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Dav- low platelets/nilotinib

Hi, your original post about low platelets/nilotinib is still on the forum... about 10 discussion threads down: http://www.cmlsupport.org.uk/node/8318

I am glad your platelets recovered somewhat and you were able to restart nilotinib but should they drop again I am sure a reduction in dose will allow your platelets to stabilize and then you will probably be able to increase your dose to 300 mg x 2 after a while. After all it is early days as you were only diagnosed in February.

It can take time for you body to get used to a particular TKI and for your blood counts to normalise and then stabilize. It would be a shame if you did have to change therapy as you are obviously happy with nilotinib so far, and your doctors will probably be keen to keep you on nilotinib if the possibly can. If you are being treated at a specialist CML centre then they should be used to managing low counts at the start of therapy. Fingers crossed for you.

There are quite a few others on this forum who are taking nilotinib- hopefully they will respond to your request for feedback.

Please keep us updated here- we very rarely delete posts from genuine patients, only spam!

Best wishes and good luck for you blood test tomorrow,

Sandy

Hi Sandy,

Many thanks for your comments and wishes. It is really comforting to hear advice from someone else. I am not at a specialist CML clinic, but I am being treated in a general hospital. The upside is that it is close to me, but the down side is that the doctors do not have a lot of experience with this illness or the medications, so at times I feel a little in the dark.

Anyhow, now I know my message are still surviving I will make more use of this forum. So are you a CML 'patient' or do you partly run this forum?

Thank you once again for your kind reply Sandy.

Hi Dav,(is that the right name?)

I am glad you feel more connected to this forum now. The fact that you are being treated at a general heamatology dept. must be a little disconcerting, however these days most are in touch with CML expert clinicians and probably (hopefully) your doctors will be asking the advice of those expert centres - which one depends on where you are based?

No need to be in the dark now you have connected to this forum- and yes I am a CML patient- diagnosed in 1998. To save boring everyone who already knows my story you can read the background by going to the blogs and journal page where you will find my (and others) caringbridge diary- it will pretty much give you an overview of the history of this site and how it came into being- and yes I run the website/group with input from all the active members who post here- all patients or carers and all very knowledgeable about CML and TKI therapies.

I hope you can find some support here- infact I know you will- and as the weeks/months go by, and you find out more about how you should be monitoring you disease and responding to nilotinib, I am sure you will be able to talk with your doctors with knowledge and understanding about CML and the various TKI therapies that are available to you. The next few weeks will I am sure turn out a positive outcome - you are on the right track and as I said it is early days and you just need to stabilize your blood counts- the rest will hopefully be plain sailing, but if not there are options apart from imatinib- but lets cross that bridge if or when you need to. Meanwhile, keep those platelets up ;o)

Best... Sandy

Hi,

I'm new to this forum but most definitely not new to CML.

I was diagnosed nearly 20 years ago and have been through a roller coaster ride of treatment, emotions and results since then. Thankfully though it's ultimately turned out all good.

I've just posted something you might be interested in:

http://www.cmlsupport.org.uk/node/8326#comment-12559

Hi Sandy,

Firstly apologies for no reply after you took your time to reply to me in detail. I am self-employed so at some stage had to jump back into everything to try and catch up on lost ground. That's where I have been ever since.

Yes I feel a little lost at times, as I have no doctor whom I can speak to face-to-face, (who knows about CML + Tasigna/nilotinib side affects). There is a CML hotline number so I better make use of that and this forum! It is the unknown which poses the problem at times.

I'm happy to say that my blood levels have stabilised for the moment and they have put me back on Tasigna/nilotinib. Everything is going well although the last 3 weeks I have had a lot of stomach problems. Started off feeling like a normal stomach bug, although now it has developed into quite a strong stomach ache which can last 1-2 hours. It always comes on immediately after eating and today I had to lie down for some time. The pain spreads to my back and I caught myself almost feeling a bit sick.

I am guessing this is a side affect. I want to get through this and hopefully my body can learn to better deal with this in the weeks to come! Apologies - it's all about me in this post. I guess you might be use to that with the CML newcomers!

It would be great if there was a system to alert you by email when someone replies to your post. Is that possible at all?

I hope you are well Sandy. Do you suffer side affects at all or is it plain sailing after the initial few months?

Dav