[brewy36Participant]

Hi,
Does anyone have any advice on how to improve platelets level? I’ve had to postpone lenalidomide maintenance for several weeks now as I was told it was affecting my platelets but they still aren’t rising. Hovering around the 50 mark at present. Everything else is stable and good I’m told. I’ve read about papaya leaf extract but has this worked for anyone?
Thanks, Brewy.

[rabbitParticipant]

Hi Brewy,

I am also in remission and have platelet levels at around 50. I can’t answer your question, but I think that my situation is relevant.

Having gone back through my NHS medical records, my platelets may have always been low (they were below the normal range way back in 2007 at least). When I was going through the first line of treatment (roughly speaking, the first half of 2023), they went down to as low as 23, which did mean that I couldn’t get all the chemo that I would otherwise have had.

However, I have been in remission for a year now, and despite my low platelets that has meant lenalidomide daily for the first 3 weeks of each 4 week cycle, plus an injection Dara at the start of each cycle.

I am aware that consultants can disagree, and that there could be some other factor for all I know, but I am an example that it is possible to have lenalidomide whilst having low platelets. Happy for you to share my story with your consultant, or for me to talk directly with your consultant. Much as I respect them, they are not gods.

By the way, if anyone is wondering why an infusion of blood platelets wouldn’t deal with the issue: it can only work in the very short term (a few hours), before the platelets get broken down again in the body. I have had this done but only as a quick and very temporary fix before a bone biopsy or cataract surgery, not as any kind of solution.

Regards
Rabbit

[brewy36Participant]

Hi Rabbit,
Thanks for your reply. Mine had always been a decent level, over 100 up to starting lenalidomide last September and they have just steadily decreased since then, occasionally going up when I stayed off the lenalidomide. This is the first time they have gone down despite not taking it for a month. I shall discuss it with my consultant. Thanks for your advice. Long may your remission continue.

[macklebaeParticipant]

Interesting thread as I’m facing exactly the same situation as you Brewy…they took me off Lenolidamide 2 cycles ago because of low platelets. They said they never fully recovered after the SCT, but having read Rabbit’s post, I wonder if they have always been low. I’ll now ask. Grateful Brewy if you could post any update you get after speaking to your Consultant.

Question for Rabbit…is the Dara injection intended to specifically counter the low platelets?

Kind Regards,

Macklebae

[rabbitParticipant]

Hi Macklebae,

Thanks for your question.

It would be wonderful if a chemo drug could boost platelets!

No, nothing like that. I have Dara as part of my maintenance to make it more effective. One extra reason for that is that I am a high risk case, due to chromosomal abnormalities.

I like to be well informed on MM and treatments for it, so here is a research paper justifying Dara being part of a maintenance regime (not solely for high risk cases):
https://ashpublications.org/ashclinicalnews/news/7756/Daratumumab-Effective-as-Adjunctive-Maintenance

Regards
Rabbit

[macklebaeParticipant]

Hi Rabbit, thanks for the clarification & link to the article. Will ask my Consultant about Dara.

Regards, Macklebae

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