Hi Alice thanks for asking, I’m doing ok, had a little wobble the other day but that’s allowed isn’t it, I know people have had CML for years and I take that as a positive. My next appointment is on 25th August, I have got urine test strips and keep doing them👀 I suppose I should stop but can’t help it… anyway they look good and stayed off google… hope you are well … love Chris
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Hi @Chris4pace, I think at least one little wobble is allowed, I am known to have a great big wobble sometimes. You obviously know yourself well. I also think you ought to give yourself a great big pat on the back for staying off google. Please let us know how you get on with your appointment on the 25th.
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I agree with @Erica. We all have wobbles! I’m still working on staying off google so will try and follow in your footsteps @Chris4pace.
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Hi I hope everyone is doing ok, I just thought I would update you on my results from bloods yesterday. The nurse has just rang to say all is absolutely fine, BCR undetectable, my liver function is now normal, they think it may have risen last month due to an infection I had in a wisdom tooth I had removed … so I will be able to get a whole nights sleep tonight after a month of tossing and turning and worrying about every little ache and pain as well as being anxious…
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Great news @Chris4pace, thanks for updating us. I think most of us go through the tossing and turning thing, yes, a good nights sleep sounds good to me. Take care and please keep posting how you are.
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Thanks so much for letting us know @Chris4pace. Get to bed early, enjoy that nights sleep and do something nice this weekend. Waiting and worrying is just exhausting! Take care x
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Hi Caz, sorry I don’t think I ever replied to your post. I’m getting on much better on nilotinib than I did on imatinib. I feel completely normal whereas imatinib gave me a very unsettled stomach half the time and my neutrophils have normalised. I am waiting for the results of my first BCR/ABL test on the new drug, which is obviously the key test, so I’m a bit nervous about that. How are you getting on?
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Hi @Sally, how are you doing this week? When do you receive your results? I hate waiting fir results. Hope you are managing ok x
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Thanks Nichola, I’m doing ok thanks. I am still waiting for my results - now pushed back another week due to my haematologist being on leave next week. It’s frustrating because my blood test was weeks ago and I’m sure they must have the results. Anyway, I feel fine (in fact I have never suffered a single symptom from the CML and only found out about it through a random blood test a year ago for something else - very lucky). Best, Sally
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Oh, @Sally, I know the haematologist is entitled to leave but having your blood tests results pushed back a week is really annoying and takes it emotional toll I find.
As @Erica said, waiting can really take its toll. Its very frustrating and a little unfair. I hate waiting - the worst part for me. I hope you manage to keep your mind occupied for the next few days before you get the results. Be thinking of you. Let us know how you get on x
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Hi sally hope you are well, I’m glad your getting on well with the Nilotinib, I have been absolutely fine on them since Dec 2016 no side effects really, the fasting was a bit hard to get my head around at first but it’s just part of my day now, I always wake up during the night for the loo so I take my tablets which is normally about 3-4am then during the day have lunch and 2 hours after I take the tablets … you will soon get in a routine of what works best for you… hope your BCR/ABL is good… I too was diagnosed from just having my routine bloods done, My bloods normalised 6 months after starting Nilotinib and been in molecular remission for quite a while now…
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Sounds like the medication has worked well for you. That must’ve been a hard routine to get used to, but, I suppose we adjust don’t we and make it work.
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Thanks Chris. It’s good to hear of success stories. I take the drug at 6 am When my alarm goes off and then 6 pm. I try to go back to sleep for a bit after 6am but am not always successful. Perhaps moving this to 4am would work better, as my 6pm slot can interfere with dinner/ drinks. I get my first results on Monday so am a bit on tenterhooks at the moment. My initial response to imatinib was optimal but I couldn’t tolerate the full dose due to my neutrophils dropping too low, and then my disease rate started to increase again which was alarming. I am not entirely sure I’ve had the best advice from my haematologist. I think my diagnosis took way too long and then I persevered with imatinib for too long. Anyway, hopefully I’m on the right track now and my disease rate will be going in the right direction. Best wishes, Sally
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Hi Sally. I just wanted to say that I hope your first results are good, and that you can relax beforehand.
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Be thinking of you on Monday X
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Hi Sally, please let us know how you get on Monday. Take care.
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Hi Sally Hope your results are good tomorrow, try and stay positive… hope everyone is doing ok,
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Thank you all for your support and good wishes. My results were good - my neutrophils and haemoglobin are stable albeit slightly below normal. And my disease rate is down form 13% at beginning of July to 5% (after a month of being on nilotinib) so it’s definitely going in the right direction. I feel really well on nilotinib and also don’t have any other symptoms. My next tests are mid-October, so hopefully the disease rate will be down further. It’s a shame that the infection rates for Covid are increasing, as that is of course another worry…
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Hi @Sally, yes, good news and please keep letting us know how you are.
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