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BMS

Hi I have been on BMS since end March, well apart from 3 breaks.
Having lots of side effects, the most problematic at the moment being pain in my feet.
It seems to be some inflammation, it improved with a short course of steroids and then came back. It also improved with a break from the BMS. At present I am on ibuprofen, tramadol and paracetamol, as well as an anti-histamine, calcium and diuretic!
Has anyone else had a similar problem?
The leukaemia is well controlled, it is just the b***** side effects.
I had lots of side effects with the glivec and my consultant is going to see if he can get AMN for me, or maybe I might try interferon.
I am interested to see how other people on BMS are doing.

regards
Susan

Sorry to hear you are still suffering from side effects, it doesn't seem even remotely fair. I am going to be in Hampstead on the 27th if you'd like to meet up.
Be nice to see you
Love David

hi, my sister was diagnosed with CML and she is 31 years old. i do feel really heat broken andsometimes its hard to believe. i found out that life is full of suprises good or bad cuz i never thought it would happen to my family.

these days i hope and pray things get better with her. she is about to start her treatment and in my heart i have faith she will be ok. i need to speak to someone who has had that experience so we can talk about it. please dont hesistate to call me on my number as i never have anytime to be on the internet. 00000000000. my name is susan

Hi
As everyone knows I have been on Glivec since 2000, but have had the advice that it is slowing down in that it will not go any lower with the dose I can tolerate, so BMS at 50mg daily has been suggested so this is what I am going to try, starting next Wednesday following a week off everything. I am told by HH that side effects are similar or less than Glivec apart from an increase in fluid retention, so have to look out for this. You seem to be having a horror story at the moment, is this the 'norm' as it were?. Have medication to take care of fluid,but was told that I could fel 'unwell' initialy,and paracetamol was mentioned as a remedy, have you any knowledgeon this subject please? I do have the option of returning to Glivec should BMS be unsuitable. I really have had quite an easy ride with Glivec over the years, but this somthing new. Any comments or pointers would be of great interest
Thanks
Have fun and keep smiling

Keith

i am sorry to hear your sister has had a diagnosis of leukaemia........ which sort of leukaemia is it? if she has ph+CML then there are very good treatment options. do not depair,
best wishes,
sandy C ;o)

Hi Keith

It is so difficult to comment on the side effects of BMS. I am also under the HH and I think they are fed up hearing about my side effects, however they are also very understanding and really trying to help me with them.
Initially I had a bad headache for a couple of days, then I started retaining fluid, had to stop BMS after 10days for a 2+ week break! I then restarted with a diuretic. I am now having problems with inflamation in my feet, really sore feet first thing in the morning, ok during the morning and gradually getting worse during the day. Steroids really helped but they are not practical. Another break from BMS helped. I have had the dosage reduced from 100mg once a day down to 50mg. I am on a variety of painkillers at the moment whilst we consider the next avenue.
Because all the symptoms are so subjective it is so difficult. I was concerned that I was moaning too much but David Marin has been most understanding and helpful and said that I seem to having more side effects than the rest of the patients. I also had problems with glivec so it is probably me. I am sure that you will be fine. Everybody is so different.
Please feel free to email me susanlynn.leigh@virgin.net if you want more info or to chat about it.
As you say you can always go back to glivec. I hope that it does the trick, I am sure it will.
regards
Susan

Hi David
hope you are having a great time. I am at the HH on 27th November, next time maybe. I would like to catch up with you

Susan

Good Day to everyone
Toady is the end of the first bweek on BMS at 50mg daily, so far I have nothing to report apart from the increased level of fatigue, but that could be down to having been at a Country music Festival for the past 5 days, staying up late andmega amounts of 'mountain dancing' so could be my own fault. Fluid levels seem to be ok, but I am keeping a watchful eye on weight daily. Hammersmith today and blood values were good (for me)so David Marin seemed happy with them, but we do need to see them again in two weeks time.
As an aside, at said festival, again entered the western fast draw competion, but only managed second place this time. Put that down to BMS?. Told this to DM, and explained what it entailed to him, and he dissolved into fits of laughter. At least I made him happy.

Keep smiling

Keith
(henleycowboy)

Hi Keith

I forgot to mention that I was desparately tired for the first couple of weeks. I used to come home from work and go straight to bed. It does get better.
I hope that you do well.
regards
Susan