CLL question: Hello, I were diagnosed with CLL... - CLL Support

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CLL question

farber profile image
12 Replies

Hello, I were diagnosed with CLL 5 years ago, 2 years ago had chemoterapy and now I’m taking Imbruvica already 1 month. My lyphnotes almost gone. Is anybody’ know can we drink alchohol during with Imbruvica treatment ?

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farber profile image
farber
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12 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

This should be discussed with your doctor...he knows your situation and possible comorbidities...

Alcohol is not contra indicated on ibrutinib...

~chris

farber profile image
farber in reply toCllcanada

Thank you Natalie

Ellieoak profile image
Ellieoak

Talk to your Doctor. I have about 1 drink a month. My Doctor thinks that is fine, I’m sure it is because I don’t abuse it. I’ve been on Imbruvica for 5yrs now.

gp7591 profile image
gp7591 in reply toEllieoak

Ellieoak, Thanks very much for your note. You mentioned you've been on Ibrutinib (Imbruvica) for five years. How is it working for you? Any major side effects? Also- whatever you feel comfortable sharing- are you mutated or unmutated? Any notable "markers" or deletions? I'm curious because I'm new to all this- diagnosed in May 2017 and recently went on Ibrutinib. Whatever you can share will be much appreciated! -G

Ellieoak profile image
Ellieoak in reply togp7591

I’m 11q & 13q deleted. I now have curly hair , before it was straight. I also have different joint problems which I take Plaquenil for. Recently I started taking drops of Everday Plus and it seems to relieve a lot of the joint pain so I have been able to exercise more. It is a hemp oil. My nails were getting real dry but I started creaming them everday so they have been fine. Let me know if there is something I missed I will be happy to help. Anna.

lankisterguy profile image
lankisterguyVolunteer

Here is a posting from 2 years ago on this exact subject. Many of the replies, especially the ones from Newdawn and PaulaS are excellent.

healthunlocked.com/cllsuppo...

BTW- if your post title had included the word alcohol, then the "Related Posts" at the top right of this page would have included those discussion threads.

Len

lankisterguy profile image
lankisterguyVolunteer

AussieNeil posted a broader question about alcohol and cancer in general. You may find that useful.

healthunlocked.com/cllsuppo...

Len

farber profile image
farber in reply tolankisterguy

Hello, I’m taking about alcoholic like drink sometimes wine occasionally. Thank you Natalie

RJR1 profile image
RJR1

Hello, 18 months on Imbruvica. Nodes returned to normal size almost immediately. Blood has been like that ofva healthy person for almost a year.

I told my Dr. " no way was I giving up a beer or a cocktail " because of CLL or Imbruvica.

I'll have a beer with lunch maybe once or twice a week. When we are in MX, maybe several during the day ( avoid the water there ). I also allow my self an ounce or so of bourbon during cocktail hour most days. I do drink them light with water and problem drink near a quart of water during cocktail hour.

Rarely drink my bourbon neat...or heavy cocktails like my favorite Manhattan.

Moderation is the key

farber profile image
farber

Is anyone noticed to increase appetite and gain weigh during treatment on Imbruvica ?

pkpayne profile image
pkpayne in reply tofarber

When I started taking IB in late September I noticed that I gained about 10 pounds and I wasn't eating any more than I did before. I haven't noticed an increase in appetite however - just the weight gain.

farber profile image
farber

thank you for your response

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