Low Platelet count from new member: CLL is there... - CLL Support

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Low Platelet count from new member

PajamaGame profile image
12 Replies

CLL is there a platelet transfusion to boost platelet count.? It's the only troubling number in my bloodwork having been diagnosed in 2011.

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PajamaGame
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12 Replies
AussieNeil profile image
AussieNeilAdministrator

Yes, platelet transfusions are recommended during treatment with CLL when the platelet count falls below 20 (more usually 20,000 in the USA) if you have an infection and 10 (10,000. US) otherwise. Transfused platelets only last about 4 days, so long term management by transfusion is not very practical.

The trigger for commencing treatment is when platelets fall below 100, (100,000 US) though the latest revision (2018) of the iWCLL diagnosis, management and treatment guidelines allows for platelets to go lower provided they are stable.

Neil

PajamaGame profile image
PajamaGame in reply to AussieNeil

Have been on watch & wait for 11 years, so no treatments yet. Maybe soon? Thanks for your response!

Panz profile image
Panz

I see you are new to our community…WELCOME! I understand your concern and it is a valid concern but only your doctor will be able to guide you.

I personally have platelets on the low side as they bounce around from 70-98. I am on treatment and I do bruise a lot all to be expected but I am in my third line of treatments and doing great and have never needed a transfusion for platelets. Do receive IVIG every 4 weeks and thus they keep a very close watch over me. I am going on 33+ years having CLL and life is pretty special….I take nothing for granted!

You find a doctor you trust if you haven’t already and your journey will be fine. You have found a very special com unity here…it is very caring and we have some very intelligent people!

So please stay connected we are so happy to have you with us….all the very very best!

Panz 🙂☘️🙏💕

PajamaGame profile image
PajamaGame in reply to Panz

Thanks so much for your words of encouragement!

Jm954 profile image
Jm954Administrator

Welcome!

Really more information is needed to be able to offer anything useful. Are you on watch and wait or have you had treatment?

How low are your platelets and do you know why they are low (there are several possible reasons)?

Jackie

PajamaGame profile image
PajamaGame in reply to Jm954

Have been on watch & wait for 11 years...no treatment yet. Platelets now at 86 rest of my numbers are staying relatively the same. This is 1st time platelets have been under 100.

AussieNeil profile image
AussieNeilAdministrator in reply to PajamaGame

My platelets dropped into the low 50s prior to starting treatment, then reached a nadir below 30 in the early part of treatment. If you are seeing a specialist who has lots of CLL patients, they develop a better feel for who needs to promptly start treatment and who might be able to defer treatment for perhaps a few more years.

morepork profile image
morepork

Hi my platelets have yoyoed a lot over the years, between 58-100. (My Lab's Normal Range is 150 - 500).17p deleted, on Ibrutinib 280mg.

So far no intervention needed.

Regards.

Ashwas profile image
Ashwas

I am in wait and watch for last 20 years. My platlets was very stable around 150000.However, three years back I was treated for secondary cancer in rectum with chemo radiation.

After that, my WBC which was stable around 40000 has gone up to 1 lakh and platlets fallen to 1 lakh.

I am still kept on wait and watch and my platlets is being closely monitored every 45 days. I have been told that if the platlets hower around 90000 or so, there is no need to start treatment .

Rand7781 profile image
Rand7781

I don't know if you have a source to get wild Blackberries, but i started eating a cup in the morning, lunch and dinner and my platelets went up very fast.

Vlaminck profile image
Vlaminck in reply to Rand7781

interesting, i have been eating so many blackberries and blueberries for last 6 month that I started to wonder if one could eat too many. I say this because today, hadmy 6 month checkup, and platelets had fallen by 20%. So I do wonder if the berries, which I love anyway, do anything much for platelets.

AlleyBoy profile image
AlleyBoy

My platelets range from 20,000 to 50,000 the kasg 7 years. My spleen is 2x the size if my liver. I also have advanced cirrhosis which has been stable. Hematologist tried ivig therapy which got me to 50,000 for 2 to 3 weeks, but that did not last long. Any suggestions on any natural ways to raise or at least stabilize platelet production or circulation.

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