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Recently Diagnosed with CML

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Hi,

I am Shawn 34Yrs old, i live in India.  I am recently diagnosed with CML (2-3 weeks back) and i am on Veenat 400 MG (Generic Version of Imatinib) once a day.

Initially I was 60K of WBC at the time of diagnosed, and it was jumping between 50 – 60K

I am completely freaked out and in a complete shock and stress. Not sure how to react for my CML.

I am in mind set of 5-6 Yrs of survival not sure whether I am correct or wrong. And don’t know what to do and how to react, after know about the CML I started getting more worried about my wife and kids and my anger is increased.

I don’t have any friends to share and moral support me.

Currently 2 weeks on Veenat, my WBC come down to 14K from 50K.

And the Blast cells in the Blood has been reduced to 6 from 10.

But I see lot of change after the Veenat, need to know is it normal

1.     My legs and hands are paining almost every day and any time. Mostly on the Joints or near to the Joints. Some time it is like muscle pain and some time it is more like bone and Vein pain and this is giving me sleepless nights sometime

2.     After Veenat I lost nearly 3 -4 Kg of weight in 2 weeks, even though I eat the same portion size as before

3.     Due to leg and hand pain some time I feeling very tired and chilled

4.     After every Meal I get the urge to go to toilet, the stool is normal not black or green and it is not watery or loose Diarrhea but the frequency is become more and most after the Dinner is sure

5.     Some time I feel very hungry even after Big Meal (like after 1 or 2 Hrs)

6.     My Sweat started stinking more and 1 sweat more in nights only on my head

Is this Symptoms are normal? Are these are side effects?

Please help me

Note: I am doing my WBC check almost every weeks and RBC 4.48, Hemoglobin is 13.1 and Platelets are 188.

I smoke 7-10 cigarette per day and occasional drinker (like 2 or 3 month once)

Hello Shawn and welcome,

To put your mind at rest I will say first that over 90% of patients diagnosed in chronic phase CML respond very well to TKI therapy and go on to live out their normal life span. Most of this 90-93% will have to take this kind of therapy for life - or until a 'curative' therapy is found. Research on that continues.

Nevertheless TKI therapy has revolutionised the prognosis of CML and the 3-5years timeline was before the advent of imatinib (the first generation of this class of drugs).  Your fears are a natural response to diagnosis but please be reassured that many of us live our lives as normal apart from taking therapy on a daily basis. 

The side effects you describe are all familiar - the increase in your visits to the toilet are probably because your body is getting rid of all the abnormal white cells as imatinib kills them off so this should lessen as your cell count normalises. The joint pains are also a common side effect and for most will recede within the next 12 weeks. For me it was at 12 weeks to the day from starting with imatinib that my joint and muscle aches stopped.

Night sweats will also cease as your therapy continues and your counts normalise. Try to learn as much as you can about CML and its therapies. Although it is a very rare disease there are many thousands of people worldwide who are alive because of TKI therapy. 

Have confidence,

Sandy

HI Shawn,

I was the same age as you when diagnosed.

You're going to be fine - almost certainly. You ought respond well to therapy and live a normal life-span, even if complicated with medicine (like all of us). Sometimes things to get more difficult, but it's a minority of cases. So the good news is that you're likely to do well, but you still need to be carful..

All of the side effects you mention are quite normal. Some will resolve themselves, some might not, and some might just fade. You might have to learn to live with some. You've also become much more aware of your body so notice some things you might not have spotted before.

I know it's hard, but try to relax as much as you can. Aches and pains are normal enough, but if they become really hard, or persist it's important to keep track. I had a lot of aches at the start and it took a change of medication to (mostly) sort things out.

I think the first 6 months are hardest on the mind than the body in many ways. It's very stressful.

David 

Thank you So much Sandy and David, good to hear that and got more confidence 

i have my Next visit to Dr in 4 days with my CBC (after 10 Days i am checking my CBC). and for the past 3-4 days i don't have any pain and i am back to my normal weight (still i am over weight i am 100 KG and 6.0 Feet ) and the frequency to toilet has been reduced 

Also i have a question: is it a good idea to switch to Gleevec 400 MG from Veenat 400MG ? as the Gleevec is a Original Version 

i will keep you posted and my Dr update

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Newly Diagnosed !!