Dr.Increased ibrutinib to 560 a week ago. have... - CLL Support

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Dr.Increased ibrutinib to 560 a week ago. have started losing weight without trying(5 Pounds) Any thoughts?

aberk profile image
9 Replies

Weight loss

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aberk
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9 Replies
Justasheet1 profile image
Justasheet1

Check that dose. That’s only for MCL I think.

cajunjeff profile image
cajunjeff

I think you should report any unusual weight loss or weight gain to your doctor. Both weight loss and gain are listed as potential side effects of ibrutinib, but most of the complaints you read from people on here are from weight gain.

There are many possible other reasons for weight loss. Particularly with people who are overweight to begin with, a five pound loss could just be water loss and not too significant.

Since you seem concerned about it I would assume this amount of weight loss for you is unusual. So I would definitely report it to your doctor unless it is in the range of a normal fluctuation for you.

aberk profile image
aberk in reply to cajunjeff

thanks

81ue profile image
81ue

I was on 560mg and had WBC in the 400Ks when I started. What I didn't know was that dose of imbruvica caused excess stomach acid and I got a damaged esophagus and ulcers which may have been the point of entry for the sepsis infection 17 months later when I was told imbruvica failed. Discuss acid issues if you have them with this medicine before it causes problems.

Unintended weight loss is an issue doctors want to know about. When you talk to your doctor you might consider could it be that you are taking imbruvica on an empty stomach and the instruction not to eat for 2 hours after is helping you cut out snacks? Other changes like not having coffee with sugar at the office due to quarantine? Just little changes like adding going for a walk, portion control with food, less water retention, more physical activity around the house . . .

aberk profile image
aberk in reply to 81ue

thanks

PlanetaryKim profile image
PlanetaryKim

Do you have MCL, aberk? Because 560 mg is not the dose for CLL.

aberk profile image
aberk in reply to PlanetaryKim

no I do not

PlanetaryKim profile image
PlanetaryKim in reply to aberk

It's not customary for doctors anywhere to prescribe more than 420 mg of ibrutinib for CLL/SLL.

Shaheenji profile image
Shaheenji

Cll Dr are the best judge's but 560mg is is a little more for Cll without other manifestation's of Cll. Please talk to or change your Cll specialist for making a change in monotherapy or otherwise .Stay blessed

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