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Hi all I’m new to this my darling 75 year old mother has been recently diagnosed with cml and has been taking imatinib for about a month now she didn’t feel well before hand but I’ve seen her change for the worse this last week I understand about the side affects and has been having stiffness and aching, headaches, bleeding from her gums whilst sleeping, shortness of breath worse then ever, and extreme bloating and feels really unwell. She also has diabetes has had for a long time but since the medication she has had two hypos within three days her sugar levels are all over the place. So is waking her self up every two hours checking. She cry’s as she feels like a burden. I’ve tried getting in touch with the hospital but out of hours so no luck and her next appointment isn’t till 27th of this month. What should I do and can anyone offer her any words of wisdom to help her and me though this together.

Thanks Mel 

Hi Mel,

That sounds really tough for your mum, and I am sure difficult for you too.

Stiffness and aching are common enough complaints, and in most people do subside after a while. Perhaps it takes our bodies a little while to get used to the medication - I am not sure of the scientific reasons, but these sort of problems do subside in the majority of people. That said, for some people (like me!) they didn't and a change to a different TKI was needed to solve the problem. So persist, but not for too long.

In the first few weeks, through the use of the TKI her body will be breaking down a lot of the disease and this can be rough physically. For example, allopurinol is sometimes given with imatinib in the early days to alleviate urea crystals forming (gout, basically) as a result of all the stuff going on as the TKI attacks the cells.

Does your hospital have an out of hours / non appointment phone number? My hospital gave me a mobile number that I can call if I am having problems, and can chat to a nurse about it. Perhaps you could ring your hospital and ask to speak to a nurse if no appointments are available to see a consultant? They've seen it all when it comes to side effects and are well placed to give you some advice to help your mum manage.

David.

Hi Mel,

Very sorry to hear about your mum.  The first few months can be rough, especially when you have other medical issues.

 

My husband was diagnosed 3 months ago and has had some swelling, which is now normal using Allopurinol.  He has been

quite sick feeling, which is being dealt very well with Metoclopramide.  He is very, very tired to the extreme and we were warned

that this could last up to 3 months because of the initial 'dumping' of the bad cells but it should start to pick up to the 6 month

mark.  So far, it has been very accuate.

 

He is also on Imatinib and our clinical nurse said that with other issues like heart conditions and diabetes, the first few

months can be rough because of the Imatinib kicking in which in turn can haywire everything for a time.

As David mentioned, we have a number we can call if there are any questions, at any time.  You may want to really pursue this

not only for obvious medical reasons but also peace of mind.

 

The more we have delved into this site, the better we are feeling about the whole thing and coming to grasp with it all.  Hang in

there and hopefully on the 27th you will have many questions answered.

 

All the best from Tim and Michelle