Hi Rabbit. Thanks for the email. We have discussed CAR T Cell but that would be in the private setting or if i can find a trail. I actually have my meeting with my oncology team on Thursday as I had another PET Scan 10 days ago. So it’s dependant on that. But as you probably know i can feel the difference in my body especially the pain i am feeling. The 2 different doses of oxycodone i take dont take the edge off and I find myself dropping off all the time through tiredness. I dare say after thursday i will have a clearer picture, the last year has just been tough due having neutropenic sepsis, lung infections and pnemonia. The stays in hospital are becoming more common. I would love to have CAR T Cell Therapy as from my understanding (limited) once done thats sort of it. Im just tired of the daily drugs steriods especially. Im on 40mg weekly and hate what it does to me plus the weekly infusion. I know I’ve got to be happy im still here ive seen my kids get to 22 and 21 which when diagnosed was looking slim. This disease does funny things to you, i think a lot of it is not knowing exactly how long you have and that relapses can happen at anytime.
Thats my little moan out of the way. Sorry i hope it doesnt sound all doom and gloom. Just gets to you sometimes.
Appreciate your message. It really helps
