Hello all,just had my recent BCR ABL test and it’s on the up, I was diagnosed in December 2017. May was 0.76%, August was 1.92 % , I was on antibiotics so thought this might be the cause of the rise,November is 2.14%.Could this mean I am becoming resistant to Imatinib ,I never miss a dose .I really hope not as I don’t have bad side effects as some of you do .Any thoughts please ,Thank you Denise.
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Am I becoming resistant to Imatinib ?
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Hi Denise
Sorry to hear of your numbers increasing.. I'm so new to learning I can't offer any expertise. I do have a question. What is your Imatinib dosage?
Hi Ray ,400mg, I am wondering if Nimbus2 is right in saying that maybe not all Imatinib might be the same strength as I was doing ok before going on INTRAPHARM Imatinib.
What does your doctor say about this? Maybe it’s time to consider switching TKI?
Hi, she said we will wait until my next test in 3 months ,if still rising she will refer me to another Doctor who is a specialist in another hospital To be honest I would rather go to this hospital ,I was going to ask her if I could be transferred there because it’s a centre of excellence specialising in CML .
Are you following the rules of eating no grapefruit, pomegranate and star fruit? Since your numbers are going up are they going to test you again in 30 days or wait 90 days. Maybe some more communication with your Dr and try to get a 30 day test instead of 90 day. Like I said I'm new to getting educated on CML.
Hi Ray ,yes following rules non of the forbidden fruits ,it's the squished red grapes I am missing the most especially with my Christmas dinner 🍷🍷🍷.I am just waiting for an appointment with a new doctor ,being referred to a CML specialist rather than just a haematologist in my local hospital who really doesn't know much.Should be within a few weeks ,it's a bit scary going to a huge big hospital but hopefully they can get me sorted out .Merry Christmas and Happy New Year ,Denise.
Hi all, just had my appointment with a new consultant in a different hospital .It looks like I am becoming resistant to Imatinib so might soon change to Nilotinib.How are the side effects with this as opposed to Imatinib as I haven't really suffered with any other than fatigue and a bit of a rash at the beginning so I am a bit worried ,don't want to feel sick or have other health issues like some of you have had. Also got to have another dreaded bone marrow biopsy boy I hate those they say it's painless but it's not for me bloody hurts, rather have a baby .Doctor says not to worry about the slight rise in my blood or about changing TKI happens to lots of people but it's easier said than done ,Regards ,Denise.
Hi Denise
Sorry to hear this but glad you are now in the care of an expert team who can deal with this situation effectively. The bone marrow is necessary to see the types of mutation(s) you are getting, which will then enable them to select the most useful TKI. My bone marrow wasn't anything like as sore as you describe - hopefully someone there who has done more of them than your district hospital team will be better at taking the sample with minimal discomfort. There are a lot of people on here who have changed TKI successfully. Keep in touch. Alastair