Platelet Update

[Univs]

Yesterday I had the "Platelet" discussion with my MO. He indicated that due to my Platelet levels i.e., 51 x 10*9/L, he had no further systemic therapy options for me. A sobering thought. I wanted to check with the forum, based on your experiences and knowledge, on whether you think there might be other options/considerations/next steps I might pursue and/or raise with my MO. (Also, would Pluvicto still be an option?) Thank you very much.

[noahware]

Did the discussion of low platelets include WHY they are low? If they are low because the cancer has invaded your bone marrow, and is compromising its ability to make platelets and/or red or white blood cells, then I would think Pluvicto is not a good idea.

I did mention BAT in a prior reply to one of your posts, and that is what I am going to try. (I too have low platelets, and low blood counts, due to post-Pluvicto invasion of the marrow.) This is of course a risky option, that (like Pluvicto) could make things worse. Testosterone itself tends to IMPROVE red counts in anemic men, but I do not know the effect on platelets.

[Univs in reply to noahware]

Thank you. The MO said the low platelets were most likely a result of marrow infiltration.

[noahware in reply to Univs]

Yes, I expect Pluvicto could make that worse, not better.

[TEBozo in reply to noahware]

How low is "low?"

[Univs in reply to TEBozo]

My platelets are 51.

[Muffin2019 in reply to Univs]

They do platelet transfusions, my mom had 3 or 4 of them but never did find out why so low.

[Univs in reply to Muffin2019]

Thank you....will do another blood draw later this week

[noahware in reply to TEBozo]

My platelets are around 30. My red counts are low enough that I just got a two-unit transfusion yesterday, the second in a month. Things are not looking great.

[Muffin2019 in reply to noahware]

Did they do a platelet transfusion, my mom had low platelets, did not want to find out why since she was 93 and had other health issues.

[Luv2fish in reply to Muffin2019]

Platelet transfusions are very very temporary and may only improve things for a matter of days. My husband had one when his platelets were at 9.

[noahware in reply to Muffin2019]

No platelet transfusion yet... probably not until they drop into teens or lower.

[SpencerBoy11 in reply to noahware]

Have you had a bone marrow biopsy?

[Univs in reply to SpencerBoy11]

No I have not had a bone marrow biopsy. Could that be useful?

[SpencerBoy11 in reply to Univs]

As in my case, it might not be good news, but will answer some questions. My PCP had me see a hemotologist for anemia. This lead to dx of hemochromatosis--too much iron and then a bone marrow biopsy. Results of which said I had myelodysplastic syndromes (MDS) which in essence are bone marrow cancers. It is rare. 10-15K cases a year in the USA. Only cure which has many failures and SEs is a bone marrow transplant and you need to be under 60 to get one. The MDS Foundation says radiation or chemo may cause it. The symptoms are similar to what I have taking Eligard. Currently waiting and watching. Has answered a few of my concerns but now have a whole shit pot full of new ones. Think it is way underdiagnoised.

[Univs in reply to SpencerBoy11]

Ok....thx

[noahware in reply to SpencerBoy11]

No, just MRI that shows invasion of the marrow.

[SpencerBoy11 in reply to noahware]

See my answer above to Univs.

[noahware in reply to SpencerBoy11]

I will mention this to my MO... thanks.

[TEBozo in reply to noahware]

Just said a prayer for you, Brother.

[noahware in reply to TEBozo]

Thank you!

[CJ4J]

Have you had genetic testing done? My husband had 5 Guardant 360 tests done at Mayo and finally qualified for Keytruda with a high tumor burden. His platelets are 43 and Hemoglobin in the 60's. He's had 2 blood transfusions so far, but still keeps getting Keytruda which we are hopeful that it will start working after the 4th Treatment in 2 weeks. Platelets are given when he reaches the 10's.

[Univs in reply to CJ4J]

Thank you. Yes I have had Invitae genetic testing which was negative.

[CJ4J in reply to Univs]

I would repeat it again. What they are learning is that tumors change as they mutate.

[Univs in reply to CJ4J]

Thank you very much. This is an idea that I will follow up with.

[Tall_Allen]

Radiopharmaceuticals (Pluvicto, Xofigo) would further damage platelets in your bone marrow.

[Univs in reply to Tall_Allen]

Thank you for the confirmation. From your knowledge/experience is there any other option, possibility, that might be worth trying or for me has basically the end come to the notion of never giving up.

