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what to do next?

hi everybody,
I am a 25 year old indian girl.I joined to this group 1 year before.I got cml 2 years before and take glivec for past two years.but my ph level(fish report 84%) didnt decreased.
then tissue match with my own brother also completely mismatched.then i undergone mutation analysis for glivec . that test report was nil.

Now i don't know what to do? and also my wbc reduces from 4300 to 3100.my doctor advised me to take some trial version drug . i dont know the exact name of the drug.i think its SKS060 or something. but he told me that " u cant able to expect a good result compare to glivec".now i am taking 800mg glivec.
My doctor advise me to continue the same dosage . Is it useful to take this dosage or not? plz anybody help me!

dear Kiruba,

What you might need to do is to get a second opinion. It is essential that you see a doctor who is expert in CML.

Given that your PH+ levels have not decreased from 84% over the last 2 years you really should have had an increased dose of imatinib/Glivec before now.

Even if there is no resistant mutation present, it might be that you are resistant to imatinib/Glivec for other reasons which are not currently well understood.

When did you start taking 800mg?

The higher dose of 800mg Glivec/imatinib might reduce your Ph+ levels.

If you do not see some sort of significant reduction in Ph+ levels within 2 months or so you should ask your doctor to organise a change in your therapy.
Currently the drugs that are available are:

dasatinib/Sprycel
OR
nilotinib/Tasigna.

BOTH these drugs are very effective in controling CML in patients who are resistant to imatinib/Glivec.
Many patients have vastly improved responses to these drugs and have cytogenetic responses with Ph+ levels reduced to much lower molecular levels.

So before you consider anything you should ask your doctor if he is willing to prescribe either dasatinib/Sprycel or nilotinib/Tasigna if you do not respond to 800mg imatinib/Glivec.

If he cannot do that for whatever reasons then you should ask to be transfered to another CML doctor.

SKI 606/bosutinib is a 3rd generation TKI and is in phase lll clinical trials. This drug is showing a lot of promise with an improved side effect profile.
However unless you can go to a centre that is involved in the clinical trials you will not easily get access to this drug.

Please let me know where you are currently being treated.

Best wishes,
Sandy

Sandy

Hi Kiruba,

It is time to change doctors. From the little you have reported, you are receiving sub optimal treatment.

I know several patients who are doing remarkably well on SKI-606 after failing on Gleevec.

You need to get to a CML specialist as quick as you can. They will do mutation testing and suggest one of the newer drugs. If you tell us where you live, we can suggest a specialist in your area.

Zavie

Hi Kiruba,

When my son was initially diagnosed at a prominent New York hospital, he was put on 800 mg of Gleevec. That's because there were recent studies that stated that patients who take the highest tolerable amount of Gleevec will have the most optimum results.

Long story short, the dose was way too high for my son and the doctors just didn't understand CML well enough to properly adjust his meds.

My point is that this is a rare disease that can be mishandled by even the best oncologists. I agree with the other posts here that you must definately get another opinion from a specialist.

There's something that doesn't seem right here and perhaps it could be handled with another medicine. Search for a doctor with experience treating CML. Treatment options are changing all the time and the options have greatly changed since the time you were first diagnosed.

Please get another opinion. Even inquire on this forum for a recommendation to a doctor in your area.

Best wishes to you.

Regards,
Tracey

Hi Kiruba
I know this may be a long shot and may not apply to you but my consultant told me of a case where someone was in a similiar situation as you and they found that his diet contained a lot of grapefruit which apparently stops the Gleevec from working. Once he stopped eating grapefruit the gleevec started to have an effect.

Good luck

Chris