Hi I have used the boards in the past reading up and finding out info(mainly about coping mechanisms) when I was first diagnosed. But never really posted before. I made my decision to just hand my treatment over to my consultants and their team, I never even wanted to know type severity etc. Main reason was I was a pharm research scientist and I knew my background would take me down a worm hole of research & I didn’t want to go there!.
I later inadvertently found out it was genetically one with an unfavourable outcome ( A new dr though I already knew so just suddenly started discussing it/ options)
Anyway my post today is to give hope to those recently diagnosed or who like, I was, are having a tough journey on their treatment path.
1.My brother wasn’t a match no other good match could be found
2. I got so ill with each treatment (I hold the record in Scotland (or at least did) of 79 days before producing any white cells after treatment).
3. My lines kept being a source of infection so after chemo would get removed and cannulas would have to be used
4. My last round of chemo was canceled, Consultants decided I was too ill to get through it again and they were very worried that my bone marrow wouldn’t recover.
5. It was designated genetically a high risk type
So why am I saying all this. That was 5 yrs 8 months ago. 5 yrs 2months since my last treatment.
Even without stem cell and without completing the treatment plan (only ever consider this if your consultants are suggesting it), it can still work out OK - I have been declared effectively cured and discharged last week
I still have small issues I don’t make lymphocytes, my ferritin levels are still at about 400 but we are now stopping the blood removal as I am also a little anemic which gets a lot worse when the unit of blood is removed. Ferritin was at 3500 after transfusions during treatment so at least it is down
Main this is a now feel completely back to normal, and with lasts weeks discharge I am starting to plan ahead again. Until now it has been a psychological battle of I need to make the next big event (which is this Saturday for my daughters wedding). But yesterday I actually booked a holiday for next winter
Hope this post gives those just starting this journey a bit of a boost. Best wishes to anyone reading this and good luck!