Whats next on tap.: I am 4.5 yrs into... - Advanced Prostate...

Advanced Prostate Cancer

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Whats next on tap.

Costarica1961 profile image
18 Replies

I am 4.5 yrs into the cancer battle initially a 12.3 psa followed up with a biopsy 7cores, a robotic removal , then salvage radiation, zytiga 18 mos until castrate resistant. Xtandi didn't work, onto chemo docetaxal 4 sessions no good results, onto harpoon clinical trial at ohsu 3 and out liver enzymes off the charts. Back to chemo carboplatin and cabataxal. Starting psa 243 2nd session down to 203 and now down to 132.8. Very happy to see a downward trend although recent bone scans indicated a progression of Mets as well as a mild decrease in other areas. Mets are increased overall too many to count I have a palitive rad appointment today for painful areas, only a couple. My question is considering there are some positive trends occurring with my PSA and maybe a wash with my Mets, I have been registered to participate in a promising clinical trial, possibly in mid January, considering the modest sucess with the PSA Still at a high number do I abandoned the current path to go down a perhaps more effective path. Tough decision considering a downward trend, or perhaps a longer term benefit with the latest greatest clinical trial. Hmmm any input fellow warrior's facing similar decisions.

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Costarica1961
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Tall_Allen profile image
Tall_Allen

Which trial?

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

Bombasin

Tall_Allen profile image
Tall_Allen in reply to Costarica1961

Lu-177-bombesin at Stanford? Hopefully, that will treat the metastases that are not PSMA avid.

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

Tall_Allen I looked up PSMA avid Mets, and I did not understand what that means. Could you explain the difference thank you

Tall_Allen profile image
Tall_Allen in reply to Costarica1961

It means that not all of your prostate cancer has the surface protein called PSMA (i.e., those cells are not PSMA-avid).

Costarica1961 profile image
Costarica1961 in reply to Tall_Allen

I believe PMSA avid is small cell cancer lesions that are resistant to bombesin .

6357axbz profile image
6357axbz in reply to Costarica1961

I’m pretty sure that is incorrect. I had PSMA avid tumors based on the GA68 PSMA PET-CT scan. They are not small cell cancer.

Tall_Allen profile image
Tall_Allen in reply to Costarica1961

PSMA-avid means that the cells express PSMA. On average, 5-10% of prostate cancer cells do not express PSMA, but the number of non-avid cells increases as the cancer progresses. Those cells may still express another protein called Gastric-Releasing Peptide or Bombesin. It's true of small cell cancers but it's also true of other cancers.

BruceSF profile image
BruceSF in reply to Tall_Allen

The Stanford trial can be viewed at med.stanford.edu/nuclearmed... Or at clinicaltrials.gov/ct2/show...

They do a bombesin GA-68 scan first to see if the lutetium might work. Currently recruiting for “Patients for whom no standard therapy is available, tolerated or appropriate”. Excludes prior RA-223

Sujith_k profile image
Sujith_k

Great sign to hear about the PSA trend. After Harpoon which trial ur in?

Costarica1961 profile image
Costarica1961 in reply to Sujith_k

Actually harpoon did not work my Mets and PSA went up considerably. Although the recent chemo has shown some sucess. I am eyeing my next clinical trial, not sure with covid when one will open up.

dmt1121 profile image
dmt1121

I cannot comment on your treatment plan but I can say that it is also important that one is coming from a place of calm and confidence that you ARE well, even with cancer. While I am sure there are those here who may think that meditation is really not worth considering, I believe that regardless of the outcome, is is very important to one's peace of mind, positive outlook and enjoyment of the moment we are in now. It is easy to get caught up solely in what is the next treatment without being able to enjoy our time now.

My experience is that medical treatment, augmented with meditation, good diet, exercise and supplements tends to treat us as whole human beings and not as our disease. I wish you all the best and I hope you find all you are seeking.

Good luck.

Costarica1961 profile image
Costarica1961 in reply to dmt1121

I agree Thank-you.

searchingtom profile image
searchingtom in reply to dmt1121

Meditation, payer, centering, mantrams, and other methods can help assuage emotional pain and help with our continued progression towards our next stage of being.

Kaliber profile image
Kaliber

Yes yes 👍🌼🌻🌈

Chugach profile image
Chugach

That’s a tough road. My path was similar. The palliative Rad is a good idea. I did that for awhile. It was a bit of a game of ‘whack-a-mole’ radiation kills cancer so kill it where you know it lives. It also helps reduce bone pain. The radiation also makes the PC more susceptible to other therapy approaches such as chemo, immunotherapy etc.

Stay strong Costa Rica!!!!

Pura Vida

Costarica1961 profile image
Costarica1961 in reply to Chugach

Thank-you How are you doing now. Have you done any other treatment to address Mets. Besides radiation.

Chugach profile image
Chugach in reply to Costarica1961

I got very lucky and was able to use the immunotherapy Keytruda

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