Urgent question: low platelets : My husband... - CLL Support

CLL Support

22,367 members38,474 posts

Urgent question: low platelets

Glees profile image
11 Replies

My husband Murray is in a very precarious state right now and I would sure appreciate your input. Just to summarize - he is 58, diagnosed 3 1/2 years ago but with symptoms for many years before that, 13q, 11q & trisomy 12, relapsed quickly after FCR, on ibrutinib for 9 months, scheduled for stem cell transplant in January. He has had to reduce his ibrutinib due to neuropathy & now went off it because his platelets are down to 6 (normal being 150 to 400). He is having platelets every few days and really doesn’t feel that bad but this is scary! His medical team seems really puzzled. Any ideas? Anyone else have experience with this? I asked about Richter’s but they say no because his spleen seems good and he doesn’t have some of the other symptoms.

Written by
Glees profile image
Glees
To view profiles and participate in discussions please or .
Read more about...
11 Replies
rcknow profile image
rcknow

Have you asked your doctor if it's an autoimmune thrombocytopenia? I have attached a link to an article on autoimmune cytopenias and ibutrinib. I hope this helps.

ncbi.nlm.nih.gov/pmc/articl...

Glees profile image
Glees in reply to rcknow

This is really helpful. I just forwarded it to our nurse. Thanks so much!

Justasheet1 profile image
Justasheet1

You might need a new medical team in my uneducated opinion.

Jeff

Glees profile image
Glees in reply to Justasheet1

We had an amazing hematologist, but she went into research/admin & gave up her stem cell transplant patients. We do not know this dr well but he is talking to our former doctor. Our stem cell nurse is in touch with us constantly and has been very helpful. We are also thankful that we are in God’s hands and He knows more than our medical team does😊

pkguk2 profile image
pkguk2PartnerCLL Support Association

Hi Glees

I am sorry to hear about your husband, and I know that you must be very concerned. From what you have said, thrombocytopenia, as rcknow has stated, is a possibility, and it is good that you have referred it to your nurse. May I suggest that you follow this up urgently to make sure it gets to your doctor as soon as possible. I hope your doctor is a specialist in CLL and if not it would be a good idea to try to find one if possible as CLL is a disease which does require very specialist knowledge and understanding. Stopping Ibrutinib is usually done with great caution and I am sure your doctors will have taken this into account.

I hope that your husband improves and do please let us know how you are both getting on.

Glees profile image
Glees in reply to pkguk2

We just heard from our nurse that we will be able to meet with our former hematologist today after Murray’s transfusion which is good news. She definitely knows CLL & Murray.

PaulaS profile image
PaulaSVolunteer

Just wanted to say I feel for you in the present puzzling (and scary) uncertainties with Murray's condition. So glad that his former haematologist is going to see him again soon. Do let us know how things go.

With hope and prayers,

Paula

Glees profile image
Glees

Murray went into the Hospital feeling very weak today and had quite a major allergic reaction to the platelets. Thankfully Benadryl took care of that and his platelets went up to 40 - the highest they have been in two weeks! We saw one hematologist and our former one is calling us this weekend, and we are back on Monday morning to have everything checked again.

jorum profile image
jorum

I suffered low platelets associated with my CLL for many years. Platelet infusions did not help but IViG certainly did. I also took Eltrombopag for 2 years which successfully boosted platelet count. More recently I have found that my ibrutinib like medication increased my platelet count to the point that I now hover around 140. I hope a good solution comes your way soon.

Glees profile image
Glees in reply to jorum

Very good to hear. You say ibrutinib like medication. What was it?

jorum profile image
jorum

bgb-3111 aka zanubrutinib

You may also like...

Ibrutinib and low platelet

father have been taking ibrutinib for a month. His WBC has decreased but his platelet count has...

Gazyva and Low Platelet Count?

“looking good”. My oncologist said the drop in platelet count was unexpected. He immediately put...

Low Platelet Count - 114,000

he will typically address a patient with a low platelet count once that counts goes below 100. I...

low platelets and venetoclax

have been on venetoclax for 3 months and only my platelet count is dropping. Has anyone had the...

platelets low

low platelets mean that i will need treatment... when i asked the consultant what low platelets...