What's Next?

[Shepard]

Ten years ago surgery, then IMRT, several years of Lupron/Bicalutamide, Provenge, Radium 233, Taxotere and currently Jevtana. I am Stage 4 with bone/lymph node mets. PSA rising after 4 infusions of Jevtana (180). Bone scan/CT update in two weeks. Lost 35#, but still vertical. Need a new "ball bat?" I expect Doctor to stop Jevtana.

[Tall_Allen]

Have you had Zytiga or Xtandi? Have any metastases been biopsied?

[Shepard in reply to Tall_Allen]

I was on Xtandi for about two years. PSA stalled in the mid-twenties, Then jumped to 165and I began Taxotere. Chemo doc says "no" to Zytiga. I suggested "re-challenge" with Xtandi. He did not seem to think that would help. Recent biopsy of lymph node was consistent with initial biopsy ten years ago (no mutation.) Will have a consult after CT and Bone scan update within two weeks. I expect to be passed back to my Urologist and then(?)

[Tall_Allen in reply to Shepard]

I was asking about a biopsy for the phenotype analysis - the pathologist looks at the tissue under a microscope and uses antibody stains it to detect the presence of certain proteins (like the androgen receptor, PSA, PSMA, CHGA, SYP, PRC1, EZH2, DLL3, etc.). There are some clinical trials that target them.

[Shepard in reply to Tall_Allen]

Biopsy was sent to Foundation One. My Doctor said the results did not change his treatment plan. I suspect he only received a Genotype analysis. He did say that there was no mutation from ten years ago.

[Tall_Allen in reply to Shepard]

I was not asking about a Foundation One genotype analysis. I'm asking about an entirely different thing. Ask your oncologist if you can have a histological and IHC analysis for those proteins I mentioned. It is often more informative than a genotype analysis,

[Hidden in reply to Shepard]

Our oncologist said Foundation One testing is the preferred method for finding mutations and that tissue biopsies are no longer the preferred way to learn about tumor characteristics. My husband had a Foundation One test which found 3 mutations. He will have a biopsy too, but only because they suspect a second cancer, not because they expect to learn more about his prostate cancer.

This blog describes much better than I can why liquid biopsies are used over tissue samples: prost8blog.com/2015/10/30/t...

[Sportscar]

I don't have any major insight but I noticed we share many treatments. I just began the Carboplatin treaments. Diarrhea management issues have returned during the 3rd-4th day of the cycle.

[Shepard in reply to Sportscar]

Wasn't a problem for me. I found the main impact was on eating - foods tasted "off." Drink lots of water - made me feel better. Had hair loss - stopped shaving! Jevtana has been lots harder with weakness in legs and nausea. Wishing you a good outcome.

[immunity1]

Alternatively to in situ analysis of your mets by biopsy you could look to having a PSMA Pet scan to see if there are PSMA avid PC lesions that might be amenable to Lu177 - PSMA targeted treatment (which unfortunately you may need to travel for). Immunotherapy another long and expensive shot (off licence, without trial) but some evidence for its utility.

[Shepard in reply to immunity1]

Have had several PSMA Pet scans. Also I took the Xofigo treatment. It did lessen rib cage pain, but did not have any effect on PSA. I understand the median benefit is around nine months. Pain-wise it was helpful for me. Will consult with doctor in two weeks (after bone scan). My concern is the present chemo treatment is weakening me and will limit my ability to make a come back if a "better fit" treatment is found. I sense that the Chemo treatment plan is to follow a standard path through their formulary. I will challenge the doctor on this point.

[Hidden in reply to Shepard]

Hi Shepard,

I've had 4 PSMA PET/CT scans so far, luckily Veterans Affairs here in Australia covers my costs.

Would you ever consider trying an inexpensive supplement (Essiac tincture) that I'm convinced has been helping me for more than three years?

I'd be the first to admit there's no scientific evidence showing it to be effective, but my Oncologist is amazed at how well I'm doing.

