Hi all …recently diagnosed with CML started on Imatinib….I’m having terrible whole
Body pain. Originally prior to diagnosis I was experiencing pain in rib cage. Yesterday went to shops and took dog a walk …felt so tired and every bit of my body hurt.
They say bone pain doesn’t happen usually in CML but I’m really suffering don’t know what else it would be ? Codeine helps but once wears off comes back
2 Likes
Dear @Beagle
So sorry to hear that you are experiencing such significant pain. May I ask if you have spoken to your Consultant or Clinical Nurse Specialist about these symptoms? I would recommend this if you have not already done so. As you can read here Imatinib (Glivec) | Cancer information | Cancer Research UK, muscle and joint pain is under common side effects so should be addressed. It may be that you pain control needs some attention by the team. Are you taking the codeine regularly? If so, you do need to make sure the side effects from this pain relief do not become a problem so do please mention this to your treatment team.
Do get in touch if you would like to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
2 Likes
Hi @Beagle your whole body pain sounds really horrible.
What is your medical team saying, I always believe in keeping them informed and the severity and impact on your life of your symptoms.
@GemmaBloodCancerUK has given you a brilliant response.
Really look after yourself and be very kind to yourself and let us know how you get on xx
1 Like
I’ve haven’t told the nurses don’t want to bother them…I’m sure I will get used it to …just feeling rough at moment 
1 Like
Dear @Beagle that is what the nurses are there for and they might be able to help you.
When I think that I will get used to something then it is not till it goes away that i realise how bad it was. trust me I have recently had a fall and my arm is a trifle bruised, painful and not much use.
What have you got to lose, really look after yourself xxxx
2 Likes
I will call them …but concerned as temp is 37.5 ….they said is 38 to go straight an and e …going to keep eye on it
2 Likes
Dear @Beagle
Please do call your Nurses as they will want you to (take it from me). Your temperature is still ok but do please keep an eye on it. Do you have an out of hours number for Haematology that you can call if it does go over 38 degrees?
Take care and do call if you need,
Gemma
2 Likes
Don’t suffer in silence! I am on treatment for Chronic lymphocytic leukaemia (CLL) and have exactly the same issue - my whole body feels like a massively painful bruise! I too am on 8 x 30/500 co-codamol tablets a day, but the pain was still unbearable, so they experimented with morphine tablets, which, whilst they controlled the pain better, gave me horrendous nightmares, so now I take 40ml of morphine sulphate (Oramorph) and I am really happy with this combination. I am still in terrible pain in the morning until the effects of the meds kick in, but can at least function once they do! Speak with your CNS and they will sort you out 
1 Like
I really thought it was all
In my head the whole
Body pain is what is getting me down it’s making me feel so ill…
I ended up at a and e last night my temp went to 38.2 …gave me iv abx and fluids and sent me home with oral abx …all I have done today is sleep …
I just keep beating myself up thinking it’s a good having CML you shouldn’t have any symptoms…been crying most of day cos I feel so rubbish
I am taking paracetamol and 60mg of codeine it helps but then once wears off I’m back to square one …
I need to ring my gp for more codeine tomorrow and they don’t prescribe codeine unless you’re dying …I just cant cope with this pain at minute…I know if it’s side effect I’ll get used to it and will ease I just need to get to that point x
1 Like
Oh @Beagle it must be so miserable for you, please make sure you really do impress on your GP exactly what you have said to us. Don’t hold back.
Remember @GemmaBloodCancerUK advice too.
Please do let us know how you get on.
Take lots of care of yourselfxxxxx
2 Likes
Hello @Beagle, so sorry to hear that you’ve such a tough time, you must be exhausted. Very pleased that you have antibiotics now and it may be that once this infective process is over that you will feel much better.
May I ask whether you have informed you Haematology team about your time in hospital? If you have not I would urge you to do so as it is important for them to know your clinical status. I would also ask them about your pain management if this is a challenge with your GP, I would suggest that they should take some responsibility around your side effects.
Codeine is not prescribed and dispensed for long periods of time due to it’s side effects. I would suggest that your Haematology team could suggest options and then relay this to your GP.
Wishing you better and take care,
Gemma
2 Likes
You could ask your team/gp for a referral to palliative care to assess your pain and medication
They aren’t just for end of life they can help live with the pain of cancer
I would be contacting haematology to update them
2 Likes
I had a review with consultant on Monday and high temps are due to my body antiflammaotry response but omg do I feel rough …he has reassured me that pain with ease and give me oramorph to help …
He’s happy my white cells are coming down and says I’m on right treatment …more bloods in 2 weeks x
1 Like
Hi @Beagle I am so sorry you are feeling so rough, it must be horrible and so debilitating for you.
I hope Oramorph will help.
I am glad that you are being closely monitored and more bloods in 2 weeks.
Please don’t hold back saying how rough you are feeling.
Be ever so kind to yourself and please keep posting, you can really say how it is for you on here. xx
Hi all oramorph really helped with pain which is now easing …I still suffer with bone and joint pain but not as intense …still remain really tired …
I have just had bloods Friday and nurse informed me that white cells are 3.53 ……it was 31 two weeks ago …started at 75 on diagnosis…I’m really confused does this sound like a big drop in two weeks? I daren’t ring back and ask don’t want to sound stupid ….
I’m collecting my next meds tomorrow may ask again what my bloods are
1 Like
Hi @Beagle, thank you for sharing and we do hope you’re doing okay. Please know that none of this sounds stupid at all, and any questions you have are valid and important to ask. It’s likely your team have been asked about any number of things before and it’s worth talking things through with them if you feel like you can, so they can shed light on your results for you. Take care and do remember our Support Team are here for you if you wish to talk things over (Blood cancer information and support by phone and email | Blood Cancer UK).
Best wishes,
Tanya.
2 Likes
Hey @Beagle I do not think any questions are stupid, we have been thrust into this foreign world of gobble de gook medical speak.
You have got this opportunity tomorrow to ask what your bloods are, what do they mean and does this seem a big drop in 2 weeks etc. I say go for it, what is the worst that can happen. It might be useful to have a pen and paper in case you need to take notes.
Look after yourself and @TanyaBloodCancerUK has given you the Blood Cancer UK support line details if you would like to talk to someone
1 Like