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CML & HIV

I was dx of HIV in 2002 and in Dec 2008 of CML. Over the years i was very healthy and was coping very well until i got CML. I was put on Hydroxyurea and Allopurinol for few months before starting on Glivec 400 mg. I never had any major side effetcs except nausea, feeling sick in the stomach, very fatigue and 3-4 tiny reddish blisters on my limbs at all times, and bruises and scars on my body now. I cant work out more than 30 minutes in the gym...but i make sure i go to the gym and live life as normal as possible without pondering much about my chronic diseases and its side effects because there is no point thinking about it. I make it point to swallow the pills ( Glivec and HAART) and keep living life as normal as possible . I cant complain too much about minor side effects because I know i have some serious diseases and I am on very strong medication and side effetcs are part and parcel of it..as long as it does not cause major problem.
I am very new to this site and after reading other CMLer's experience..I feel stronger and more motivated and i know i have a long way to go and believe the cure is on the way for CML and HIV.
I would like to know if the fatigueness will become lesser by time while on Glivec or the tiredness will remain forever or get worse. Is there any gym goer here?
What is the best food for CML to remain healthy.?

take care...Ravi

Hi Ravi - I try to get to the gym at work 2-3 times a week.  I wasn't a big gym go-er before the CML for some time but always kept reasonably fit doing other stuff.

I have found that I cannot run for more than about 25 minutes as I loose sensation in my arms and needles and pins, not sure what the problem is, had various ECG stuff at the Hammersmith but nothing untoward.  So I try and mix up my aerobic excersice now wih small runs, bike and rowing sessions.

Also started doing some weight machines but found I could quite quickly put on musle bulk I didn't really want, which from talking to others on Glivec can be a side effect.

As for food I just try and maintain a healthy balance of food, try not to eat too much.  I don't stop myslef from eating anything particular as it is one of lifes pleasures IMO

With regard fatigue it is something most of us suffer from to one degree or another.  However what I findworks for me is that if I start to feel a little jaded or lethargic something as simple as mowing the grass or a walk to the shops can blow it away.

Rob DX in Dec2006 PCR 0.12

 

Ravi, Certainly in my case the fatigue associated with Glivec has eased as time has gone on.

I was diagnosed in February 2007, had always been a keen runner and found that trying to run in the early days of Glivec was very hard. Now I'm 3 plus years into treatment, exercise is certainly easier, although I do tend to mix in other exercise as well as running. Cycling has been good plus gym sessions(  very light weights but greater number of reps ). I've been aiming for about 140 minutes of aerobic exercise each week although don't always succeed each week. The real issue that did concern me in the early days was any possible effect that exercise might have on action of Glivec, but given that my PCR results have dropped generally over the 3 years, this concern appears to have been unfounded.

 

Taking Glivec with my evening meal has proved a good move. Originally I used to take it in the morninng with Breakfast but found that the amount of food was not enough and this  led to gut problems.

The other issue that occurs to me, with exercise, will be how your red blood cell count is affected or not , by the Glivec. My count  dropped initially but has gradually risen, although still quite a bit below its  pre CML state. Low red blood cells mean poor oxygen carrying capacity and hence effect on exercise.

Hope all goes well with you in your future treatment

Andy 

Dear Ravi,

welcome to this forum and thanks for introducing yourself and telling your story. I cannot imagine what it must be like to suffer from two life-threatening diseases but you show great positivity and determination.

I agree that it is important for all of us to try to keep as fit as possible- I think you are doing really well to work out for 30 minutes- given the combination of such strong medication for both diseases. I have friends who are taking  HAART so I know it can be challenging to adhere to the strict timings that are important here, especially over the long term.

I am heartened that you have found this forum of some help and encouragement. Regarding food/diet etc. I think that what others have said it true.... you need to eat well but don't stress too much about it. I think that freshly prepared food is good for everyone whether we are ill or not. 

I do think you might do well to follow the advice to take your CML medication at dinner (or with the largest meal you have during the day). I too found this counteracted the nausea. It also meant that the tiredness I felt at around an hour after taking imatinib became less of a problem as I would be able to sleep it off over night. I never really liked taking imatinib during the day so when I switched to the evening it solved lots of problems.

The fatigue you complain of does get better for most- at least, over time you learn to pace yourself better and not push to achieve too much in one day.

One important thing you should do is to get in the habit of drinking at least 1.5 litres of plain water- in addition to all the other drinks you might have in a day.  This helps to support the kidney function as well as supports your liver which is the main organ that synthesises imatinib - and I assume the HAART drugs too.

If you are not already aware you might be interested to read the EATG (European Aids Treatment Group) Newsletter... link below 

http://www.eatg.org/Publications/EATG-newsletter

Best wishes and take care of yourself,

Sandy