Urgent question: low platelets

[Glees]

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.

[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 in reply to rcknow]

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

[Justasheet1]

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

Jeff

[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 Partner CLL 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 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 Volunteer]

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]

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]

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 in reply to jorum]

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

[jorum]

bgb-3111 aka zanubrutinib