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change to dasatinib?

Hi, I haven't posted for ages. All going well with me - still undetectable - so Glivec is working fine. My problem is tiredness. I feel that this has got worse and am certainly finding my job as a teacher increasingly draining and everything I do seems to wear me out. I feel that it is taking me a long time to recover every time I get tired, too long. Sometimes I don't "pick up" for days or even a week or two at a time. I have decided that I cannot carry on teaching despite now only working 4 days a week. I am 53 and in excellent health.
My consultant thinks my stable Hbs of 10-10.5 are not sufficient reason for the fatigue I'm experiencing and we think that Glivec may be the cause. He suggests that I try Dasatinib, (assuming that my PCT will fund it, of course).
I wondered whether anyone has been down this road before me? i.e. moved from Glivec to Dasatinib to alleviate side-effects. Would I risk getting other side effects, maybe less bearable ones? I am pretty tolerant of Glivec otherwise. I would always be able to resume Glivec if the experiment didn't work so maybe I should not be worried and I suppose I'm not. But I would appreciate any thoughts you may have. Do you think Mid-Essex will even fund the Dasatinib? I read that the dose is different and am I right that the drug is taken differently?
Over the last 4.5 years I have been a regular reader here and have really appreciated all the hard work behind the scenes - Thanks!

Sue

Hi Sue. My husband Brian changed from Glivec after 9 months to Dasatanib because of intolerance. Dasatanib is great and although there are side effects such as tiredness, upset stomach etc the symptoms seem to be far less. Brian takes two pills at breakfast.
Do hope you get funding. We live in Scotland but I am from Essex and still have family there.
All the best.
Chris

Hi Sue,
your doctor should be able to tell you if you are likely to have problems with funding. There are several PCT's that take a negative attitude but it is difficult to find out exactly how many there are. If you do find you have a problem then let us know and we can advise you. There are ways you can fight negative funding decisions, but lets hope you do not have a problem should you decide to change.
However, I must say that in my opinion an HGB of 10-10.5 is not ideal. I found that when I was on Glivec my HGB was always at that level and I was always tired. I suppose therefore that your doctor is right... Glivec can supress the red cell population and therefore it affects your HGB so Glivec is probably the cause. Dasatinib also has tiredness as one of the side effects as Chris has said in her post and Keith has talked about too. So it may not be worth changing drugs given that you say you find Glivec works fine for you.
best wishes,
Sandy

Thanks Chris and Sandy. I will let you know how it goes with the pct. I am going to give it a go, if possible, in the hope that my individual response to dasatinib is favourable. These side-effects appear to be quite variable between individuals and I'm hoping that, like Brian, I may find them less with the alternative drug. I can't believe that years of low Hb are good for a body and maybe the longer term effect is significant. After all an Hb of 10 or so would be considered a medical issue under "normal" circumstances. I have been given treatment for anaemia when my Hb of over 11 was picked up when giving blood several years ago. I'll get back to good old glivec if dasatinib doesn't seem to help.
Sue

Sue
Just adding here that I too have Hb around 10 since diagnosis over 4 years ago(400mg glivec ever since). Recently I have found that I have been getting very tired - more so than in the early days - I could almost fall asleep mid-conversation late in the evening. We have a demanding lifestyle which does not help - I am a mum running around after 4 children and my husband works long hours. I sympathise with your view that Hb at these levels maybe takes its toll over time. I have no plans to shift drug as I had a lot of problems initially with low counts on glivec and am happy enough to live with tiredness - for me it seems quite sensitive to the amount of sleep I have and even half an hour difference in sleep per night can have a big impact on tiredness levels, so I really just need the discipline of going to bed half an hour earlier but that never quite seems to happen.....
Hope the shift to dasatinib works well for you - do let us know how you get on.
Annie

Hi Sue
Interesting to read all of the above. My Hb dropped from 11.7 to 10.5 once I changed from Glivec to Dasatinib, which I put down to the tiredness that often occurs. The upside is that Dasatinib has taken over where Glivec stopped, and also seems to be less hard on platlets. When tiredness rears it's head, a quiet 10 minutes with a strong cup of tea usually does the trick (2 spoons of raw cane sugar) then it is up and running as if nothing has happened. Perhaps I think too laterally, or just plain crackers, but it works for me. Would interested to see how others deal with this slight problem.
Have fun and keep smiling
Keith

from reading the obove posts i have quite a lot of tiredness as well. At the moment my hb is 8.9 after my blood test today and i can harly play football for an hour with out feeling really tired. All my mates went swimming 2night but i couldn't be bothered because i didnt feel up to it. Its a good job you dont have to move around much using a computer.

best wishes to everyone

Rio ( 14 yrs )

I just wanted to throw in my experience.

I was on Gleevec 800mg and due to extreme side effects (even though I was having a great response), we switched to Sprycel. I take 100mg daily. I must say that although I still have some of the old symptoms they are MUCH more tolerable and nowhere to the measure they were while on Gleevec. Even my labs that used to be low, are now much closer to normal (low) limits. I still have fatigue and tiredness but no where to the degree of Gleevec. Sprycel is a much more easier drug to take, for me, then Gleevec was. You can take it on an empty stomach too. Which was a big change for me. I pop them in as I climb into bed at night and dont have a second thought about it.

Best wishes to all-
Jennifer 35
CML 5/13/05
Wife and mother of 3

i am interested to read about the tiredness. My son seems to be getting tireder ( is that english) as time goes on rather than being more energetic. He takes 400mg Glivec per day. His Hb also seems to hover around 10 which the doctors say is OK. He is having a bone marrow biopsy (check up) on monday so we will see what the doctors say then. As his tiredness has increased so to have some negative thoughtsand he due to see a psychologist later this week. Has anyone got any suggestions of what to say to him (he's 11) i keep telling him he can't leave me to cope with his teenage sister on my own, basically because i don't know what else to say.

Julie,
Please email me directly as some of these issues are the same as my 12 year old's.
Trish. patriciaormrod@hotmail.com

My husband changed to dasatanib in Oct 07 due to rising PCR counts. He is 43 and always tired these days but he works physically hard installing double glazing alone. Apart from this, he has had no adverse reactions or side effects, ie/ no cramps, bloating from water retention or muscle pains. Within 3 months, his PCR count had already dropped significantly and we are due back in manchester tomorrow for an update. RACHEL

Hi Julie,
Have you thought about asking Michelle about dasatinib? Looking at recent posts on the forum, it seems as tho some people have fewer side effects on dasatinib. I know there is a dasatinib trial for children being run from B/ham. Hb of 10 might be OK to doctors, but its lousy for an 11 yr old who wants to be active!
lots of love, kestrel xx

I'm really grateful for all the comments here and above about the side effects of Glivec and Dasatinib. They are going to be a great help to me in making the decision to change, if only temporarily. I feel justified in carrying out my own little trial! Good wishes to all of you.
Sue

For all of us pcr fans here's a song-
go to: pcrsong.notlong.com
It is an ad for biorad who manufacture pcr equipment.
Sue

Tell him a cure is just around the corner......
And hug him tight from me xxxx
Donna x

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)