Hi been a while since I've posted on here. My daughter now 17 was diagnosed 3 years ago. She's on imatinib 350/400 on alternate days. She isn't always compliant and often misses doses :(
Today she has got pain in her hands and elbows which are both swollen. I've just took her to gp who has took blood and is unsure what it is. Now because she has just transitioned over to adults I'm unsure who to ring as I have not been given any numbers to contact in case she is ill. She is under the QE in Birmingham.
Has anyone got any advice? Is this cml related?
You are here
Swollen joints
You need to contact the Haematology dept. at QE and go from there.
http://www.uhb.nhs.uk/haematology-contact.htm
AS you say your daughter is non-adherent this problem should be investigated just to rule out any related problems with her CML. Surely her GP could get her a urgent consultation with the Haematology unit! You should ask your GP to do this... but if you don't get any help then contact QE yourself. Make sure you have all her hospital numbers etc. before you phone. This must be stressful for you but it is better to be sure that her CML is under control.
Hope this is helpful.
Sandy
Thx Sandy, I rang up the hospital and we have just got home, more puzzled than before! We saw a doctor there, (not our usual one) after looking at her he thinks is arthritis! I don't think so as this only came on overnight! Her arms, above and below her elbow, her underside of her wrists and hands are all painfull and swollen more since this morning. Looks a lot like fluid to me! He has given her steroids and codeine and ran more blood tests. He did say if no better in a couple of days to go back as it needs to be investigated. I explained about her not taking her imatinib and he said that was fine :( I'm annoyed as its not fine.
Thank you :) it's been an ongoing problem for a while now. She has other health issues (cystic fibrosis) that she finds it hard to think about her future. All I can do is support her and pray she doesn't become intolarrant to them. It's been a long battle and I find it difficult when doctors say stupid things like it. Doesn't matter if you miss a dose :(
Clair, I can understand why our are annoyed. The statement he made about it not mattering if you miss a dose may well be true.... but you were not talking about one dose! I am sorry you and your daughter seem to be falling into a gap between paediatric and adult care. It is a problem. You may need to get a little more demanding on her behalf- but I am sure you are doing all you can.
As for a diagnosis of arthritis then he blood tests should confirm or deny that that could be a plausible cause.
Your daughter needs some extra support given she is dealing with cystic fibrosis as well as CML. Teenage cancer trust may be able to help with this... they do provide places where young people can go and talk with others their own age. It helps.
They have a young persons unit at QE...
https://www.teenagecancertrust.org/what-we-do/specialist-services/units/...
Hope you are able to get the results of the blood tests sooner rather than later.
Sandy
Hi sandy, jess has been admitted onto tct ward today as over night she developed petechiae all over her legs as well as high heart rate. Today she has had lots of different tests and just had X-rays on her arms and chest as she is very breathless. They have mentioned that they think her immune system is attacking her but not sure why as they said they don't think it's cml related. Just a waiting now :(
Hi Clair,
I am sorry to hear this.... I hope they can find a reason quickly, you must be very worried. From what you say her symptoms seem like she is suffering an allergic reaction to something- swollen joints/tissues, petechiae, increased heart rate, breathlessness. Could it be a reaction to her TKI? or something else like the steroids they gave her? I hope it resolves quickly- please update when you know.
Sandy
Jess was discharged late Friday evening, wasn't to happy about this as she's still not right. They keep saying that they don't think it's cml related as she has been stable on imatinib for a while. It seems to be a problem having two big health concerns that they don't know how to deal with the other. And the fact that as frustrating as it is the doctors accept jess word when she says she is better, even though she can hardly breathe and sats of 86%! They have said it is autoimmune disease but no reason as to why! Just take steroids and see another specialist on Wednesday.
My concern now is her white blood count was 14.9 on the 13/08 and 20.3 on the 14/08 I know they didn't do the usual bloods that she has to test the cml and this worries me. I though I'd ask on here if I'm overreacting!
Clair,
I can see why you are concerned. I agree that rising wbc should be investigated. Did she see a doctor who is expert in CML? Is there any way you can ask to see the haematologist and ask for an explanation to reassure you that the CML is under control?
Sandy
Thx for your reply Sandy. No we didn't see a CML doctor to be honest we never do! She has appointments tomorrow and Wednesday for chest and autoimmune and has clinic next week for CML. Do you know if there is there a specialist at the QE for CML?
Clair,
Professor Charlie Craddock is the Leukaemia specialist at QE. I think he has now moved over to Acute Leukaemias but his background is definitely in CML. He was my doctor when he was still at HH in London and is a lovely guy. Maybe you could contact him and ask his advice. It is a special case. I assume you will see whoever heads the CML clinic when she goes to the clinic next week. I will contact you privately.
Sandy