I am new to this forum but not to Cancer having had Accute Lymphoblastic Leukemia (ALL) 5 times.
I was 1st diagnosed in June 2018 and had a bone marrow transplant on the 1st of November 2018. About a week into my recovery I developed sepsis and they were rather surprised that I survived the night.
I went for about 2 and a half years before my 1st relapse and after treatment was given a chemo drug in tablet form called ponatinib which worked well initially. Whilst in hospital I contracted Cdiff which I had 4 times in 6 months before being given a fecal transplant which has so far (3 years) worked well.
In spring of 2023 I developed ALL in my head. I was given an intense course of Intrathecal chemo and whole head radiotherapy therapy. Again I develop ALL in my brain in November 2023 and this was knocked backward with more Intrathecal chemo.
At the end of January my regular bloods showed an increase in White blood cells and the microscope showed that the Leukemia was in my bone marrow again.
As a last chance saloon get out of jail card I have now had CAR-T therapy. This is quite a new treatment in which they take your own white blood cells, genetically modify them and then give you them back. In theory they should destroy the bad white blood cells.
Unlike a bone marrow transplant CAR-T is quite hard to get over and can have some side effects one of which is neutropenia. Three weeks ago I was down to 0.20 which is 1/5 of the minimum target figure. GCF injections put this up to 3.5 but this has fallen back to 0.8 so I had more GCF earlier this week.
I am also very fatigued and have developed peripheral neuropathy in my feet which whilst not painful makes walking extremely difficult.
The worst part for me of having Leukemia is an unsympathetic wife who thinks I am putting on feeling awful and the fact that I have not been able to go to work for 6 years. This is very frustrating as I had a fantastic job that I loved as an airline pilot. I will not be able to fly again having had Leukemia in my brain. Quite what type of employment I could get if I ever feel well enough to go back to work I do not know.
My company critical illness insurance also came to an end last November so we are slowly burning up our savings.
Unhappy days
Hi again Dornier228 and I am just dropping in past to welcome to this corner of the Community.
As I said in your post in the New to Community I don’t have Acute Lymphoblastic Leukaemia (ALL)....... so let’s look for group members looking in to pick up on your post and get back to you.
You can also click on the main ‘ALL Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Do check out Leukaemia Care UK who run various Leukaemia specific support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
As I have had 2 Allo (donour) SCTs I do appreciate the challenges of living with a fragile immune system and even now, coming up to 9 years out from my second SCT my immune system still not great with my bloods regularly hovering at the lower side of acceptable ranges.
A diagnosis like this can indeed have a significant effect on life...... I had to take early retirement from teaching at 55 due to how my condition had developed and having a low immune system I was always catching infections from my students.
Always around to help more or just to chat.
