Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
New Years Eve we received this news ... we are still reeling as a family of course but I particularly am struggling to deal with hubby's news, especially as he is such a fighter but has made the decision not to accept treatment for this :-(
So sorry to hear your news.. certainly not what you wanted to hear. ALL is a tough fight and I am sure your husband has made his decision for your own set of circumstances.
If you need support please contact the Macmilliam helpline 0808 808 0000. Good luck with the coming weeks and if your husband changes his mind and wants to know more about the treatment please ask.. There are a few of us on the forums that have been through it and come successfully out the other end.
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Thank you Paul
He has accepted TKI's thankfully but they have told him Trials / SCT and BMT not an option due to FTC he has had for last 6 years. He is getting very tired very fast though despite the TKI - they are not sure if it because he is taking two types (Never been heard of before) or if it is the ALL. Transfusions starting the end of this week / beginning of next to help with red blood cell and platelet drop, they are managing the white cell drop with daily injections. I can't help but feel this is not looking good but have to admire his strength in fighting especially as he originally decided no more treatment.
Lets hope the TKI therapy helps your husband. The transfusions may help with the tiredness as as when the red blood cell counts are low it does make you feel very tired and lethargic.
I remember that after some red blood cells I used to feel much better the next day and have a lot more energy.
Fingers crossed he perks up with the transfusions.
You were absolutely right, the blood and platelet transfusions he had made a marked difference. We are still here, still fighting, but had the unfortunate news three weeks ago that the new TKI they had introduced only worked for a very short while. They introduced a 3rd generation TKI last week, to run alongside the 1st generation one, after a hospital admission with Neutropenic sepsis but have fortunately found the source. It is in his blood stream so will be 'managed'as best they can while the try this final treatment. PICC line going in tomorrow as veins are suffering from continual failure of cannula's over the last week's and hoping the plan they have to let him go home next week for whatever comes next comes to fruition.
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