Cml

Hi there, 

I have now been on Imatinib since I was diagnosed with CML Sept 21! 

I really suffered with painful joints and bones as my main side effect but pleased to say that has settled a bit. Weight gain is an issue for me too though. 

I lost a bit of weight just before I was diagnosed. Not enough for me to be concerned and I had been watching my weight so was pleased at the time. 5 months later and I've gained over a stone! I have days when I literally can't curb my appetite but most of the time I'm eating what I was before and still gaining weight. 

Back at work next week after a few weeks off so I'm hoping to try to get motivated and lose a few pounds over the next few weeks to see if I can be done or it is all down to medication side effects! I'm 51 and I know age doesn't help either when trying to lose weight though. 

I try to tell myself that weigh gain is not important in the scheme of things and that the medication is working and making me better but I do get a bit down about it.  Especially as this is not a temporary thing where the weight may come off after treatment! 

Worth talking to your consultant at your next appointment if its making you depressed? But I'm always here if you just want to offload!

Nicola X

Thank you Nicola, it's nice to know I'm not on my own. Before treatment I lost  2 stone I was just under 8 stone which wasn't good. I have always been a steady 10 stone. I'm now 12 stone and still going. I get days were I could eat constantly all day. I am 54 so my age is against me.

I will talk to my consultant next appointment. 

It is great that the medication is working and I should be happy with that, I know I guess not having anyone to talk to doesn't help much. I feel I shouldn't burden my family anymore.

Twitch x

I know what you mean. My family are great but I don't want to keep harping on about my insecurities to them when I know they just worry about me. They think weight gain isn't an issue! 

I'm determined to have a good week food wise and try not to give into my hunger cravings!  I joined slimming world for a while but it just didn't work for me. Will try a low calorie week and see if I can up my exercise. Sometimes that's just too much effort but if i break the cycle it may just do the trick. 

Will let you know how I get on.

Hope you have a good evening Twitch.

Nicola x

Please let me know how u get on.

Good luck with work  

Have a good evening xx

Hi there I'm new to the group I was diagnosed with CML in March and was put on imatinib, since then .I've put on a stone in weight and get so tired I have a big family who at the time was very concerned and upset . I've been OK after the initial shock diagnosis but I do find nearly three months on that I have no one to talk to if I mention CML they just say but you're doing well so I don't talk about it . Is it normal to feel a bit alone with this .

Hi Bonnie, I was diagnosed a year and a half ago, yes I feel so alone still. Its hard to open up to people, like u say u mentioned cml and they say well your doing well. The weight is hard to shift, it's a side effect of the medication, you are supposed to be grateful that your medication is working and nothing else. I mentioned to my consultant about it and was told to talked to my gp, I did this and got a phone call from a nurse telling me what to eat and what not to eat, I didn't find this helpful. I would say it's normal to feel like this. 

Hi Bonnie & Twitch,

Sorry for delayed reply...not enough hours in a day sometimes. 

Totally normal to feel alone when you have no one to talk to about all of this. I've stopped telling people how I really feel as all they see is someone who looks completely fine. 

My weight gain continues after 9 months of being on Imatinib. I don't eat as much as I used to before CML and I've been getting as much exercise as my achey joints and tiredness allows but makes no difference really. It may have slowed a little but I'm now well over a stone heavier than I'd rather be. I'm trying not to let it get me down and see the bigger picture but some days I could cry.  

I'm off to have my bloods done today so I'm going to talk with my consultant again in 3 weeks and see what he recommends. 

Take care both and I'll make more effort to reply sooner next time. 

Nicola X

Hi Twitch and Cornish, 

I 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 like you both my weight 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 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 originally come on on here to see if anyone has any experience or recommendations and came across your posts.

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. 

sam x