Hi All,
I’m new on here although joined this forum some time ago but haven’t gotten round to posting anything yet. I was diagnosed with CML in May 2020 (7 wks in to lockdown) completely unexpected.
Started on Imatinib and all things considered I’ve responded well so try not to complain. However the fluid retention and weight gain is really getting me down, I’m now 51 so of that age, however I can easily put on around 2kg of fluid per week. I take furosemide to help with the fluid and it does help a bit, but of late it seems to now be having no impact. When I get up in the morning my face is so puffy and I just don’t recognise myself and it’s really getting to me. I have asked my consultant for a break from meds to see if that would help but they’ve said it’s too soon.
I have heard that Lymphatic drainage massage can sometimes help with fluid but they can be expensive and not sure how effective it would be, so I’m interested to see if anyone has any experience or recommendations of using this treatment or has any other recommendations.
I generally keep well and considering what some people go through I try not to complain but I’m really starting to hate being on the medication and that’s not a good place to be as this is going to be a lifelong treatment.
I have explored other medications with my consultant but he’s said that they all have their side effects and often worse so Imatinib is the best for now.
I gained a lot of weight from antidepressants many years ago so absolutely not going down that route again. I recently started HRT and have actually been feeling a lot better in other ways if I could just get the weight/fluid issues under control.
Any help or guidance would be appreciated x
Hi Martha71 and welcome to this corner of the Community although I am always sorry to see folks joining us. Sorry I missed your post, I am Mike and I help out around our various Blood Cancer groups.
I don’t have CML but I was diagnosed back in 1999 with a rare, incurable but treatable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.
First we do have a dedicated Chronic myeloid leukaemia group so it would be worth joining there and putting up the same post.
I had very bad Fluid Retention during both my Stem Cell Transplants but my clinical team just put me on an IV that basically had my peeing all night, It was akways at night 
I do hope you will get some answers soon.
You could try posting your question to our Cancer Nurse Team in our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Leukaemia Care UK on 08088 010 444 who produce very good information and various support platforms including their Buddy Scheme
Always around to help more or just to chat
