Newly diagnosed. Need advice

Hello Madhu and welcome,

I am sorry you have been diagnosed with CML at such a young age. We all experience the same sense of shock at diagnosis but it does help if you can talk with others who have CML. I will attempt to answer your questions.

Is it normal that the platelet count decrease and sgpt increase?

A:  Depending on your individual profile, platelets can be effected by TKItherapy... i.e. they can drop below normal for a time as the drug works and targets cells that are problematic and are involved in the cascade of effects from Bcr/Abl positivity.  However, CML expert clinicians do allow platelets to fall below normal range as long as they do not fall too low... some say below 100 others below 50.  Generally speaking, with time your counts will begin to normalise. 

Can I do any diet changes to improve the counts?

A : as long as you eat a wholesome diet with fresh foods etc. you will benefit in some way... however, I do not think there is any evidence that diet will improve you counts per se.

Does switching to vegetarian diet help?  

A: No, not to my knowledge

I read over the internet that carrots can prevent growth of cml. Is it true

A: highly unlikely!  CML is not a disease that is related to how or what you eat.

If I travel Would the change in climate affect the treatment? (UK has cold climate compared to India).

A: No, there are many of us here in the UK- as well as many who live in colder climates - that benefit by TKI therapy. Cold climates do not affect treatment.

Is it a good idea to think about travelling to new work place in this situation (Assignment duration is for 6-9 months in London)? or Should I leave it for now? I dont want to take any risks with my health.

A: This is difficult to advise as it would entirely depend on how your react to new environments from an emotional point of view. To move to a new country/work environment so soon after diagnosis would be a challenge for some people. Given that your therapy is still in the early stages then it may be a good idea for you to delay travelling until you are more sure of the side effects (i.e such as falling blood counts such as you platelets etc) have stabilised and you and your doctor can be more confident of you response to imatinib 400mg. 

Would work stress has any affect?

A: stress of any kind has an effect in some way, but more on general health than on CML.

I was in London for one year from Sep-2014. I have registered with NHS but never visited the hospital. If I travel would NHS accept to treat? (My doctor in India told that he could help me with things over phone and email. But he wanted me to definitely meet a doctor in person at least once in a month).

A: I understand that you would need to register with a GP and as you have a contract to work for a specific time period you would be entitled to NHS treatment. I will try to find more detail on this.

Can qpcr and other tests be done in a private lab with out doctor's prescription?

A: Yes this is possible.

How much does it cost for private consultation and private testing?

A: This would depend on the individual clinician. If you would like to access private healthcare then I suggest you do so at a centre of excellence for CML such as Imperial College NHS Trust at Hammersmith Hospital. QPCR testing is very expensive.

Would there be any emergency situations?

A: I am not sure exactly what kind of emergency you mean. Re: CML If you respond well to therapy and you are in good health generally then you should be OK as long as your therapy continues to be effective and you do not suffer serious haematological side effects such as dangerously low blood counts. As you have been diagnosed for such a short time it is very difficult to advise.

In the second week of Imatinib treatment, I had thigh muscle pain. It was better after 4-5 days. Would the side affects be there only in the initial days or would they be on and off over time?

A: muscle and joint pains and cramps are a common side effect of imatinib. For most of us this effect does reduce or disappear with time.... typically within the first 12 weeks. However some people continue to suffer from muscle cramps intermittently over the longer term.

Regarding your dose of imatinib- if your platelets continue to fall your doctor may want to stop treatment for a week or two to allow your platelets to recover before resuming treatment. 400mg is the standard effective dose of imatinib. You need to wait until your counts have stabilised before you travel.... maybe after 6 months you and your doctor would be more sure that imatinib is the correct TKi for you.I hope this is helpful. Sandy