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New to forum- a few q's

Hi there,

I'm new to this forum so thought I'd say hi and thank you for all the helpful comments.

I was diagnosed in Dec 16 as an off chance blood test, I'm 31 years old and always been pretty healthy.

My path hasn't been straightforward re treatment. Started off on imatinib 400mg but experienced nausea and a really terrible rash all over my body. I had to stop this about 6 weeks in and went on steroids, restarted imatinib at a lower dose but the rash came back again.

I was then put on bosutinib and this was ok for a while but in May I had my first BCR ABL result which was only at 54%.  The rash had also come back (slightly different but pretty sore and itchy) so I was quickly changed to Dasatinib . There were talks of a BMT which completely scared me. I had been referred to a dermatologist who prescribed Diprobase and 2 strong steroids which did help clear it up.

I feel pretty well on Dasatinib for the last 5 weeks but my hair has started to fall out and I have a few red dot type areas on my hands and arms/ legs, but around my hairline and neck front and back I am starting to get a sore rash again! I'm a bit concerned I seem to react in this way to the TKI's and I am hoping this rash will eventually go away so I can be placed on one medication for a longer length of time. The Derm did say these types of medications are from the same "family" so could also cause a reaction. I am hoping there's a time limit on it??

I've been in haematological remission more or less since I started TKI treatment which is positive but not achieving any further response is really scary 6 months in (they go on about the milestones don't they). I know I have a 3 way translocation and perhaps this is making me a little resistant to some TKI's? I just wondered if anyone has had a similar experience at all? Also any tips on hair loss? My diet is good but not sure if we can have vitmain/ hair type supplements etc?

Many thanks and sending well wishes to you all.

Sindi x

Hi harsh here,
I diagnosed with cml in blast phase in last week Nov 2016 and started on nilotinib 800mg/day.During the first 2 months I had rashes on my body like leg,around my neck, arms and chestMy hematalogist suggested the rashes were the side effects which is less compared to benefits . Luckily the rashes subsided after 2 months now I am having small pimples in most part of my body including the scalp and some hair loss ,but manageable.My platelets had reached till 48000 and nilotinib was stopped for a week,but again started as i didn't have any fatigue or tiredness .I regained my platelets to 160000 by end of 2nd month and still maintained around that.Now recently I have pain and swelling in my leg.

I think the side effects are part of TKI's.Its duration and effects will be different for diffrent people.I hope your bcr abl count may reduce in next few months ,on this more experienced members of the group May give some advice.
Best wishes on your cml,hope you recover well soon.