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Any advice welcome

Hi all,

I was wondering if anyone had any experience of anything similar to what I’m dealing with at the moment?

I was diagnosed in June this year and put on Imatinib, and it had an immediate impact on my wellbeing. My PCR results highlighted slower than ideal progress however and at 3 months I was at 26% where I was changed over to Nilotinib 400mg twice a day.

Just over three weeks later I was taken off all treatment due to low platelets as they had dropped to 34. No treatment at all and they continued to drop to 21 after seven days. Four days after that they were 22 and today, which is another four days and over two weeks off treatment they are still only 27 so I’ve been advised to get another blood test on Monday.

I also had another PCR result which was from just before I started on Nilotinib which was 20% at four months and I’m due a further one any day to show how the Nilotinib has worked whilst I was taking it.

Finally in addition my hb was as low as 8.6 at diagnosis, had a high of 14.7 on imatinib and has continually dropped since starting Nilotinib and today’s result is lower again at 12.4.

Up to now I’ve been very positive about the whole thing, even through diagnosis, but now I’m feeling like I’m having my first real tough period. Not like everything is a castastrophe but like it’s becoming a real grind. 

If anyone has had similar, or any hints and tips I’d be very grateful to hear your thoughts.

David - There's someone on the US forum who has battled extremely low platelets.  She is enrolled in a clinical trial for something that helps increase them, I think.  She's also been 6 years on bosulif, because of the platelet problem.  Are you on that other forum, the LLS one?  Her name is Melanie.

Hi Kat, I’m UK based so i’m not on the US forum. Is it a place they welcome worldwide members like here? I’d be very interested to hear how she’s got on. Thanks

Yes, you'd be quite welcome across the pond!  It's lls.org and then you find the CML forum and go from there to register.  Tell Melanie Kat sent you!  I think she has done very well, CML-wise, and I believe she was a slow responder, but I'm not sure and probably shouldn't speak for her.  Once you're registered you can click on her name and read her story.  At any rate, someone will speak up, for sure, and give you some specific encouragement.  Generally, I can tell you that our roads are filled with these various blocks like the one you're encountering, and it never seems to be simple. The good news is, though, that there are lots of options at every point, and most people are able to find a way through or around the obstacle.  You have great resources on this forum as well - David, Sandy, Alistair.  The UK organization's materials are really first-rate. 

One last thought - I hope you are seeing a true CML specialist at a very good center?  No slam on community docs, but TKIs are still kind of new, CML is rare, and changes to clinical practice are coming out fast - best to find someone who is completely up to speed on CML, specifically. 

I’ve had problems with low thrombocytes. Dx in jan, put on Imatinib, platlets at 134. Platlets dropped to 28 in just over three weeks. Paus imatinib for two weeks, platlets were 22 at lowest.

I was told this is not necessarily a bad thing. Maybe you are reacting very well to Nilotinib and the CML cells are disappearing faster than your body can produce new normal ones. 

I continued Imatinib, had another 1 week break about 5 months in but platlets are now around 120. PCR was a little above optimal at 3 and 6 months but are ok now.

Kat - I will have a look at the forum in the US as well, thanks for the info. I knew the road would be a rocky one and so far I’ve stayed positive throughout even with less than ideal results. This little patch is a bit wearing though and I’m having to grit my teeth to get through it. On the plus side, over two weeks off treatment and my afternoon/early evening bouts of fatigue have disappeared! That will be interesting to see if they come back when I do start treatment again.

Your advice about finding a CML specialist is a great suggestion although I don’t think I need to look much further than where I am at the moment. I’m under a consultant at Macmillan who has several CML patients with various different treatment requirements. He also frequently consults with his colleagues at The Christie which is a well known and leading cancer centre in the UK as it’s just down the road from me. I’m very lucky to be right in the middle of two great treatment facilities who work together. Still, gaining your own knowledge on the disease is essential and why it’s fantastic I found this community.

Hi Poppert, thanks for your story. It’s very encouraging to hear when someone has been through something similar and there is a positive outcome.

I suppose that does make sense that the new drug could have worked very well so that’s what I’m obviously now hoping for. They delay in waiting for the PCR results doesn’t help but that’s just the nature of the test I suppose. If I could see the numbers dropped significantly along with my platelets etc then I’d be far more comfortable. I was started on a high dose of Nilotinib at 400mg twice per day instead of the usual 300mg and I was told this was normal if you showed a resistance to Imatinib. When I do resume treatment it will be the standard 300mg twice a day which will hopefully be better.