New to the group: I am new to the group... - Advanced Prostate...

Advanced Prostate Cancer
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New to the group

ggbk
ggbk
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I am new to the group. I appreciate what I have seen so far as far as the sharing of experiences and as a source of good information. There does not seem to be any definitive answers to situations because of the number of choices and the differences in each patients circumstances. I welcome any feed back on my situation.

I had a PSA of 10.5 in December of 2013. That lead to a biopsy and a gleason of 9 (5 plus 4). In March 2014 I had radical prostatectomy. The post operative PSA of .5 lead to IMRT radiation treatment between August and October of 2014. Post radiation PSA never got lower than .2. I have been following the progression of the PCa ever since. The PSA has been rising at about .1 a month and the last reading in November 2017 was 2.3. I have to decide when to start ADT and have been putting it off because of the belief that it will eventually fail and since I have no symptoms and I have concerns about side effects. I wonder when I should start it and what I should start with. I participated in a clinical trial of a radiotracer Gallium 68 pet scan at UCLA medical center and the results showed no radiographic or metabolic evidence of metastatic disease. I did show a number of pulmonary nodules and some showed a faint to mild PSMA uptake. The doctors at the trial and my oncologist think I should biopsy the larger pulmonary nodules and when that is done I will decide when to start ADT and what to start with. Thanks for the forum to share experiences and suggestion.

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gusgold

When PSA reaches 2 Lupron/Zytiga

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Dr_WHO

Welcome to the group! I hope that you find not only information but fellowship here. From my perspective as a fellow warrior (not a MD) I would aim for ADT sooner than later. Cancer is always mutating. The longer you wait the harder it is to treat. Of course not everyone agrees with that. If you go with hormonal therapy please ask your medical team about putting you on both Lupron and Zytiga. A series of trials that were published last summer showed “ground breaking “ ( their words) results by using the drugs together. Listed below are some references.

ascopost.com/News/55699

onclive.com/web-exclusives/...

The above are just suggestions from a fellow fighting his own battles with cancer. Hopefully others here will offer their advice to you. They are just that, advice. You must determine you own path. However, please know that you have a large family here pulling for you. As the song says “people like us we have to stick together “.

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ggbk
ggbk
in reply to Dr_WHO

Many thanks for the response. Thanks for the references as well. The more information we can gather the better decisions we can make.

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Hidden
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vandy69

Good Morning ggbk,

Sounds like you have a good team and with aggressive PCa, quality of care matters. Please see my bio for treatment history.

As your PSA rises, ask your Med Onc about a Guardant360 liquid biopsy. It takes 2 vials of blood and tests your cancer for genetic defects. Your cancer will mutate over time and some genetic defects are actionable.

Gleason 9 is an aggressive cancer. Do not hesitate to fight it aggressively. Time matters.

Best wishes. Never Give In.

Mark, Atlanta

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ggbk
ggbk
in reply to vandy69

Thanks for the reply, Mark. I grew up in Atlanta. Went to Marist HS and Emory. I will look into the Guardant360 liquid biopsy for sure.

Warm regards

George

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vandy69
vandy69
in reply to ggbk

Hi George,

If there is a tissue sample available, FoundationOne also does a genetic test.

Also grew up in Atlanta, went to Decatur High and Vanderbilt.

Mark

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jwmsclt

Welcome to the group, George. You might look into the subsidized molecular analysis offered by Zero: zerocancer.org/get-support/...

Lots of other resources on their website as well. Good luck to you. Our cases are similar - I am just several years ahead of you. You didn't mention your age, which is important in weighing quality of life vs. extending life. There are definite tradeoffs, but at some point you might be faced with the difficult choice of extending your life vs. feeling like a whole man. There is no perfect solution. But I can tell you that I have been aggressive in my treatments and I am still kicking 12 years after my initial diagnosis. Radical prostatectomy, two rounds of radiation therapy, two rounds of ADT, Xtandi and Zytiga. It has all been worth it, despite the side effects.

Best of luck to you with your treatments and your decisions.

John

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ggbk
ggbk
in reply to jwmsclt

Hi John,

Thanks for the reply and good wishes. I am 74 and playing the best golf of my life. I feel good and I am reluctant to start ADT any sooner than the oncologist think is necessary. One of them suggested it was OK to wait until my PSA has risen to 10 and I was happy with that. I have since seen an oncologist that specializes in PCa and he doesn't think I should wait that long. I like getting opinions from more than one source but it does add to the difficulty of deciding which course of action is best.

George

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jwmsclt
jwmsclt
in reply to ggbk

George, at your age, I think you have the luxury of going with intermittent ADT or wait as long as you can. If your PSA doubling time is not rapid, keep monitoring and golfing for as long as you feel comfortable.

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ggbk
ggbk
in reply to jwmsclt

I agree John. Quality of life is important to me and I think I want to put off the negative side effects of ADT for a bit longer. If I was much younger I would probably be more concerned with extending life. I wonder what folks think of just taking Casodex and not Lupron when I do start ADT. It seems to have fewer side effect. Or maybe starting with Casodex and seeing how it goes.

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ctarleton
ctarleton
in reply to ggbk

Some general food for thought:

pcri.org/anti-androgen-mono...

Charles

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ggbk
ggbk
in reply to ctarleton

Bingo! Thanks Charles this was right on the money and very helpful.

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j-o-h-n

by George, you've found a great group...

Good Luck and Good Health

j-o-h-n Tuesday 01/09/2018 10:17 PM EST

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