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New on the forum, not new to CML.

Hello everyone,

A little about myself, I am 33 years old, was diagnosed in 2008 in chronic phase and initially responded very well to Glivec, almost hitting MMR4. In late 2010 I got an early morning call from my oncologist who needed to see me immediately due to the BCR-ABL levels jumping up to 2.8 log. During the consultation he sent off a mutation analysis sample, (which came back negative) called in my brother for tissue type testing, (he is a 100% match) and suggested increasing the dose of Glivec to 600mg. For about a year there was no substantial change in the numbers and he sent me to the transplant unit in Cardiff for a second opinion. Since February last year I've been taking Tasigna and in recent months, the BCR-ABL levels have shot up to between 15 and 13%. I am obviously very worried, especially since my peripheral blood count showed a high levels of white cells. The consultant I saw didn't seem that worried as I've had a bunch of injuries in the past few weeks and had two teeth fillings which she said could be the cause of the increasing WBC.

I know full well the dangers of a transplant but I'm seriously considering this option as liberation from the hell of constant anxiety.

Hi,

I'm sorry you're having such a a bad time. it's pretty rare to lose MMR response on tkis. BMT are pretty for cmlers too. If i were you i'll try another tki, like dasatinib (my cml specialist has patient who did not respond to glivec and tasigna, but wet pcru with dasatinib). I too suffer from anxiety but i think tkis are better than run for i transplant. i would have another opinion from another doctor too. If you can stick more time with a TKI you'll probably see more and more new treatments coming around.

p.s.: do you mind if i ask how was your adherence to therapy when you lost response?

Thanks for the advice and empathy. I'll see if my consultant can get hold of Dasatinib which might be difficult as we don't have a Cancer Drugs Fund in Wales. With respect to adherence, Imatinib would sometimes make me vomit, so I might have lost some of the drug efficacy due to not enough being in my system. I'd say that my adherence was about 98% as I know the consequences of not taking the drugs.

You ought not to have a problem accessing Dasatinib in Wales if you have tried, and not succeeded with imatinib and nilotinib.

"Dasatinib (Sprycel®) is recommended for restricted use within NHS Wales for the treatment of adults with chronic phase chronic myeloid leukaemia (CML) and accelerated phase CML where there is resistance or intolerance to prior therapy including imatinib mesilate."

More importantly, are you being treated at a Centre of Excellence? And if not, would you be open to visiting one - there can be "shared care" arrangements which allow you to get seen to at your local hospital for routine blood tests, etc., but also access to a specialist oncologist in a clinical setting which has lots of experience with CML.

I agree that you need to be seen at a centre of excellence (if you aren't already). You shouldn't have any trouble accessing Dasatinib but you may also need to look at either Bosutinib or Ponatinib - have you had a check for mutations?
K

That's very reassuring, I was worried Dasatinib would not be possible to get hold of. I see several doctors, the local hospital writes up my prescriptions and sends off the blood for the pcr test and I see the head of the bone marrow transplant unit in Cardiff who is in close contact with Hammersmith.

On the several times I've asked to try out a third generation TKI I was told that the literature keeps getting revised and the treatment goalposts keep changing, so their approach is "wait and see". As regards mutations, I've had the tests and none were detected.

Hi, johnny, how are you? about the mutation test, maybe it's better run another one because you had the test some years ago. about the anxiety i'll recomend you to do some yoga. I'm not a "zen" or "mystical" guy and never believed in yoga, but i gave a try and i'm really liking it. a friend of mine, who is a psychiatrist, told me the yoga has an anxiolytic effect. I'm much more relaxed now and i'm in the first year of treatment with a sub-optimal response (i also had a mutation test and it came negative).

This morning I received a copy of a letter which details my treatment proposals, they are going to apply for 3rd line tki funding and give me Dasatinib in the meantime to see if it will have any benefit. Should the funding not be granted I will undergo the transplant.

Breathing techniques and gentle exercise have really helped me, a friend is into martial arts and gave me a book on the relaxation aspect of the Russian martial art "Systema". It is excellent.