Question: Hello Dr,
Thanks for your time in reading my message.
Summary - I would like to have your opinion on my mother's CML treatment complications. Current medication for CML - Nilotinib. Parallel health issues (started after CML medication) - Fluid retention in abdomain, legs / ascities since 1yr 3months. Blood report today has shown Low RBC - Anemia.
History:
My mother (57Yrs) is undergoing CML treatment since 2 years. She started with Imatinib, which she could not tolerate and ended with stiff and swollen stomach and legs. Oncologist advised to stop Imatinib and prescribed Nilotinib. After few months, she started developing fluid retention / ascites issues(1yr 3months now). After several tests Gastroenterologist ruled out issues with Liver and refered to Cardiologist as MRI showed it as restricted Cardiomyapathy. Since then, my mother is on Tide medication for urinal discharge of the accumulated fluid and fluid tapping from abdomain when fluid retention gone beyond tolerance level. This process followed for 1 year, and during this my mother lost all her nutrients, energy and weight.
On Dec'16 we went to local doctor Head of Medicine, for an opinion. Doctor suggested to stop the abdominal tapping as it has become frequest and patient can not handle and kept my mother is under observation 10days and was treated with higher dose of Tide and steroids along with Blood, Plasma, Amino acids, sodium, potassium, fat etc. during this 10days, she had average urine 4L a day. and she recovered and felt energetic while discharge. Doctor recommended higher dose of Tide at home. Things are smooth for 20days and after that even with higher dose of Tide, her urine levels went down and ended up with swollen abdomain and legs.
At this moment, she is again hospitalised, blood and plasma will be given again. Urine quantity has increased since yesterday. Oncologist has advised to stop Niltonib for a week and observe the changes.
Meanwhile, today's (23Jan2017) blood report is showing Low RBC / Anemia.
Although Nilotinib is keeping her WBC count in normal range, are the parallel health issues ascites/anemia the side effects of Nilotinib? If so what can be recommended as next step?

We are in continuous touch with doctors, but as we are based in small town in XXXXXXX we are not able to reach to XXXXXXX doctors/ bigger hospitals outside. I would appreciate if you could give your expert advise on this.

Thanks
XXXX

Hello Dr XXXXXXX

Thank you very much for your response.

Answering your questions:
1. Liver and Kydney functions (Link to the reports given below): In my mother's recent test, all were normal except : SERUM SODIUM - 124.6 mEq/l, SERUM BILIRUBIN TOTAL - 1.7 mg/dl, and SERUM BILIRUBIN DIRECT - 0.6 mg/dl.

2. ALBUMIN - SERUM ALBUMIN - 3.9 gm% (with in normal range)

3. Anemia - Blood test (report link given below)not in normal range are:
RBC-2.86, HGB 8.4, HCT-24.7, Absolute Count NEUT# 8.19, LYMPH# 0.57

4. For CML - Molecular Response - In the past, we did molecular test BCR-AbL. Last year she achived Molecular remission and result was 0% and responding well to nilotinib. The same test was conducted again in May'16, at that time nilotinib was put on-hold for some time due to severe ascites, then the result was 3.4%.

The concern is if Nilotinib is causing all these side effects then what is the recommended alternative for treating CML? At the same time, if nilotinib remains on-hold for a while or a different treatment suggested, then would the damage caused to my mother's liver / heart, gradually go back to normal stage? Would the fluid retention problem disapper slowly? Or whatever damage already happened to liver / heart would continue remain the same regardless of CML medications?

Also as mentioned before, continous abdominal tapping for taking the fluid out during last 1 year, had impacted my mother's energy levels, large weight loss, nutrients loss and other deficiency. The new doctor (Dr specialist in Medicine) who is currently treating my mother since Dec'16 has said no more abdominal tapping, as this may result in a further complicated situations(life threatening). The Doctor is now trying to discharge the ascetic fluid through urine by giving high dose diuretics injections like Tide lasix etc. In addition to this blood, plasma, some steroids, amino acid/astimin, sodium/fat etc are/will be given to my mother with in next couple of days. Although the process sounds safe but as this process is slow, and my mother has to be with the discomfort as fluid retention is on-going.
I would like to check with you, if the current process of fluid removal is recommended?

Reports (complete Blood & Liver tests) :
http://i1133.photobucket.com/albums/m586/ven82in/Misc/IMG-0000-WA0011_zps8jjuipeq.jpg

http://i1133.photobucket.com/albums/m586/ven82in/Misc/IMG-0000-WA0006_zps6h6mwrbt.jpg

Thanks again for your valuable time and opinion.

Regards
XXXX