I have taken the plunge to write something rather than be an observer. Thank you for this forum it has been useful to read posts, hear others experience and to see the support that is offered.
I hope I have posted in the right place, as I haven’t used Social Media Before!
My Partner of 30 years was diagnosed with AML Flt3 D835 the week we went into lockdown after a routine blood test for Reynauds disease (cold fingers) He had 20% blasts. This hit us like a rock to say the least, especially since I had just lost my dad. My partner was taken into hospital in April for Aza plus venetoclax, as strong chemo was not recommended at the beginning of the pandemic. He got into remission with incomplete blood recovery and had 4 rounds. He was neutropenic the whole time and got C-diff and sepsis in July 2020 and I could not visit him in hospital for the month he was there due to lockdown, which was excruciating.
After 4 rounds of Aza, I gave up my career and we went away to our house in Cornwall we had been renovating for 3 years. The local hospital took bloods weekly, but his counts kept falling and we eventually came back to London to find is AML was back with vengeance (60% blasts) in December 2020 and we were told he would need to come in for strong chemo over Christmas. However on getting his full blood profile back on Christmas Eve, it was seen his AML had mutated to FLT3 ITD so chemo was not likely to work. He was put on gilteritinib a fairly new FLT3 inhibitor.
We got a second opinion from Kings hospital who got him ready for heavy chemo + stem cell transplant, saying there was a 90% chance of a match. However there was no match on the register and we were all devastated. Our 2 children age 18 and 23 then gave samples for a haploidentical transplant, but while waiting the long and short of it was he had rashes, and his eosinophils started rising, he was taken of gilteritinib for a while and then decided to add aza to it. All this time he has been transfusion dependent for hemoglobin and platelets 2 x a week.
However after second and third round of aza he got sepsis. All in all spending 8 weeks in hosptial, coming out for a day 3 times, then rushing back to a&e in the middle of the night with a fever again, having to leave him there and go home alone. I was only allowed one visit for 2 hours a week and the loneliness and desperation was awful. The infections could not be controlled and we tried to get him out on one intravenous antibiotics once a day that I was trained to administered but the infection continued and we only managed 4 days before back in the now all familiar a&e. We eventually got him out 10 days ago and I administer intravenous antibiotics 3 x a day and he continues to have transfusion 2 x a week. He is now off all leukeamia medication as infection control is the priority. He is still severely neutropenic 0.12 and his platelets never go over 20 even after transfusion. Biopsy showed blasts still at 8%, but very little good bone marrow left.
We have managed day trips and a long weekend away in the 10 days he has been home and he is ever remarkable and strong, driving all the way to Cornwall after 9 weeks in hospital!
However it appear that the only hope now is a clinical trial if one is available as any type of chemo would now kill him. Our hope is fading and it feels like we have lived through a nightmare. I feel traumatised by the 9 weeks we were apart and the loneliness of that time.
Sorry this is such a long post, but its been a long time coming and as it has not been a good outcome for us I have been reticent at coming forward, but maybe need some encouragement now from others who have been through similar.
Sending love, hope and courage to everyone on this site. xx