Starting a new chapter in life : Starting... - CLL Support

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Starting a new chapter in life

Tgw61 profile image
6 Replies

Starting calquence Thursday, I guess no more vaccines, was really wanting that 3rd covid shot.

And about that diarrhea I'm a little worried since I'm a truck driver 🤭

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Tgw61
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SofiaDeo profile image
SofiaDeo

If it matters, mine from ibrutinib wasn't sudden. It took a while to develop, like weeks. For me, bleeding (nosebleed) was the thing that happened within 24 hours of a BTK inhibitor. When I started the study drug CG-806, I was prepared & adjusted my diet "just in case." I didn't get it on that medication. And I was proactive taking fiber tablets twice a day and eating more soluble fiber, and less fat overall, when I did Venclexta induction. So now I have soft stools, but rarely diarrhea. If I don't eat enough fiber (the pills, steel cut oatmeal, flaxseed in a smoothie, fruits & vegs) and I eat too much fat, my bowels rebel. So now I put salt/herbs/spices on veggies instead of oils. Guacamole or salsa on salads instead of traditional dressing, mustard on sandwich instead of butter. (Luckily, I hate mayo) Fried foods are maybe once a week treat. Maybe you can start cutting the fat/increasing the fiber the next few days, and continue for a few weeks? Better to be possibly constipated IMO. Having to take a stool softener is better than having to take Imodium.

It's a crapshoot if you get a side effect or not. I now keep adult diapers around for bad days. And wipes.😝

Also, diarrhea with ibrutinib, in a lot of patients, stops after a while as your body adjusts. Here's a link to how one docs manages ibrutinib side effects, it likely can be applied to Calquence since it's a similar BTK inhibitor:

ashpublications.org/blood/a...

happyclappy profile image
happyclappy

Hi! I drive a truck over here in Blighty and started the Calquence journey back in April. Toilet stops haven't been an issue. It's normal to be given antivirals, antibiotics, antisickness and antidiarrheal drugs to counter the effects of the Acalabrutinib. Hardly needed the antisickness but I take an antidiarrheal perhaps once a week.

My main issue has been achy joints. I'm sure I don't cover anywhere near the mileage you do, but when I climb out of the vehicle I struggle to move because my hips are stiff and achy. This was a bit of a problem prior to Calquence but since being on the drug it's got a whole lot worse. I'm assured it will ease with time but I'm not holding my breath just yet.

Truck on dude! 🤘

Pete

Cllstage2 profile image
Cllstage2 in reply to happyclappy

It's probably your uric acid levels the medicine raises them significantly...it makes your joints ache... hopefully your on something to keep those levels low like allopurinol...

2016miniman profile image
2016miniman

Hey--I feel your challenge..been there done that. Just stock up on anti-dirraha meds!Good Luck!

Eucalyptus22 profile image
Eucalyptus22

I've been on Calquence for a year (next month). A bit of diarrhoea but got anti diarrhoea tablets for that. Things settled down and now don't need any tablets. I use aromatherapy oils to keep my achy joints under control and that works well. If you get a headache, have a coffee! Many people on here recommend that.

Apart from that I would say that for me Calquence has been a wonder dug. Feel better than I have for years. Good luck with it.

As for the 3rd dose, we can live in hope! I didn't get any antibodies with the original shots and to be honest not expecting much from the third, but can hope and pray.

Tgw61 profile image
Tgw61 in reply to Eucalyptus22

Thanks for the post, that's the one I've been looking for. Feel better already. 😃

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