Philadelphia chromosone

Hi Vicky,
95% of CML patients have the Ph chromosome visible by the usual diagnostic tests. a futher 2.5% (approx) do not show the PH chromosome as such but on testing by pcr they have BCR/abl present... this is the protein that drives the disease and is visible on a molecular level.
Those patients (the remaining 2.5%) who do not have the visible Ph chromosome and do not have evidence of bcr/abl in further tests are said to have Ph negative CML or atypical CML which is a disease that does not respond to the current drugs like imatinib etc. This is because it is thought not to be the same disease.

Hope this helps,
Sandy

Your post from the previous thread.
Dasatanib

Submitted by vickiep on Fri, 2009-01-16 18:24.

I have read all of the above with great interest. I was started on 400mg of Glivec daily some 18months ago, with the doseage increased to 600mg about 6weeks ago as I am failing to reach satisfactory levels. I really cannot cope with the tiredness at all. I work as a classroom assistant, which is a mixture of "running" about like a proverbial, with periods of sitting in a cosy warm classroom where I frequently hear myself snoring!! Once out of school, I do nothing further. I live alone, have always occupied myself with the never-ending DIY and gardening and now do none of these things. I live fairly rurally, don't drive and no longer have the engergy for the hour long bus rides into town.Some days putting a potato into the microwave to cook it for super can seem like a final straw. At my last appointment last week, I discussed with my consultant at Eastbourne that I feel dreadful for feeling that he has given me a life-saving drug, but that I cannot do anything with that life. I am no longer able to join friends in social activities, as having me around is a bit of a burden. Apart from the extreme exhaustion which is mental, physical and emotional, I suffer from cramps which distort my legs from the hip down, severe bone pain, and, although the diarrhoea is very much dependent on diet, the flatulence isuncontrolable!!!!(handy working in school!)
Anyway, he tells me that if the increased dose continues to exacerbate my symptoms, then he will consider changing to Dasatanib in 10 weeks, or if I am still failing to achieve "remission" then he will change it in six months. I did feel very excited by this, until I realised that waiting that long to regain any energy was actually very depressing! I really do wonder now if changing drug is going to do anything at all for the tiredness? I am told all my blood levels are "normal", but will now, thanks to all your great postings, ask exactly what the HG is, but, as far as I asm aware, it is the Glivec itself causing this symptom. I see that this drug can also cause water retention and as Glivec has already caused my face, particularly my eyes, to balloon, I don't know if I could cope with it being any worse!
Sorry this is such a long speil, but I am feeling particularly down at the moment.

Vickie (55)

Hi Vicki, I am so sorry that you are feeling so down and not tolerating Glivec, I was very much the same as you whilst on it as well. I am now on Nilotinib. I would agree with Sandy, you need to make it quite clear to your consultant that you need to switch drugs sooner rather than later. It not just treating the cml, the quality of your life has been severely affected & this isnt acceptable. Although the other drugs do come with different side affects I feal 100% improved, I have my life back, I dont feel tired, have no sickness, cramps awful odeama, upset tum, I am very lucky. I do however have problems with a rash at the moment but am now on steroids for a while. I just feel normal & its a fantastic feeling! Persivear with your consultant as you may need to ask him to apply to the PCT for funding depending on your area, lottery post code.
I wish you all the very best & know that your future can be very much improved.
Ali.