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Please help my husband....

My husband is 40 years old and was diagnosed with CML in Jan 2018. His 9 month pCR is 0.043%. As posted previously he has had a very rough time dealing with the diagnosis.

He has been on 100mg of Sprycel since January. Initially he had some side effects including low blood counts. He has recently been having a significant amount of stomach discomfort and nausea which we learned were caused by damage to his small intestine. He has not been taking his medication (Sprycel) for 2 months (without my knowledge), however his blood counts are normal. He is an engineer and has done a lot of self research - he believes that his body has not been generating new blood for 6+ months and that he has bone marrow sinusoidal endothelium damage. He also believes that due to the small intestine damage he is not able to absorb any medicine or nutrients from food.

Please help / advise on his situation and hypothesis

If he continues to not take a TKI, his PCR numbers will start to increase and eventually his blood counts will become abnormal.  It seems Sprycel has been quite effective at bringing his CML level down.  Perhaps a low dose will be effective for him and reduce or eliminate his side effects.

Has his intestinal problem been attributed to the TKI therapy?  Or is it suspected to be something else causing it?

He thinks the intestine issues are tied to the TKI as he has been having issues with his bowel movements (some evidence of blood and what appears to be tissue). We are doing more diagnostics now to verify. Has anyone else experienced anything like this?

His blood count is in the normal range however his WBC has been trending down since treatment began (even after stopping dasatinib) - currently at 5.79. He thinks that this is because he has acquired a secondary condition - MDS or aplastic anemia. Has anyone else expiernced or heard of a similar case?

Hi there

I’ve had CML since April 2016 and have been on Sprycel since this time. Initially full dose and after about six months tapered down to 50mg per day.

I have had moderate gastrointestinal discomfort since I started Sprycel. At night I have been waking with stomach/GI pain and unable to get back to sleep. 

Although my BCR ABL has plateaued at around 0.02 I am seriously considering dose reduction to 25mg for the next six weeks or so to see if my GI issues settle down and if my BCR ABL can be held in check.

Anxious about this.

How did you find out your husband had small intestine damage. Did he have some kind of scope?

Agree with Kirk that a lower dose of Sprycel could be a good option for your husband to try.

 

 

He had a CT scan which showed intestinal telescoping in 3 spots. For further diagnosis we just did a MRI but it came back completely normal (no signs of telescoping or organ damage) however a stool sample showed some signs of infection so he is currently on antibiotics. The discomfort and bloating has not subsided  so we are now considering a capsule endoscopy.  He refuses to go back on dasatinib until his stomach issues are resolved. 

Imatinib might be a good option to talk about.  It generally seems to have less worrisome side effects than some of the other TKIs.

Good luck to you and your husband. I hope he gets some relief. 

Keep us updated.