living with lukimia: hi, Iv been living with cll... - CLL Support

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living with lukimia

bali103 profile image
5 Replies

hi, Iv been living with cll for one year have had my spleen removed chemo did not work and have been taking ibrutinib for three months and experiencing depression blurred vision some times my heart beats through my chest my head feels like it cut off from the world.but my blood test are showing great improvement with none of the effects of the leukemia

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bali103 profile image
bali103
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LovecuresCLL profile image
LovecuresCLL

Hang in there my friend. You have been taking a medicine that will help you in the long run. Do you have a great CLL specialist doctor to tell about the side effects? Don’t be sad. You have friends here to help you get through this. We are here for you. Best wishes,

-John

bali103 profile image
bali103 in reply to LovecuresCLL

hi john thaks for the reply only just found this support group and finding out more things about this drug like my nails are breaking realy bad now have read how to fix

LovecuresCLL profile image
LovecuresCLL in reply to bali103

Ouch nails breaking sounds awful. Isn’t Biotin for good nails. I know this sounds quirky but can you protect and strengthen your nails with a polish so they don’t break easily . A clear one if you are a male . Keep them cut short then clear polish. Also send clippings to lab to make sure fungus hasn’t infected them.

Sorry I couldn’t help more.

Jm954 profile image
Jm954Administrator

Please tell your doctor how you are feeling and about this symptoms which may be side effects.

Most of the ibrutinib side effects reduce over time so as LovecuresCLL says - hang in there and let your doctor help you, this is a great treatment.

Jackie

Time17 profile image
Time17

Maybe see if you can change to Venetoclax or add Venetoclax to the combination with Ibrutinib so that your dose of Ibrutinib can be reduced. I certainly agree with the previous advice given-- talk to your specialist as soon as possible. Best wishes.

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