I was diagnosed and had a radical removal in Nov 2010 with Gleason 7 and one lymph node involved. In the past 2 years I have been through abiraterone then the ProSTAR trial only enzalutamide which failed quickly and was moved to the arm receiving both enza & CPI-1205...failed quick and removed from trial.
After 9 rounds of Docetaxel (the last 9/2/20 and it really seemed to work) we started Ra223 on 11/20/20 with round 2 on 12/18/20. My blood counts tanked with platelets at 10 on 2/8/21.
After bone marrow biopsy and 2 units of blood on 2/1/21 told the bone marrow failure was due to aPC cells killing the bone marrow cells which is no longer producing my blood cells as need.
I am told there is nothing we can do until blood counts start coming but they are not expected to do so.
I have started a vitamin & nutritional supplement regiment for all I could find that helps bone marrow or platelets.:
D3
Papaya Leaf Extract
Folate
K
Zinc
B12
Magnesium
Iron
C
Probiotics
Calcium Citrate w/D3
Papaya Leaf Tea
In the past 8 years I have eaten primarily a Mediterranean diet with no red meat and very little poetry. Weight is good and general health is very good except for the monster.
Anyone with thoughts on my case please speak up! If I go down it will be with a fight!
Written by
Trengle
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Don't you love the taste of Papaya Leaf Extract! I got through the 6 sessions of Radium 223 but after 3 recent chemo sessions my Platelets, RBC, and WBC have all been very low. I had my blood work done every week for the last month and they remained low so now I am not going back for a month. Hoping the time, rest, and Papaya Leaf Extract will do the trick. PSA floats around 260.
The extract is in capsules so they are great. The tea is very earthy but not bad…I did add some honey so it actually tastes good….the tea is Buddha Teas off Amazon. Interesting you made it through all six rounds what are your platelets running?
Glad to hear you are still feeling relatively well, Trengle, as you take a break from the Xofigo (R-223) for a while due to dropping blood levels and possible metastatic invasion of marrow tissues.
Anecdotally, I knew a man from a cancer support group I attended a few years ago. He started Xofigo already as an advanced case, and quickly developed an almost complete dependence on frequent blood transfusions. He probably got many more transfusions than a typical patient would, due to the happenstance that he was a well known doctor in the local medical system, and certain "doors" seemed to open easier for him than for others who had less familiarity with the system or fewer general means. His primary caregiver wife was also a "force of nature". Anyway, after only 3 delayed/completed treatments he became very weak and suffered a fall in a parking lot while going to get some blood lab tests done. With also compromised platelets, he also developed a brain bleed, and things cascaded from there over about a 1-2 month period. His prostate cancer apparently pretty much took over in his bones and bone marrow. He finally died in hospital within a couple of days after 1-2 emergency runs from home.
The take-away I took from it was to consider Xofigo earlier rather than later, when bone mets are fewer and performance levels are higher. Another take-away was to keep watching the blood level markers in the Full Prescribing Information like a hawk, and know the recommendations for adjusting/delaying doses. And finally, be very careful with unexpected weakness/mobility issues related to low blood counts levels. Don't try to "tough it out" and do everything so independently or alone. The last thing you want is to fall by yourself in a parking lot, or to have to be carried out of the house by EMTs or firemen as a last resort from a call by your frantic caregiver, or when alone.
I'd also remember that such outcomes are generally NOT typical, but they can happen. It's often the luck of the cancer genetics that has gotten into one's bones.
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