Hello everybody starting vidaza on Monday does anybody have any experience of this drug thanks Andrew
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Hi @Andrew2 no, sorry I don’t, but just to let you know I will be thinking of you on Monday.
Look after yourself
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Hi @Andrew2,
Thanks for sharing this. Can i ask, how are you feeling about starting treatment next week?
I’m sure there will be others within the forum who have had experiences of vidaza.
In case it is useful in any way this webpage offers more information around the drug incl side effects & what to expect- Azacitidine | Macmillan Cancer Support.
However also know that you can reach out to your own clinical nurse team at any point prior to starting treatment if you have any additional concerns or questions you would like to run through.
Alternatively our own helpline is always here for you- 0808 2080 888.
Take Care, Lauran
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Thanks lauran im feeling a worried about whats coming if yo took notice of all the side affecteds yo would never take it but im sure things will be ok the chemo tablets are just not working platelets are either very low or very high at the moment 840 2 weeks ago was 16 i let yo know how it goes thanks Andrew
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Hi @Andrew2
Sorry no I don’t share your exact experience, but I did have chemo. I think everyone experiences chemotherapy differently, both physically and emotionally. Each person experiences any side effects differently, and different chemotherapy drugs may cause different side effects.
But fantastically for us as the science of cancer treatment has advanced, so has the science of managing treatment side effects.
My best advice would be don’t ever suffer. My team said always ask ,tell us what you need don’t let things get out of control. It’s always better to stop anything in its tracks than trying to control something once it’s got hold.
I feel like I sailed through mine . I took tonnes of anti sickness I was a walking medicine cabinet. But I’m five years on next week- it was worth every single second.
Will be thinking of you let us know how you are doing.
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Hi jules thanks for the advice much appreciated im sure things will be fine its just a bit daunting ill let yo know how it goes thanks Andrew
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Hi @Andrew2
How did Monday go? Hope you are managing to cope with any side effects.
Hope you have had none but just in case …Just remember nothing lasts forever and you can get through anything.
In yoga I practice a pose called super hero it’s simply a standing pose. On my rough days I would stand in superhero pose saying out loud I am strong , I’ve got this , I can and will do it. Then promptly make myself drink lots of water and go out for a walk even when all I wanted to do was curl up on the sofa.
Walking was a real boost. These three things were my daily chemo coping strategy and I swear by them , water ( lots of) walking (fresh air ) and yoga for mind and body.
Thinking of you.
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Oh @Jules and @Andrew2 I really agree with what @Jules says although I am a Pilates girl, not a Yoga girl. I actually prefer boiling water, I can hug my mug as well, especially in this cold spell.
Take lots of care both of you.
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Hi its going ok not really any side affects at the moment stomach very sore its the travelling thats hard 60 mile round trip taking its toll back Monday for 2 more days then 21 off transplant meeting friday thanks Andrew
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Glad the treatment is going fairly OK, but I know I find all medical appointments exhausting mentally, physically and practically, but a 60 mile round trip must be absolutely exhausting and completely wipe you out…
Please do let us know how the transplant meeting goes Friday.
Be kind to yourself.
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Good to hear from you
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Glad it’s not to awful - I feel your pain of travel. We are currently experiencing a 100 mile round regular trip to visit elderly hospitalised parents. But one is in one hospital and one in another. Nightmare for them and us but we are looking to move them to be near us as soon as they are out.
The travel is exhausting when you are not having chemo so I do feel for you.
Hope transplant meeting goes well:)
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