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Platelets

A MyMyelomaTeam Member asked a question 💭
Key Biscayne, FL

Good day Team
I am now on Darzalex, Pomalyst and Dexamethasone.
My platelets are tanking…….🤔
Does anyone have any ideas what I can do to hopefully get ( and keep) them above 50??
I appreciate your answers
Rudi

October 13, 2023
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A MyMyelomaTeam Member

Hi Ruediger, how many milligrams of Pomalyst are you taking? I'm on 2 mg with Darzalex monthly. My platelets are good. My Pomalyst is 21 days on and a week off. I do eat baby organic spinach omelets frequently. I also take a multi vitamin, b Complex, Tumeric, alpha Lipoic acid, D3, extra b 12, and lipo flavonoid for ringing in my ear. I do try to exercise at least 5 days a week. Hope this helps💕🙏

October 16, 2023 (edited)
A MyMyelomaTeam Member

This has been a very informative discussion. Thanks for every ones contributions. If I knew then what I know now.

October 16, 2023
A MyMyelomaTeam Member

I am so sorry to hear about your platelet levels. Visit with your doctor for what best to do. I am a platelet recruiter for Oklahoma Blood Institute. There have been times our platelet donors have asked what they can do when their platelets drop (doesn't happen too often and not because of their donations). Perhaps as Donna shared Tumeric and Curcumin might help. However, when visiting our platelet nursing staff they said there is nothing known that can help. Hate to bear bad news; and that is why visit with your doctor. Prayers and blessings your way

October 16, 2023
A MyMyelomaTeam Member

Don't do anything you don't feel it right for you. Of course follow your doctor's instructions. I don't go overboard with Tumeric. I was taking Doctor's best Tumeric. I'm currently taking naturewise organics Tumeric and Curcumin. I capsule daily from Amazon. Darzalex goes to monthly after 16 doses. I have always had a week off from Pomalyst. I hope your platelets come up just fine on their own💕🥰

October 16, 2023
A MyMyelomaTeam Member

You Probably need to have them reduce the amount of or frequency of treatment.

Before treatment, they should check your CBCs and with low platelets defer treatment until they've regained. It just like having a break period on Revlimid.

2 years ago, before every DarzFasPro shot, they checked my CBCs for a Go - No Go treatment decision.

Rather them they Just doing the Shot or IV, look at your Full Labs and see how you're responding. If you've responded extremely well with Labs at or near Normal and a greatly reduced MSpike (if you exhibit one), then taking a recover break is right and important.

I know now that two years ago, I was greatly over medicated for the sake of This is The Plan. They said to me - "we're going to give you as much as you can tolerate". In doing so, they gave me severe permanent neuropathy and its hell that I have to manage with oxy, tylenol, magnesium glycinate (I've tried Everything else -this is the best for me). Even though my Labs were extremely good at the time - I didn't know then, their drive to keep-going was causing so much damage.

We need treatment specific to the individual, not the Plan.

October 13, 2023

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