Hi everyone,
Thought I'd say hi and see if there is anyone else out there with m.s. And now I've just been diagnosed with cml. Kinda feels like my body is going through it at the moment. And it seems to be a rare thing, of having both of these conditions, as all the cancer specialist consultants that I have seen regarding the cml haven't dealt with anyone with both these conditions before. Makes me feel a bit alone with it all.
I have now started on imatinib a few weeks back. I feel I have been lucky so far with side effects, except for incredibly debilitating bone/muscle pain. Started a week ago but is slowly getting better. But when it started a week ago I felt like I was doing a guessing game of what might be causing the pain. Turns out it is probably due to the imatinib, according to the specialist nurse that I called and she got advice from the consultant. The thing is, because of the m.s., They are not sure. And this is what I'm finding really frustrating. I understand everyone is individual and everyone reacts differently to imatinib. But I hadn't read anywhere bout bone pain when taking imatinb.
It's all very frustrating and wondered if anyone else has similar experiences?
Hi Kitty1175 and welcome to this corner of the Community although I am always sorry to see people join the community………. I am Mike and I help out around our various Blood Cancer groups.
I am especially sorry to hear that you have received your CML diagnosis on top of your MS.
I don’t have Chronic Myeloid Leukaemia (CML) but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well…… although I don’t have MS.
CML is on the rare side, but let’s look for any group members to pick up on your post and get back to you. You can also click on the main ‘CML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a person with CML in it so worth checking.
Always around to help more or just to chat
