CML recent diagnosis and weight

Hello all,
I’ve recently been diagnosed with CML, aged 48 (just at the start of lockdown!) I’ve been on Imatinib since then but I’m not reacting well to it and next week my I will see my consultant who will assess me again with a view to putting me on Nilotinib. My question is about weight - I’ve put on half a stone which I want to now lose - any advice?
Many thanks
Caz

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Hi @CazE, a great big welcome to our forum. What a time to get your diagnosis at the start of lockdown, a double shock. You say you have put on half a stone, I cannot say if it is down to your treatment or being in lockdown. Perhaps when we all get out for some fresh air and exercise, like walking, and being able to go and buy decent fresh vegetables and fruit we will all lose the weight we have put on. We are here to support you and you can also contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk. Please let us know how you get on next week with your consultant

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@CazE Welcome to the group, and I hope you find it useful and supportive. I found that my weight yo yoed while on treatment, partly due to being on steroids much of the time. Many people have the opposite problem, of losing too much weight.
During lockdown there is the added problem of perhaps not being as active as usual, and maybe snacking more. Really it is down to the usual advice of trying to eat a healthy diet as much as possible, although when taste buds are affected perhaps it is not so easy. Be kind to yourself.
@Erica has also given good advice. I hope your consultant is able to help as regards a change in medication. Let us know how you get on

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@Pisces56 and @Erica thanks both! I think it was the medication due to my gain I’ll also speak to my consultant. Yes it was a shock in diagnosis but I also kind of expected it too, however I still think ‘really?’ just because I didn’t imagine I’d get anything like this. I’m very blessed though with lots of support and thanks both for your helpful comments. :slight_smile:

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So pleased you are getting lots of support. I just used to remind myself that the medication and weight gain was a small price to pay to be well again

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@CazE Hi Caz, how are you? We’re so pleased to have you join us within the online community, a very warm welcome to the forum family! :smiley:

@Erica and @Pisces56 thank you so much for being so supportive.

@CazE I was so sorry to read your message, I can only imagine how difficult this is likely to have been, not only to have been diagnosed but at a time like this too. But it’s so very encouraging you have a lot of support and that you have found us!

Caz, I thought you may find this link here helpful: https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/imatinib
This is an advice page from Macmillan Cancer Support which talks through various things in relation to Imatinib, this includes how weight gain can occur whilst taking it. I hope this is helpful to you Caz.

You are all absolutely right, @CazE we would encourage you to talk this through with your treatment team, who are in a really good position to provide specific advice in the context of your individual circumstances. Has there been a lot of opportunity to talk to them ever since your diagnosis?

I hope this helps Caz, do you have any other questions about this?

Please do keep reaching out,

Su

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Hi @CazE,

I would also like to add my welcome to the forum. You’ll find a very supportive group here where you can ask questions and share concerns in a safe and non judgemental environment. I know I have had great support and advice from everyone here since I joined the forum.

I also gained weight following my initial diagnosis with MDS again probably due to steroid treatment. I found a really good NHS weight loss app which was a great help. Using this I managed to lose the extra weight in 6 months and have managed to keep this weight off for over two years. You can find details at:

All the best, Peter

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@SuBloodcancerUK thanks Su for the lovely welcome! I’m generally okay thanks - grateful for drugs and NHS and I have a nurse as well as consultant and my family and workplace have been amazing. Thanks for the link re: weight gain I’ll have a read :slight_smile: I also want to get back into running as soon as I have enough energy and when I do I’ll raise a bit of money for the charity which I think is great for such a wide community - thanks to the team for providing this support too! Take care, C

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Thanks @Dyslexicprof so much appreciated, I’ll check the link you’ve sent out and thank you too for the warm welcome! :slight_smile:

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@Dyslexicprof Thank you so much for sharing this Peter, and what kind and reassuring words too :smiley: How have you been?

@CazE No problem at all Caz! Hope the link will be helpful to you and do let us know if there is anything else you want to talk through :slight_smile: It was so lovely to read about the wonderful support you have from your medical team, as well as from your workplace and your loved ones. I can only imagine what a difference this must make. And that’s so incredibly generous that you are considering fundraising for us once you are able to get back into running- thank you so much! Though Caz, I can imagine it must be tricky trying to cope with not having a lot of energy? do you find anything helps you with this?