It might not help you, but it's inexpensive so it might be worth a try.

Best wishes

Dave

[Shepard in reply to Hidden]

I will check it out. In what way do you think it was helpful? Did it improve the lab results, e.g. PSA, White cells, red cells, platelets or just improve well being?

[Hidden in reply to Shepard]

Hi again Shepard,

If you click on my avatar you can read my bio which details my progress so far.

If you scroll down past my bio there are some posts I started which might be of interest too.

Best wishes

Dave

[Shepard in reply to Hidden]

Wonderful news. I worked as an engineer so like empirical data and measurable outcomes. I need to accept good outcomes what ever route they came to be. I get lots of suggestions from asparagus to Ph altering in the GI tract. I think I am near the limits of "proven medicine." so may venture out in to the misty universe. I accept that 'not all solutions fit neatly in to a box.' I drive a fast hemi Dodge Charger so may apply some of that daring to "what's next." Thanks and wishing you many good years ahead.

[Hidden in reply to Shepard]

I'd never considered the possible connection between your love of driving a fast hemi Dodge Charger and being willing to "apply some of that daring to what's next".

Thank you for bringing it up.

Perhaps it might apply to me too, because of my two motorcycles.

One's a fast Kawasaki ZZR1200 and the other's a Royal Enfield 650 cafe racer.

They're completely different bikes to ride, but I love them both.

I wish you many good years ahead.

[immunity1 in reply to Shepard]

Yeap the chemo sessions can have a bite. I managed 7 of a planned 10 before peripheral neuropathy and oedema caused me to stop. But they probably knocked back my PC for 6mo or so. Also I had left chemo late in my plan (see bio) after RP, RT, ADT, Lu treatment etc. All the best.

[Shepard]

I have been able to deal with the side effects, However, for me the results are the key and the chemo thus far has not fit the lock. Wishing you well.

[beogradjanin in reply to Shepard]

Love your prostate, love your cancer, it is temptation sent to you for reason, to learn from it and rise as a human being. Change positively your self, and the way you live. Believe! Love! Be generous... Find your meaning of life and than with all your being discovered, cure yourself ❤️🤗 Beside going vegan, for bones I use Zometa from time to time, I have toxic vit d3 (take 10.000 daily more than 1 year), magnesium, RS Oil, am currently on LHRH (since 6 years ago) and first month of Xtandi. 2 year ago, Docetaxel 6 doses, single shot radio for hip... for 6 and a half years PSA in range from 5 to 150, currently felt down from 80 to 20 in a month, after first 28 days of Xtandi. Small progression in bone's metastasis, for this almost 7 years. One rib. I never had better life than now! Keep living your life as full human being ❤️

[Shepard]

Well, I got my answer (or no answer) yesterday. PSA is now 170 a slight drop from recent 180 (margin of error.) Bone scan and MRI show additional bone mets. Oncologist says he does not have any effective alternatives to what I have already had and did not want to create more misery for me. He spoke of comfort! Guess he is afraid to say Hospice! I did not press him on that at this time as he seemed to be vulnerable. Will meet in six weeks and I will bring it up at that time. Note: I was a hospice volunteer for over 15 years and also performed primary care giver duties to I am not afraid of the word. Meanwhile, I will be returning to Xtandi even though the Doc does not offer any real hope for benefit. I am off in space at the moment and do not have a plan for "what's next?" (Note my cancer DNA does not fit any of the treatments.) Any ideas?

[Shepard]

Jevtana was halted. Went back to Xtandi, but I could not keep it down. Now, it will be Zytiga with Prednizone. PSA is 606. Bone mets have increased in rib cage and lower back. I am weak and walk short distances with a cane. Recent biopsy showed same DNA profile as nine years ago. I have lost 30#. I can not eat meat protein or any fried food. Had a delicious "plain" yam last evening. Still have nausea and vertigo if vertical more than 30 min. Challenging times! Any ideas to help taking Zytiga? (Note: I had no problems taking Xtandi one year ago.)