New Bone Mets with low PSA: Diagnosed... - Advanced Prostate...

Advanced Prostate Cancer
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New Bone Mets with low PSA

Stevemarr
Stevemarr

Diagnosed September 2017, PSA 147,mets to both femurs, ribs, shoulder, jaw. No soft tissue. Treatments Luprilide, Bicalutamide. Past 3 months PSA under 0.1. Spot radiation, follow up scan show significant progress after targeting legs and shoulder, and less rib hot spots. I fell, was checked out at ER, doc said new met in my upper spine.

Have follow up with MO 7/18. A complication is I also have a mild case of Myelodysplastic syndrome- MDS (en.wikipedia.org/wiki/Myelo...) which am told complicates chemo options. Have not had treatment for MDS, issue has been low blood platelet counts at times, last test was 125k, slightly below normal but OK.

Anyone had experience with these 2 conditions?

Any guidance for meeting with MO?

Any thoughts on research I should do?

Did talk about adding Zitiga, not sure if this would help if PSA low, any feedback?

Slight delay in seeing doc, Lord willing going salmon fishing next week with son and grandson. Want to be diligent while wanting to not worry to much until I get back.

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I was diagnosed stage 4 in july 2017 with extensive spine mets, lymph node, and bone marrow involvement. I also have ITP which is chronic low platelets - usually around 100k for my whole adulthood but around age 50 was once hospitalized with a platelet count of 10k (discovered by testing after sudden bruising). At that point it was life threating but i responded to steroids and after a week was released from the hospital. Otherwise i have never been treated for low platelets - its just chronicly low.

Back to my cancer, I was 55 at diagnosis and besides lower platelets (and suprise cancer) extemely fit and healthy. My MO had me on chemo less than a week after my diagnosis because of my extensive mets and the studies that show chemo is very effective as first treatment (along with lupron of course) for a high tumor load.

Fast forward to now, I did 10 rounds of chemo ending in March 2018. I had amazing response with end result of 0.1 PSA and no longer and visible mets left.

During chemo, I had zero platelets issues, in fact my numbers hovered around 150k instead of 100k during my treatment (tested weekly) although it did move a bit in the cycle. The doc said it was because the daily prednisone was enough to keep the platelets up.

I did end up with pneumonia in round 8. And i eventually stopped at round 10 due to my red blood cell counts starting to not rebound along with being constantly nuetropenic. But again, platelets were fine.

Overall chemo was a "breeze" at my age and initial fitness - or at least as much of a breeze as possible with fatigue and nuetropenia, etc.

I did not work during my chemo period but am back to work full time, walk 4 miles a day, and continue to physically improve.

Now its just a waiting game for how long the chemo will keep it down.

I don't have experience with MDS, but my question would be - isn't the same kind of chemo (docetaxel) good for both MDS and prostate cancer. And if not, what kind of a chemo cocktail would be ideal. With your large number of mets, I would look to early chemo before I looked to early Zytiga.

I have sideroblastic anemia, a type of MDS. I was diagnosed with it a few years before I was diagnosed with PCa. My blood chemistry was stabilized with vitamin B6 - I take 100 mg a day. I have seen no changes in my blood chemistry over the years, taking ADT and now adding in Xtandi to try to extend my time with PSA < 0.1. I have mets in lymph nodes that are undectable with the scans I get. So far (almost 7 years now) no new problems, no new mets.

Good luck and fight the bastard with all you got.

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