[Tall_Allen in reply to Univs]

I think most clinical trials have a minimum platelet level of 70 or 100 x 10*9/l, but I don't know them all. You can ask your MO to see what the BiTE trial exclusions are. I can't think of a trial in which very low platelets would not risk death quicker. You can check it every few months to see if there is any recovery.

[Univs in reply to Tall_Allen]

Thanks you. Appreciate the response and insights.

[lewicki in reply to Tall_Allen]

Is this true with Actinium-225?

[Tall_Allen in reply to lewicki]

yes

[tango65]

Invitae genetic testing is a germline testing (your genes).

You could request a direct biopsy or a liquid biopsy to study the genome of the cancer (somatic genome). They could also do histological, and IHC studies and see if the cancer may respond to Olaparib , keytruda or similar drugs.

Consider to get a second opinion in a center of excellence. Sloan Kettering in New York, Dana Farber in Boston, MD Anderson in Houston, UCSF in San Francisco, UCLA in Los Angeles, City of Hope in Los Angeles Area (Duarte) etc.

[Univs in reply to tango65]

Thank you. Some follow-ups for me. Appreciate it.

[Zengal79]

My guy was able to try keytruda after pretty serious bone marrow failure. Didn’t help him, but they let him try even though he was not really a good candidate. They were also going to allow him to try Cabometyx (approved for renal cancers) with keytruda but insurance wouldn’t cover due to off label use. He was going to pay out of pocket but we didn’t get that far. His MO (Russel Szmulewitz) offered it reluctantly because he was still seeking treatment months after his Hospice recommendation stating that in discontinued clinical trials he had personally seen it help a few men but that the overall findings in phase 2 were not good. Said it was less toxic to marrow than other things so he would let him try it if he was willing to pay for it.

My best wishes to you. I hate cancer.

[Univs in reply to Zengal79]

Thank you for responding and caring. You have been through alot and I appreciate it. Take Care.

[Fightinghard]

I hope you are able to find another option that helps you.

[Univs in reply to Fightinghard]

Thx.....will do another blood draw later this week.....also apparently platelet production can be tied to viruses ......nosebleeds have stopped

[pirate21]

I had RP and 40 sessions radiation and for 12 months PSA undetectable and still I have low platelets. 80-90. My MO thinks it is due to my lung condition Sarcoidosis. Just a thought. If you are not 100 percent sure it is due to bone marrow invasion try to further investigate.

[Univs in reply to pirate21]

Thx

[middlejoel in reply to pirate21]

I have and always have had high platelets, Does that relate to a low probability of having bone marrow issues down the road?

[MateoBeach]

You are “up against a wall” for most treatments with platelets that low. I believe only BAT has no known marrow toxicity and can actually stimulate marrow function. But you would have to monitor very carefully with each cycle to see if it is benefiting or not. Your MO could contact the BAT expert Denmeade to discuss.

[Univs in reply to MateoBeach]

Thx.....what if it was/could it have been a temporary drop for whatever reason ?......going back end of week for another blood test......currently feeling revived with more energy and no bleeding nose

[JLS1]

I'm so very sorry you're in this tough position. My husband was in the same spot after Xofigo caused bone marrow failure. His MO said there was nothing more he was able do for him (which I translated to meaning "nothing" within his limits at the hospital) Unfortunately, this was right around the time the pandemic hit and everything was shutting down, making it impossible to participate in the very few distant trials that would accept patients with low blood counts. Proxalutamide was working for some PC patients in this situation, per an oncologist I talked to who was running a clinical trial. Another clinical trial that sounded encouraging is a drug made by Veru Pharmaceuticlas. I posted this a few months ago:

healthunlocked.com/advanced...

I know this is old information but I thought perhaps it can be helpful. You might also research foods and supplements to avoid because they can (or will!) cause platelets to drop - ie., I was shocked to find cranberry juice is at the top of this list!! Also, papaya leaf tea can work to increase platelets. You're in my thoughts and prayers. -JLS

[Univs in reply to JLS1]

Thank you so much for your ideas/concern.....will follow up....Take care

[Rickmartin1948]

hi this is very basic but eating the greens with high load of K1 tend to improve platelets if your body can still produce it

Kale spinach broccoli 🥦 nothing lost in trying

[Univs in reply to Rickmartin1948]

Thank you

[oilcan4]

when my husband's platlets dropped to 54 they had to stop his Radium 223 treatments. You might ask for a pet scan to see if cancer has invaded his bone marrow.