Hi - I have Acute Myeloid Leukaemia - first treatment of Venetoclax and Asacytdine got me full remission to have a rare cancer tumour removed - however after treatment Acute Myeloid Leukaemia returned with a different mutation and this time same treatment but no remission. My choice is to make the most of remaining months or gor for full blast chemo (Cytabarine) - I would love to hear from anybody who had this dilemna or has recently had the full blast Chemo - I am 71
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Oh @RuaLima5 I cannot imagine the rollercoaster of emotions you must have gone through since your diagnosis and the dilemma you now find yourself in.
I am so glad that you have found us and if you would like to talk to the Blood Cancer UK support line is there for you and if you would like to use us as a sounding board please do and whatever you decide we are here for you to say how it really is for you.
I hope someone will be able to share their experiences with you and I will also copy your post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses.
I certainly do not envy you unknown dilemma
Please keep posting and really look after yourself.
Hi @RuaLima5,
Thank you for sharing this and i am so sorry to hear of your relapse.
May i ask how you are coping? It sounds like you have been given a really difficult decision to make and please do know that if you think it might help, our support service team are always on hand for you- 0808 2080 888.
It might be helpful under your circumstances to know that we do have a clinical trials team here within out organisation who may be able to help you explore other avenues of treatments.
May I ask- Have you had a conversation with your haematology team at all about clinical trials? If not, this may be something you wish to talk to them about.
This webpage below explains more about our team and clinical trials in general- Clinical trials | Blood Cancer UK
You can make contact with our brilliant clinical trails nurse advisors via this link- Blood Cancer UK clinical trial referral | Blood Cancer UK
Again please do know we are very much here for you.
Take Care, Lauran
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Lauran
Thanks for your response. Currently I have opted for Assisted Therapies rather than full Cytabarine Chemo.
I have been pressing for Drug Trials and I am prepared to travel anywhere. The Haematolgy doctors consider my previous surgery for Pseudomyxoma Peritoneum
Chris Robinson
+44 (0)131 283 0605
+44 (0)7843269075
Chris@chrysalisscotland.co.uk
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Lauran
I am in good shape at the moment and would appreciate contact from your blood trials tea
Chris
Chris Robinson
+44 (0)131 283 0605
+44 (0)7843269075
Chris@chrysalisscotland.co.uk
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Hi @RuaLima5 ,
Thanks for coming back to us & I am pleased to hear that you are keeping well just now.
I think it would be really good to have a discussion with our trials team so if you can please complete this contact form which means they will promptly receive your enquiry and will be in touch with you as the new week begins- Blood Cancer UK clinical trial referral | Blood Cancer UK.
I also will let them know to look out for your incoming referral form. However any problems at all in completing this form do contact our team on 0808 2080 888- we are open 7 days Chris and would be more than happy & support you in any which way we can.
Take Care, Lauran
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Hi RuaLima5
firstly, love and light to you from a fellow sufferer.
I love the courage and honesty of your question.
I had Acute Myeloid Leukaemia in 2018 (heavy Chemo followed by Stem Cell transplant) then relapsed in 2021 with full body sepsis and ALL.
I opted for the long painful route - full blast Chemo with Cytarabine (followed by a second Stem Cell transplant).
But my choice was based on my desease, age, fitness and medical history and precise circumstances - your choice will, I guess, be guided by similar factors.
The full Chemo route is not easy. So all depends on your own assessment of probabilities of success for you…
Sending you big hugs and, importantly, lots and lots of luck for your choice and for the future
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Hi @RuaLima5 that must be so difficult and not a decision anyone wants to make. I hope you can find a way forward that brings you some comfort and relief and will be thinking of you. Let us know how you get on.
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Hi @RuaLima5 I have been thinking of you, how are you doing now?
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Erica
My white cells are now rising and I am beginning to feel a bit poorly
Chris Robinson
+44 (0)131 283 0605
+44 (0)7843269075
Chris@chrysalisscotland.co.uk
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Hello @RuaLima5
Sorry to read that you are beginning to feel poorly.
I hope you feel able to contact your medical team for help with any symptoms you are experiencing. Are you having regular follow up appointments?
Please do contact us for support and advice if you wish.
Take things steady and be kind to yourself.
Best wishes,
Heidi.
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Hi @RuaLima5 so sorry to hear that your white cells are now rising and that you are beginning to feel a bit poorly.
What is a bit poorly like for you?
@Heidi_BloodCancerUK has given you a great response that I will not repeat.
We are here for you so you can tell us how it really is for you and if you would like to talk to someone the Blood Cancer UK support line is there for you.
Yes, as @Heidi_BloodCancerUK says be kind to yourself
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Hope things improve for you @RuaLima5 . Let us know how things go.
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Not going to be any improvement- just make most of remaining weeks- thank for your concern
Chris Robinson
+44 (0)131 283 0605
+44 (0)7843269075
Chris@chrysalisscotland.co.uk
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Hi @RuaLima5 I have been thinking of you, how are you doing, thinking and feeling now?
Look after yourself
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