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Worried about CML progresing :(

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Hi All,

I am Bob from India and following this forum for a long long time. I was detected with CML in December 2008 at the age of 25 and started my Imatinib Glivec from January 2009. So it's nearing 9 years. To tell you one thing initially when I came to know about CML I though about suicide. Then my doc said about Glivec and I started believing. To be very frank with you all , I never felt any severe side effects from the time I started on Glivec other than Acid Reflux and some cramps. Also my skin become very fair which I didn't mind. Now after all these years for last couple of years I am having problem dealing with the disease. May be because I got married and now I have to think about my wife. My Doc had said that I have been doing quite well with all my blood test like my BCR ABL right now is 0.101%.

Now to come to the real issue of mine. I have this feeling in my mind that I will progress from CML Chronic stage to Accelerated or Blast stage. I don't know why. I have this issue of not having enough platelets throughout this whole duration. Currently I have 61,000. Once doc gave a steroid when I had low platelets and once he stopped the medicine for 7 days when I had 42,000 and then again started the medicine after my platelets improved to 85,000. Now my question is whether platelets are important? if yes how much? I never had bleeding. Regarding my TLC(WBC) and other blood counts all are in range. The only problem I have is platelets. Also since I come from the North-East part of India my doc says that that region people tend to have a low level of platelets compared to other parts of India. I am taking my treatment from South India as I work in South of India.

Also whenever I have slight issue I tend to connect it with CML . Currently I am having cold and cough and I am worried whether I have progressed to some other stage of CML. Also for the last two days I am having Night sweats which I am not sure why as I don't have fever. But I do have depression and anxiety issue. Also now a days I do face back pain sometime. Also in the morning I have to vomit most of the days as I get severe acid reflux. I take my medicine at night.All in all out of these 9 years I have great 7 years and I am not sure why last 2 years I am having so many issue.  

So guys can you please let me know whether my condition is serious? If yes why so?I will never go for BMT in life. If that situation arise in future I will prefer to die.

Hi Bob,

Why are you worried about progression? Has your doctor given you reason to worry, or is there something else that makes you concerned?

You have mentioned your platlets a lot, but what is your current PCR figures? That's the most important figure for all of us and long-term CML management.

Regarding acid reflux ... I am the man to talk to! I had terrible reflux problems but have since solved it by a surgical procedure. But there are other ways too, depending on which TKI you are on. Given I think you are on imatinib, there's no reason you couldn't take omeprazole, esomeprazole or ranitidine to manage reflux. They really work.

David.

 

Hello Bob,

" The only problem I have is platelets. Also since I come from the North-East part of India my doc says that that region people tend to have a low level of platelets compared to other parts of India. I am taking my treatment from South India as I work in South of India."

Blood count ranges do vary between different groups of people from different regions and what is a 'normal' range for some is not easily transferred as 'normal' for others. So your doctor is probably generalising but has a point - given you have not had any bleeding issues and your platelets numbers do respond when you stop therapy. I have read that as long as platelets remain above 50 then - in general - this is fairly safe. Ideally you would like to see them above 100 but again there is regional variation. So I don't think this is a sign that your CML progressing, your PCR ( at 0.1% / MMR) result should tell you that. It is more a sign that your TKI therapy is suppressing your platelets and maybe you could talk to your doctor about changing to another TKI?

"Also whenever I have slight issue I tend to connect it with CML . Currently I am having cold and cough and I am worried whether I have progressed to some other stage of CML. Also for the last two days I am having Night sweats which I am not sure why as I don't have fever. But I do have depression and anxiety issue. Also now a days I do face back pain sometime. Also in the morning I have to vomit most of the days as I get severe acid reflux. I take my medicine at night."

We all have colds and coughs - it is normal. Night sweats without a fever (have you checked if you have a raised temp?) could be to do with other issues rather than CML. The way the body controls its temp. is complex and there is probably a more straightforward explanation. If this continues then you should talk to your doctor about it.

Back pain is another issue that could be caused by so many things - You obviously are not feeling at one with the world so your psychological wellbeing has a direct effect on your physical body.... tension/depression/fear can easily translate into muscle tension and pain. If there is a way you can relax like taking more exercise/ walking / stretching etc. or even steam baths or massage would go some way to alleviate your physical (and emotional) pain.

I would suggest that a lot of the negativity you feel is caused by you suffering from acid reflux. It is no joke and is not something that you should put up with. It could be a direct effect of the TKi you are currently taking, but there are many ways to try to deal with this really unpleasant 'disease'. As David has already suggested - there are very effective drugs that do not effect how imatinib works so you could try one of the one's he has suggested.

Or you could try a more complementary way of dealing with it.... Try changing the time you take your imatinib... you really should not be vomiting in the morning so it may be that because you take your tablets at night and then lie down to sleep, some of the drug may not be digested fully and is staying in your stomach for too long... and without a decent amount of food to stop the acidic effect of imatinib building up over night. Try to take it  much earlier in the evening with a good amount of food - dinner?- and make sure you do not lie down for at least 2 hours. It may or may not help but it is worth a try.

There are herbal preparations that can be successful in some people who suffer with digestive issue like acid reflux. ... you could also try drinking alkalinised water (a teaspoon of sodium bicarbonate in 8 oz glass of plain water) which may cut the acidic effect of your stomach acid.  You should separate this from what you take your TKI as it may effect how you absorb imatinib. 

I think you need to find someone to talk with about your worries.... talking is a really powerful remedy for worry and depression.

I hope this has helped in some way,

Best wishes,

Sandy

 

 

Thanks Sandy and David.

My next BCR-ABL is due next month and I will update about them to you.
As far as my Acid Reflux concerned I will try to do what you both have suggested.

I have one question for you both: I do my CBC generally every month and other than my platelets all the others are more or less stays in the range. Just wanted to know when we should be worried by CML progressing? Because I have read somewhere that if your undergoing TKI treatment the chances are very less about progressing. Then again I read somewhere that It might progress too. So I am confused. When should we concerned or visit a doc? Whether it's the WBC(TLC), Haemoglobin or what?

Regards

Bob