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Hello All, 

My husband has been recently diagnosed with CML (2 weeks ago) in chronic phase. Until now he's still on hydroxyurea until we get some government help to access some TKI medicition. I have some questions:

 

1. Is it normal to be losing weight yet have a huge food appetite while he's still on hydroxyurea?

2. Understand from our specialist that in our country (Malaysia) the current TKI that is available is Nilotinib. And he is likely to be prescribed with nilotinib. However, based on my reading on many websites, normally CML patients would start with Imatinib unless there's feedback that the patient does not respond to imatinib then only change to nilotinib... can they straight away start with this second gen TKI? 

 

Thanks in advance 

jacq

Hi Jacq,

Without knowing the details, if your husbands spleen was large it can push against his stomach. This happened to me, which made me feel bloated before diagnosis. Hydroxyurea works pretty quickly, so if his spleen is reducing in size it is possible his stomach feels more comfortable and thus he feels like eating more! I'm not sure why he'd be losing weight though - has it been much since starting hydroxyurea?

On the second point, it's totally routine to start with nilotinib - patients don't have to start with imatinib, though many do. Your doctor may have a good reason for going straight to nilotinib such as a particular mutation in his bone marrow samples. Other doctors just think it's a better drug than imatinib so prefer their patients to be on a second generation TKI.

David.

When I was first diagnosed I was put on hydroxeura as well.  It reduced my white count, but also reduced my platelets, red blood and neutrophils to the point where I had to be hospitalized, blood count changed rapidly in a week.  I was told after that my dosage should have been reduced.  Hair loss rapidly while on pills as well. Swollen spleen as mentioned causes to loose weight, maybe it has gone down.  Weight loss was more noticeable on hydroxeura but I think it was happening before for me. 

i am now on spyrcel 100, not sure about other tablets.

Hello David,

thanks for the feedback. He was actually losing weight about 2-3months prior to CML diagnosis. Based on physical examination, he had no enlargement of the spleen/any sort of pain at the stomach area. He started hydroxyurea about two weeks ago with 3caps on the first week, then reduced to 2caps on second Week. Today he was told to reduce it further to 1cap per day. He will get his nilotinib prescription next friday. 

Based on what I'm reading so far on CML, can I say that hydroxyurea is just a "containment" medication to lower the WBC, while a TKI is considered a "preventive" medication to ensure the body does not produce the problematic WBC?

His prelim FISH report did mentioned that there's a 9-22 translocation. 

One more question: once started on nilotinib, would you recommend bed rest or one should go about being active just like normal? Also how frequent should the blood tests be repeated? 

 

Thanks in advance again... I'm glad I can finally discuss this with fellow CML as it is hard to confide with anyone about this disease 

rgds, jacq

hello JacqJohn

for the post Fri, 27/10/2017 - 7:07pm

questions about hydroxyurea , i think it will be better if david answers them. but you seem to be right. 

i just wanted to write about fish test. but first 

https://www.cmlsupport.org.uk/section/testing-cml

and 

https://www.cmlsupport.org.uk/thread/8279/pcr-fish-results

in theory result of fish test accuracy should be like %5 or something like that. 

but in my mother's test results 

01/10/2015   qrtPCR test result : %54.6124 (IS)

11 days later FİSH test was made 

12/10/2015 Fish test result : % 41 bcr - abl positive 

 

3 month later , the hospital hasnt PCR test's kit . they only made Fish test . 

11/01/2016 Fish test result : %100 bcr-abl negative ( % 0 ) 

3 month later at different hospital

30/04/2016 PCR test result : % 4.3562 

and we never made another fish test . there should be reasons why do they this test , but in our expriences fish test are not dependable.

 

and about blood tests

it depends on your test results but our history 

until getting Complete Hematological Response , once in a 15 days . then once a month until getting MMR.  after MMR once in 2-3 months . ( basically just for medicine )

except at march 2016 my mother was in Neutropenia , they prescribed antibiotics and checked her one week later .  

PCR test once in  3 month , fish test as i mentioned before only twice . 

 

also the procedure is 

http://www.nationalcmlsociety.org/living-cml/monitoring-tests

best wishes

ps english is not my native language

 

 

Hi again,

Losing weight prior to diagnosis is really common - I lost several kilos prior to being diagnosed. So as long as this stabilises post-diagnosis there is nothing to worry about.

Hydroxyurea (also knows as hydroxycarbamide) is pretty much as you describe. It's used to lower blood counts, but doesn't actually do anything to fight the CML. However, for many of us it's a good idea to give the high blood counts a good whack with hydroxyurea before starting the TKI. It's a common approach. As you supposed, the TKI is there to fight the CML (which in turn helps blood return to normal).

That 9-22 translocation is the Philidelphia Chromosome, the hallmark of CML.

Regarding rest / activity - everyone is different. There is no particular reason to rest if he doesn't feel like it, and similarly if he feels like resting that's fine too. I know I was absolutely wrecked and exercise, even mild, would have been out of the question. If he listens to his own body, and doesn't push any harder than he is totally comfortable with then activity or rest will work itself out.

Lastly, in terms of blood rest repeat schedule it is often different for every patient. Someone who has very high counts and is in a bit of a dangerous place will be checked more frequently than someone who was caught very early. However, once things normalise it's routine to have tests every 3 months on an ongoing basis. How often are they running tests now?

David.