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1st 3 months of imatinib - your experiences?

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Hi everyone I hope you are all doing well, I was dx July this year been on imatinib 400mg since 20/7.
I'm a worrier, overthinker and think I prob do bug people with my need for reassurance for this I'm sorry.
Can I ask anyone on imatinib what issues you had in the 1st few months I'm trying to learn more so in time it can stop me from panicking and help me to get on with my life.
My current bloods today:
WBC increased from 3.8 to 4.3 this is the 1st increase I have had since dx so I got a shock
My neutrophils was 1.4 now 1
Platelets normal
Heamoglobin was 107 now 118
My cml nurse is keeping an eye on my neutrophils but says don't worry, I do have every faith in her and her colleagues i know i am being looked after by a fantastic team, its just when I'm alone I sit and over think (and bug people)
I appreciate you taking the time to read this and would really appreciate any experience of newly dx issues/worries.
Thank you again.
Take care x

Hi Moirah

First of all, don't be sorry for asking questions and never feel like you are bothering people, that would be my first bit of advice. Especially on this forum, that is what we are all here for.

Regarding your bloods, they will probably fluctuate in the first month's as the TKI and your body try to adapt. From my experience I was heavily focused on my PCR dropping, and for the first 2 month it went nowhere, it was at 20.8 and never dropped, I was convinced treatment wasn't working but on month 3 to 4 it dropped to 5.7 and continued on from there.

It is completely natural to think about things and question things. If you are not sure about things in clinic, ask, your team should not mind at all.

Regarding side effects I had swollen knees, headaches, aches and other pains but got by. I was 33 and fit on diagnosis, it is now 2 year on and I am on Bosutinib due to side effects. It is however worth noting that some people have very few issues regarding side effects, that is from what I see on the forum. This is the point, we are all different. Some worry, some don't, some ask questions and some don't bother. I am a bit like you.

Never feel afraid to ask and if your concerned about anything speak to your team. Besides the forum is here for support.

Take care.

John

Hi Moirah,

good to see your haemoglobin is going up... you should feel less tired the higher it goes (check the CML Facts page for normal ranges of all blood counts) . You wbc is well within the normal range so no worries there. In fact from what you say all looks very good. I hope you continue to ask questions here, particularly when you're worried. It is all very confusing when you are first diagnosed but with time you  will get used to it- as far as anyone can.

You might like to take a look at the following video produced by Patient Power. Dr. Susan Leclair is a lab scientist and is pretty good at explaining the functions of cells and the significance of your blood counts. In this clip she focusses on granulocytes - neutrophils being one of them.

http://www.patientpower.info/video/the-significance-of-white-blood-cells...

best wishes,

sandy

 

Bug away all you like.    It's a huge thing getting a cancer diagnosis.   There'll be "stuff" you want to know and better understand.

I saw your post last week but didn't answer it then because you very specifically asked about the 1st 3 months of imatanib.    I wasn't too sure I could remember that well so far back ;)

But I will copy and paste what I wrote on another thread here recently  "I've never had any significant problem whatsoever from side effects of Imatanib.   I've been on it since clinical trial and about 15 years".  

http://www.cmlsupport.org.uk/thread/10685/newly-diagnosed-cml-reposted-o...

Now I'm not sure if time has put a rosey glow on my memory.  Similar to how comes women go on to have a 2nd child ;)      Or if it's "just" because when I was diagnosed over 20 years ago the treatment available then was quite frankly VERY limited and really bloody awful.      There's no doubt in my mind that Imatanib / TKI's are a game changer.     

It's perfectly normal to worry but it's also perfectly normal for the drugs to take a while to have an effect and that all takes time for you to adjust and manage and come to terms with as well.

I know this sounds like a stupid thing to say but I've said it often.   IF I had to choose a cancer to have then it's going to be leukaemia.    It's not just hindsight that makes me say this.   Not "just" the fact that I'm here and well over 20 years since being diagnosed in a critical phase.   At first I said that I regretted the day when I had to REALLY learn about blood and white cells and being nutroplenic and all that stuff.   But then I very quickly moved to saying way back then that "leukaemia was a good one" because I very quickly came to learn that the research work and progress being made with regard to treatment was absolutely awe inspiring.  I just desperately hoped that I might be one of the lucky ones.  

I'm very thankful that I got the timing right and got ill and my diagnosis when I did.   It means I'm here to bug you back.    

With regard to actually being on imatanib.   In truth it's hard for me to know what was the medication and what was because of all the other stuff I'd gone through but I think I've honed it down to  I was at first quite sick and very tired and used to get really awful cramps numerous times every single day and night.    I found it better to take it at night when I was going to bed.  I have a small drink of milk and a biscuit or small jam tart and the "sick and indigestion and tired" was totally managed just with that.    I drink plenty of fluids but specifically I have a lot of tonic water (because it has quinine in it) and started to have isotonic drinks with salts in or eat a handful of salted peanuts each day and a banana (potassium).   That reduced the amount of cramps though never quite erradicated it.     But I'm now on the DESTINY trial and on half dose of imatanib and I've only had 2 cramps in a year :)