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 2022 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 Dornier228 and a very warm welcome to the Community but sorry to hear about your ongoing journey.
I am Mike and I help out around our various blood cancer groups.
I don’t have ALL but have been on my journey with 2 rare types of Non Hodgkins Lymphoma for over 25 years relapsing multiple times…….. resulting in having significant treatment and more recently 2 Allo (donor) Stem Cell Transplants (June 2014 then Oct 2915)
Where are you based?…… it sounds as though you may not be in the UK?
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated ALL support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link below…….
…… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.
You can copy and paste the text from this post into your new post.
Do get back to me if you need further help navigating the community.
Thanks for clearing that up.
I see that you have put up a post in the ALL group so let’s see who are still looking into the group.