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Hi @CazE, it sounds as if you enjoyed your running and that was a lovely offer to raise money for Blood Cancer UK. The main thing is to look after yourself first and then perhaps the running will come. It will be interesting to hear what your consultant says next week about your medication, weight gain, energy levels and exercise.

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Thanks Su. I’m good, although glad to be finished another busy week. Hopefully things will quieten down a bit next week.

I hope you are keeping well too.

All the best, Peter

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@Dyslexicprof that’s really good to hear Peter :slight_smile: we’re all fine thank you! thank you so much again for your wonderful support to our forum family :+1: Make sure you take it easy this weekend :blush:

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Thanks @SuBloodcancerUK :slight_smile: my energy levels have been really low but I’m hoping in time that I will be able to run a 5k again. As my consultant will move me to Nilotinib (hopefully on Tuesday) I’ll see how I go and will only start running again when I feel up to it. I just feel very glad to have had support - I’ve been to see the consultant at my hospital each 2 weeks since lockdown and felt so safe and well looked after. At my diagnosis appointment I was given lots of printed information, one of the most useful things was your Blood Cancer booklet on CML which my daughter also downloaded and read all through, your charity does a great job #grateful - hope you have a lovely weekend, C

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Hi there, I was diagnosed with advanced CML and found a friend from the golf club had also been diagnosed about 8 years before me , she was caught with it at an early stage. I am on Imatinib and it suited me from the start. She was put on three different chemo drugs before she found her ‘happy chemo’. I was totally exhausted in the early months sleeping about ten hours per night and another three hours each day. She was the same but recovered a bit quicker. She is now about 11 years since diagnosis and I am just over three years. I was a very lucky girl, the hospital was great but the support she gave me was wonderful, emails and phone calls that lifted my spirits. I did gain a little weight but it was mainly that I felt unfit. My normal week involved child care for grandchildren under five and three games of golf per week. These were not possible. I found my way through this by joining a lovely gym and started to walk on the uphill treadmill and then having a swim. It was for short time slots initially until I worked up to a couple of miles on the treadmill and swimming a kilometre. This took about six months to achieve. My issues were in catching every bug going, I probably had six the first winter and four the next. My friend did not have this.What I would say is that a gentle exercise regime which you can measure does help you feel like you are achieving, in fitness terms. When you feel weary your brain can tell you that your body needs food to feel stronger. Know what you have eaten and whether this is real hunger or just that your body is a bit out of sorts and trying to solve this for you by telling you that you are hungry when you are really just a bit weak. I found that a rest and cup of tea at the end of the afternoon helped me reach the end of the day well. Treat yourself with your favourite fruits when you feel hungry. There may be set backs like me or you may be healthy through it, like my friend. It is a journey though and we are both now happy healthy ladies and probably stronger mentally.

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Welcome to the forum Jo, and thank you for your very useful advice. I’m sure that not only the people with CML on Imatinib will find this post helpful, but also many of us who struggle with fatigue. I hope you stay bug free this winter.

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@CazE Thank you Caz, hope you’re having a lovely weekend too? :smiley:
Of course, it’s so important to only do it when you feel ready and that put yourself first, it was so lovely to read how supported and looked after you feel. And I’m so pleased to hear you found our booklet helpful!
Hope your daughter is also doing okay?

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@GrandmaJo A big warm welcome to you! :smiley: We are so happy to have you join the forum family. I hope you and your friend are doing okay?

And I echo @Pisces56 I have no doubt your post will be such a helpful and reassuring to so many people within our online community , including people affected by CML and other types of blood cancer too. Thank you so much again for taking the time to write this.

As you touch on @GrandmaJo, everyone’s experience can differ, no two people affected by the same type of bod cancer will be exactly the same, but one thing is that is for sure, is the value of support. As you say, it’s only natural for there to be good and bad days, and that’s okay, it’s just knowing that there will always be support out there- including our forum! :slight_smile: :+1:

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Hi @GrandmaJo, a great big welcome to our forum and it is interesting to hear your experiences. I am also a lucky girl and agree that some exercise and watching what I eat and the odd treat. Yes my body can always tell me to have chocolate when I know I am not actually hungry. I choose not to do evenings, but I am a lady that lunches (pre Covid-19). I hope you can see your grandchildren properly soon. Take care and keep posting.

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Thanks @GrandmaJo that’s really useful. I’ve had fatigue and I’m hopeful I’ll learn to manage it in time - useful to know everyone is a little different with regards to exercise, chemo etc. Take care and thanks so much for your reply :slight_smile:

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