Side Effects of Ibrutinib/Venetoclax - CLL Support

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Side Effects of Ibrutinib/Venetoclax

jonrha profile image
10 Replies

Started Ibrutinib 9 months ago and Ventetoclax 6months ago on the Ibrutinib/Venetoclax Trial. I guess I am lucky as diarrhea only kicked in 4 months ago while on holiday in Thailand. I have had monthly checkups with my Hematology Dr and at the check up, after the Thailand holiday, Dr said could be change of diet as I eat Thai food their not Western. OK came home for a month little diarrhea and had another holiday 2 months ago in Malaysia for a month had diarrhea on and off . I came home had a cold the next day but no diarrhea and at the check up 3 days after arriving the Dr said wait and see probably a cold. The cold went away after a week at home and in that week no diarrhea. But for the last 10 days I have this tightness in the chest, sniffles, weakness and lots of diarrhea :(

Did the travel complicate things ?

I have tried bland diet banana, toast and rice with no luck .. suggestions ?

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jonrha
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10 Replies
Justasheet1 profile image
Justasheet1

I would let the doc check a stool sample and do a chest X-ray if it were me. You’re on some powerful meds.

Jeff

Cllcanada profile image
CllcanadaTop Poster CURE Hero

I would think you may have picked up some exotic bug on your travels... you may have C.difficile... get to your doctor. See about your chest..you may have a fungal infection...they often don't trigger a temperature rise...

10 days is too long.. you need to act fast on these treatments...

Yes its serious... I know because I just went through both at the same time.. if you don't get answers soon.,.then head to emergency care.

~chris

JigFettler profile image
JigFettlerVolunteer

Additionally a vegan-like diet may help. Diarrh is caused by different mechanisms. One of which is loss of intestinal villi after an infection of the gut from travel. The villi... intestinal lining... needs to recover. It will. So simple foods help. Agree with advices above btw! Good luck.

jonrha profile image
jonrha in reply to JigFettler

Good point :) i think loss of Villi is what has happened to me.. so I am reducing my bland food( toast, rice,pasta and banana) and having plenty of water..

jonrha profile image
jonrha in reply to jonrha

You know what I mean't .. I mean remaining on the bland diet :)

jonrha profile image
jonrha

Thanks guys for the feedback funny enough I feel better today chest feels less tight and a normal poo . but should have a chest x ray

Hoffy profile image
Hoffy

I traveled the US and the Cayman islands on I plus V and did OK. Thailand might be more exotic.

I am Vegan so that might help.

How are your finger tips??

Be well,

Hoffy

jonrha profile image
jonrha in reply to Hoffy

finger tips ok

jonrha profile image
jonrha in reply to jonrha

Maybe you have numbness side effects .. I had slight numbness of tongue tip after starting Ventetoclax

jonrha profile image
jonrha

OK i went to my Hospital Emergency yesterday (which is linked to the Trial Team) and blood test showed my Electrolytes are normal. The Emergency Dr said continue the bland diet and plenty of liquids. I wait a few days for the stool sample results . The Doctor said I am just getting over the cold..If I had fungal lung infection my symptoms would be more severe.. I have just a feeling of slight congestion in my lungs . I had just 1 diarrhea poo at hospital and today I had I solid poo.So I hope my system is clearing the bug or just a hiccup up in the drug side effects . The Hematology Dr visited me before I left and said I have a history of loose poos and probably picked up something in Thailand and they were not concerned.

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