Calquence Headaches and Low Blood Cou... - Non Hodgkin's Lym...

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Calquence Headaches and Low Blood Counts?

stonefilly profile image
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Hello!! I am writing on behalf of my dad. He was diagnosed with Mantle Cell Lymphoma in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan. He was about to prep for stem cell transplant... however, they found some more abnormal cells after a bone marrow biopsy so they put him on Calquence/Acalabrutinib for 3 months with 1 dose of Rituximab. He hasn't had any chemo since late February... and that last chemo really did a number on his blood counts.

ok, after that intro, my question is this: he is mainly worried about 2 things right now - his consistently low blood counts (despite Zarxio shots 2-3 times a week) and the debilitating headaches from Calquence. He is unable to sleep because of the headaches, and is pretty much under house arrest (not even able to work in his woodshop) from the low blood counts. Can you give me any words of advice or comfort to put him at ease and convince him that this is NOT going to last forever? Caffeine certainly helps with the headaches, but obviously doesn't help with his being unable to sleep. He is going to try Excedrin Tension Relief or Migraine Relief but is a bit concerned about the aspirin in it.

It's more just the anxiety of thinking this is never going to end... has anyone here gone through this and can offer advice?

Thanks so much in advance,

Shelby

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Judyhoneycomb profile image
Judyhoneycomb

So sorry to hear about your Dads low blood count. I am 80 and have Mantle cel which is unusual for a women. I'm to old for a transplant. Mine was stage IV, spleen, bone marrow and all lymnodes from neck to groin. I did R Chop chemo. I just had tonsil cancer and they did radiation and it burned me terrible inside my throat. I had to go off the radiation. I am now on Imbruvica 560 a pill for mantle cel. This is my second month. So far no bad side effects, no headaches, blood work has been really good. Prayers that your Dad can recover and get back to feeling better soon. I am fatigued all the time and do have neuropathy in feet to ankles from my first chemo. So my balance is off and I have to use cane or walker. But I have no pain now that tonsil is down. Wishing you and Dad the best...

Judy Manning

stonefilly profile image
stonefilly in reply toJudyhoneycomb

Hi Judy! Thank you for your input... glad to hear Imbruvica is working for you, that was another option that his doctor suggested. Hope all continues to go well for you!

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