Info

[GeorgeGlass]

I'm 51, had gleason of 4+4 and 4+3 in two cores. Treated with IMRT and brachy, which didn't work. PSA went from 8 before treatment to 38 after treatment. NIH scans showed abdominal aortic lymph nodes involvement and some other spots in the prostate. Started Lupron in Aug 2016 and PSA was last at 0.09 for a few months in a row. Thinking about a few options to pursue such as: Zytiga or intermittent pause to let cancer be identified on scans and possibly do a biopsy for tissue to use in genetic testing/precision medicine or just stay on the Lupron alone until it fails and then try something else (sequential approach).

[Darryl Partner]

Re your comment "do a biopsy....". You almost certainly have sufficient tissue for genetic testing from your (diagnostic) biopsy. You can proceed with test seeking today.

[GeorgeGlass in reply to Darryl]

Thanks Darryl, The original tissue isn't enough for the 20 unstained slides needed to do the genetic testing so I need to do a new biopsy on the cancer but the last scans were so small they couldn't be sure a biopsy would even find the cancer. Maybe I should do the intermittent pause from the Lupron and then do scans 1-2 months later, increasing the likelihood that the cancer can be found and biopsied (yielding adequate tissue for genetic testing). Your thoughts?

[Darryl Partner in reply to GeorgeGlass]

If Lupron is working for you, then going off it entails a bit of risk of allowing a (possible) tiny metastasis to grow; perhaps to spread ......is that risk worth the chance that going off lupron will allow your tumor to be imageable and a new biopsy will lead to a test that provides useful info?

[GeorgeGlass in reply to Darryl]

I know what you mean. One of my doctors feels I should wait while the other thinks I could try the pause. Ive been leaning towards staying on it, at least at this point in time, or adding the Zytiga to slow the mutation although maybe the mutation is very slow, plus some people have no success with Lupron but then get great success with zytiga after the Lupron failure. everything seems unpredictable.

[rococo]

If what your doing is working why get the test. It seems best too me when something stops working than test THAT TISSUE for for some new treatment. Hope this makes sense? Best of luck. Rocco

[GeorgeGlass in reply to rococo]

that's what one of the docs is saying to me. I understand the logic but others say that zytiga, steroid, Lupron may slow the mutations.

[BillNIttles]

I agree, don't stop treatment if it is working. I do believe that doing more than just Lupron is a good idea. If you assume hormone treatment will fail eventually, followed up by chemo or other treatments, why not do both and hit it harder up front, pontentially knocking that shit out completely? I started six months of chemo with Lupron a year ago. I was supposed to get my tumors biopsied, but they disappeared so quickly(as well as my psa), there was nothing left to biopsy. Going to stay on Lupron for the rest of this year, then we'll see. Diagnosed at 44 July 2010.

[GeorgeGlass in reply to BillNIttles]

thanks Bill, what was your cancer status when you combined the Lupron and chemo? What was your psa at the time and had you previously used Lupron by itself for awhile before you introduced the chemo? The NIH studies were done on men with high volume cancer and two quality docs told me to wait because I have very low volume cancer.What was the gleason score of your cancer? what did you do between 2010 and 2016 when you started the chemo Lupron combo?

George

[BillNIttles in reply to GeorgeGlass]

I had a gleason score of 3+4, had a RP in 2010. I looked good, clean margins, but it came back. Had salvage radiation in 2012, it came back. My psa doubling rate was ~9 mo. until it went from 2.7-7.5 in 8 mo. Dr. Kwan at the Mayo Clinic first suggested chemo, based on the CHAARTED study. My cancer volume wasn't high, but we thought it was worth doing chemo. I live in Atlanta, and fortunately have good insurance. I don't have to depend on NIH. Fact is, I was checked at 44 because of my family history, and have never had symptoms from cancer. I'd like to keep it that way. Chemo sucked, Lupron sucks, but it's way better than cancer.

[GeorgeGlass in reply to BillNIttles]

Thanks Bill, I'll talk to the doc about chemo options on my upcoming visit. How often do you get your psa tested?

[BillNIttles in reply to GeorgeGlass]

I got tested every month for 3 months, than every 2 months, going to 3 soon. I'm taking a break from Lupron beginning next year, we'll see what happens.

[AlanMeyer]

Hello George,

I don't know what the best thing is for you to do but, given that your cancer is aggressive and that you are relatively young, I'm thinking that an aggressive treatment might be desirable.

One treatment that has convinced a lot of oncologists recently is a combination of hormone therapy + chemotherapy. In the past, HT was used until it failed, then maybe strong HT was used (Firmagon, Zytiga or Xtandi) until it failed, then chemo. But now there is evidence that HT + chemo works better than HT followed by chemo. And stronger HT (e.g., Zytiga) + chemo may work better and longer than Lupron + chemo. Search for info on the "CHAARTED" and "STAMPEDE" clinical trials for more. To use this treatment approach, you'll want to get the chemo before the HT loses its effect.

One member of this group (search for postings by "Gourd Dancer") has actually been off treatment for years after being treated in a trial of HT + chemo. I don't think anyone should count on a response as good as his, but his results do show possibilities.

If you're being treated by NIH or another advanced research center, talk to them about it. If your treatment is with a doctor who isn't up on the latest research, you might want to also consult with NIH or a research center doctor. Here's the NCI list of research centers they designate as the best:

cancer.gov/research/nci-rol...

Best of luck.

Alan

[GeorgeGlass in reply to AlanMeyer]

thanks Alan. I talked to the NIH about chemo + hormones but MSK and MD Anderson didn't recommend it because my cancer volume was so low and the study at NIH only used men with large cancer volume. Ive also talked to Moffitt and Duke. I can get another test/scan at NIH so I'm considering that. Thanks a lor for your recommendations. I appreciate it. George

[rococo]

Xtandi and avodart added to the lupron. ADT 3 IS THE old aggressive approach but now with more potent meds. Afterall your cancer does show aggression and this would be more effective saving the the zytega and chemo. Best of luck with your decision and keep us informed. Rocco

[GeorgeGlass in reply to rococo]

thanks Rocco, I didn't think of that. Are any of these treatments (Xtandi and avodart, zytiga) extra hard on people with coronary artery disease like I have?

[rococo in reply to GeorgeGlass]

Fighting this disease on two fronts is always difficult. Most of the studies that hormone deprivation drugs like lupron and zytiga have adverse effect on cardiovascular disease but think its because they ofset this effect with diet and exercise. A heart healthy diet has a proven adverse effect on pc as well. Like your doc said your tumer burden isn't that great so going easy with a working sequential approach adding casodex or extandi now or later. Make sure. Exercise is supervised depending on the extent of cvd. you have. Iam not a doc but hope this helps. Best of luck. Rocco

[GeorgeGlass in reply to rococo]

thanks rococo, I will keep extandi and casodex in mind when i visit the doc. The cardiologists are usually disappointingly vague. All I've gotten so far is "exercise moderately" and keep your beats per minute below ~130.

[GeorgeGlass]

Thanks Rocco, I have appointments with two very good doctors later this month. Ill talk to them about this then. I appreciate your advice.

George