.

in reply to Tall_Allen

From the prescribing sheet:

accessdata.fda.gov/drugsatf...

--------------------------- 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.

Tall_Allen profile image
Tall_Allen in reply to

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.

in reply to Tall_Allen

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?

podsart profile image
podsart in reply to Tall_Allen

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?

Tall_Allen profile image
Tall_Allen in reply to podsart

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.

podsart profile image
podsart in reply to Tall_Allen

thanks

My MO discontinued Xofigo because I developed soft tissue mets.

Ldb01 profile image
Ldb01 in reply to Tall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply to Ldb01

There is no exclusion for lymph node mets - only for visceral mets. But it only works on bone mets.

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.

Schwah profile image
Schwah in reply to Tall_Allen

Where is that CTC test offered Tall Allen? Is it widely available if you’re willing to pay out of pocket ?

Schwah

Tall_Allen profile image
Tall_Allen in reply to Schwah

I know Oncotype offers it:

oncotypeiq.com/en-US/prosta...

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.

mdiaz76 profile image
mdiaz76 in reply to Canoehead

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.

Canoehead profile image
Canoehead in reply to mdiaz76

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

mdiaz76 profile image
mdiaz76 in reply to Canoehead

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

Tall_Allen profile image
Tall_Allen in reply to Eabradley

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:

cancer.gov/about-cancer/tre...

Also, people who use alternative and complementary medicine generally do not survive their cancers as long as people who follow standard protocols:

pcnrv.blogspot.com/2018/07/...

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.

My doctor put me on Xtandi when I got done with chemo. I get the monthly lupron and Xgeva shots. As well.

What chemo drug was used ?

He may qualify for the Lu177 clinical trial. It would be worth checking into.

We dealt with prostate cancer at a young age too. How was his blood work, besides PSA, at diagnosis? How is he handling the side effects of treatment?

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

I also use Dr. Maha Hussein at Northwestern

I got diagnosed with stage 4 prostate cancer metastasized to bone and lemph nodes in February 2018

At first I went to VA hospital - they said they couldn’t do much for me - they did give me chemo and Lupron shot -

Then I got a second opinion with Dr. Hussein

Best thing I ever did - I think she’s one of the best doctors in the US

But I do live in St. Louis and it takes about 5 1/2 hours to get to Chicago

But now two years later My PSA is 0.00

And my last two scans showed no evidence of disease - they are on the cutting edge of treatment

Actually my PSA is 0.002

And has been there for about 1 year

without -Northwestern -and Dr. Maha Hussain

I am pretty sure it would’ve not got that low -

so of course I would highly recommend Northwestern and Dr. Hussain

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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