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Nilonotib and pancreas/stomach issues

Hello to all

Im now into 4th week of 600mg daily Nilonotib and experiencing various side effects but the one of the main problems is how it’s affected my stomach.  I’m now starting to lose weight, lost appetite and when I do eat I feel full and quite often nauseous.  I had similar problems whilst on Imatininb but not to this degree.

i have read that these drugs can have a negative effect on the Pancreas, which is of great concern.  Have any of you had similar problems and how was it resolved?

 

regards

Mick 

I had trouble with my gut on nilotinib.  I had to cut food way down for a couple weeks (losing weight and weak) and my gut settled.  After that I had limited appetite and eating became a chore.  I actually wrote down reminders to eat and made sure I ate enough.  This was workable as far as maintaining weight with no gut issues.  I was later switched to dasatinib for other reasons and that has been much easier on my gut, just a touch of nausea sometimes.

 

Thanks for the reply.

I had these stomach issues on imatinib but now I have no appetite as I know eating causes nausea and a bad gut.  Hoping this passes as I’ve already lost weight I didn’t need to lose!  
Were you ever told the reason why it affects digestive system negatively?

I don't know why it affects the gut.  I have gut problems anyway so assumed it was me.  Even on the dasatinib I do better with smaller meals and eating some of my food as snacks, basically 5 smaller meals.  

Yes smaller meals with high nutrition appears to be good general advice.  Now also purchased protein powder to supplement the diet. 🤞

Hello,

I am new on Tasigna for about 3 weeks. The first week I started to get bad stomach pains that felt like contractions and disturbed my sleeping and eating. I spoke with my doc and they allowed me to take Nexium and 3 days later I was completely back to normal, no pain.

Try DigestGold right before you eat.  That helped me in the early phases of 600 mg Tasigna. I also ate more smaller meals throughout the day and that helped a bit. Also, probiotics have helped some with this issue. 

I am now on a much lower dose (150 mg/day) and have no stomach issues so have gone back to regular sized meals and no Digest Gold or probiotics anymore.

Good luck

Thanks for the reply 😁

I’m at haematologist tomorrow so hoping I can get a clearer idea of what the actual problem is.

i will have a look at those enzymes as it may be a good move for my stomach! 
 

Regards

 

Mick

Thanks for the reply!😁

Was yours acid reflux?

from the symptoms I had when it was very acute last it more like pancreatitis.  Hoping to get some clarification tomorrow!🤞

 

Regards

Mick

I’m at the more extreme end of the spectrum when it comes to indigestion and CML. 

Imatinib didn’t work for me, and that’s the only TKI that works with reduced stomach acid (PPIs, omeprazole, Nexium etc) so when I moved to dasatinib I had an issue. Endure the acid reflux, but potentially cause problems later down the line ... take a higher dose of dasatinib with a PPI (very imprecise science) or, what was a more radical option, have a surgical procedure called a Nissen fundoplication. I went with the fundoplication. Not a lot of fun, a week to ten days inpatient and a fairly long recovery but it was a great decision. 

No more reflux, 20mg of dasatinib now and MR5. 

David.

Pleased to hear that got fixed!  That sounds like a complicated procedure.

i have had meds lowered today so hoping it will help alleviate the problem I’m having.  I have had 2 acute bouts of pain which from the symptoms and location tie up with pancreas problems.  Lost weight again as eating has been a problem.  You could make some money using this a diet plan! 

 

Regards 

Mick

Mick, I lost nearly 20kg (I’m not a big guy to begin with) so have made many a joke about the leukaemia diet over the years!

It wasn’t a complicated procedure, but it was a fairly major one. But I think it’s one that could be considered more by CML patients with persistent reflux. Proton pump inhibitors muck around with TKIs and also (in my gastroenterologists words) “leech” from your bones so you don’t want to take them long-term, especially if it means you need to take more TKI to counteract. 

My PCR results following fundoplication speak for themselves. One of the best things I’ve ever done. It was never suggested by my haematologist, GP or anyone else ... but by my sister (a surgeon, but not a stomach one).

David.

David the information is worth knowing as I may have been suffering GERD symptoms prior to being diagnosed with leukaemia.  Hopeful to get some clarification on the cause of that soon. 

Regards
Mick

Hey Mick,

Me too ... GERD was pre-CML but I managed it with PPIs and that worked fairly well to be honest. 

When they opened me up, they found it was a case of having a pretty loose connection between my stomach and oesophagus. A loose sphincter, basically (I never knew we had more than one!). Also a hiatus hernia that they fixed while they were in there!

David.

That’s a very thorough service they did while they were in there! 
It must have been a huge relief getting some relief from all the associated problems it caused!!

Mick