Chronic Myeloid Leukemia

Hi there, I’m Pj49 and new to this site.I was diagnosed with Chronic myeloid leukaemia in July and have been on Imatinib since August.
For about the last 6 weeks I have struggled with loss of appetite and also find it harder to cope in stressful situations.Does any one else suffer with these side effects.

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Hi @Pj49 I am so glad that you have found our forum.
I am sorry that you have struggled with a loss of appetite.
I have never dealt with what personally stresses me well since my diagnosis with Chronic lymphocytic leukaemia (CLL) 20 yrs ago.
I think my thoughts and emotions have been on high alert since my diagnosis too.
I attach the Blood Cancer UK information on Chronic myeloid leukaemia
Chronic myeloid leukaemia (CML) | Blood Cancer UK
The Blood Cancer UK telephone support line (opening hours apply) is there on 0808 2080 888
I hope others might be able to share their experiences with you too.
I always think it is worth keeping my medical team aware of my symptoms, their changes, severity and impact on my life, they just might be able help as well.
Please do let us know how you get on and really look after yourself

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Hi Erica,Thanks for your reply and the attachment.

Kind Regards Peter.

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Hello @Pj49 and welcome to our forum :blush:

I’m sorry to hear that you are experiencing a loss of appetite and difficulties in coping in stressful situations. I was diagnosed with chronic myeloid leukaemia almost 12 years ago and whilst I didn’t experience issues with appetite, I can empathise with the psychological side of things. For me personally, it took me a while to wrap my head around my diagnosis… I was all over the place! As @erica says do make your care team aware of any symptoms and difficulties you are noticing. Give yourself time and space, keep talking and above all be kind to yourself. It’s a lot to take in and adjust to. Take care and continue to let us know how you are getting on :blush:

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Thank you MaggieLT for your response,I have made the Care Team aware of my concerns and am finding a lot of snippets on the forum which are useful and its good to know that support is out there,Thanks PJ49.

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It is exactly seven years since I was diagnosed with Chronic myeloid leukaemia and I too am on Imatinib. It did take a while to settle to it and nausea was an issue. I find that a substantial breakfast and big tumbler of water helps with this. A yogourt to finish also helped. My appetite was suppressed but largely because I felt quite weak and eating seemed so tiring. This quickly picked up and by three months I was enjoying my food again. I see that you are improving and I feel sure this will continue.
Funnily enough I did not feel anxious once the diagnosis was made partly because I was sleeping so much and could not work myself up to an emotional state. It was when things were doing really well and I was out and about that I felt lacking in confidence. I remember telling the Forum how I looked forward to buying a few clothes in M & S and when I got into the changing room that I was suddenly weeping copiously and it was all too much for me. The staff member there was fabulous and chatted with me and told me how I could book an M & S shopper just to give me support and there was no pressure to buy. I think we are sometimes are caught out when our emotions burst through but really this is not unexpected. You have come through a lot and there may be hiccups but it will all even out in the end. Take it steady and back off if you are feeling fragile. Most things can wait a while. Ask for a favour, some company when you feel the need for it, a rain check if you need some space to yourself. This anxiety is not the new you. There is plenty of time to seek reassurance and let your confidence grow back.
I wish you the best Christmas and a peaceful and healthy 2014.

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Oh @GrandmaJo what a brilliant, honest, well written post and handy hints too.
So, so true my emotions are often not logical and the tears can come when I least expect it.
How important is it is a good philosophy.
Listen to your body.
We are all here for each other.
Be ever so kind to yourself and I wish you the best Christmas and a peaceful and healthy 2014. xxxxx

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Pj49,
I have been thinking of you and wondering how you are getting on. You have had so much information to take on board and if you are like I was, about three appointments per week to start with. I am hoping that things are settling now and that your blood scores are moving in the right direction.
Take care
Grandma Jo

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Thanks for the email Grandmajo,I hope your keeping well.I am a bit all over the place at the moment,but I have spoken to my haematology nurse today and am being considered for Holistic Treatment which from what I’ve read will almost certainly help.I am on review every 10 weeks at the moment and the last blood count was very encouraging.

Keep warm and well,PJ49.

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Hi @Pj49 I hope you do not mind me asking but what does Holistic Treatment involve?
The system you are on currently sounds like what is called things like ‘watch and wait’ or ‘active monitoring’.
Look after yourself

Hi Erica,The best way I can describe it is looking at the whole picture physically and mentally, because I am struggling more with emotional issues than the illness itself.Keep warm and look after yourself.PJ49.

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Thanks for enlightening me.@Pj49.
I attach a link from the Blood Cancer UK website
Blood cancer: mind and emotions | Blood Cancer UK
I think it is so important to address the mental side as well, it certainly was not looked at when I was diagnosed.
I am also a great one for fresh air and reasonable exercise, I am a walker.
I also do Pilates.
I have noticed on this website that it often does not matter which blood cancer we have we share similar thoughts and feelings.
The Blood Cancer UK support line is also there for you on 0808 2080 888
I look forward to hearing more about you.
Look after and be kind to yourself and please do keep posting.

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Hi @Pj49 - I’m really encouraged to hear that they are taking a holistic approach to your care. I too found the psychological impact challenging and was given access to a counsellor that I could talk to which was really helpful as I got to grips with it all. It takes time but it is so important to have an outlet to express how you are feeling. Of course you have the forum here too :blush:. Take care

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Pj49
I am thinking of you and hoping the odd burst of sunshine is lifting your mood and allowing you to get out and about.

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It is nearly Valentine’s Day and so time to slip a few treats into the shopping. You deserve them.

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Hi Grandmajo,I hope your well and thank you for asking about me.I do what I can but still pretty low at the moment.I am however receiving talking therapy and have another session at the end of February.Blood count next week and maybe a bit of warmer weather soon !!! heres hoping anyway.Take care of yourself PJ49.

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I hope your blood scores were what they are hoping for. Trying to take the long view can help when looking at these. I found each time I got a cold or virus they were all over the place but if I could compare to the past I gradually saw improvements. I remember one time when I had my bloods just before an appointment and I was so proud of my nearly normal neutrophils when the consultant said that I was poorly and the neutrophils would soon drop back down. Of course she was correct. She said they were trying to save me but would not be able to sustain.
I hope that your counselling is helping. Having little pockets of exercise can be so good too. My garden has bright little daffodils in it at the moment and any sunny spell is golden at this time of year.:sunny:

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Hi Grandmajo, Nice to hear from you again.My last review was last week and the scores were where we’d hoped they would be.

Still improving, however the Imatinib has some side effects one of which is anaemia and others include bruising which my hands are covered with…However if the next results are good the consultant hopes to reduce the tablets which should lessen the problems.At least I know why I am constantly tired.The counselling is helping but its all a bit of a vicious circle at the moment and a job to know what are side effects and what are mental issues.But maybe it will all improve soon.

I hope you keep as well as you can and I will let you know how my counselling session goes in10 days time.

Take care PJ49.

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Hi @Pj49 thanks for your update and I found that therapy was definitely not a quick fix but a process.
Yes, please do let us know how your next session goes.
Oh @Pj49 I have a lovely picture in my mind of @GrandmaJo 's wonderful garden.
Really be kind to yourself and I believe in fresh air and appropriate exercise too