Not quite what I wanted to hear from the haematologist during our meeting today. As I mentioned in my last blog I was somewhat concerned that there were no appointments beyond the first round of chemo with the new GDP regime. Having got that resolved or at least partially to include todays appointment, I was a man on a mission today. Lets sort out were I stand and what’s going to be happening this year.
Things turned south rather quickly at the meeting when after expressing my disappointment with what I perceived as the lack of forward planning. The haematologist quickly turned things around to explain that there could be no plan! In a normal case of lymphoma even for someone who has relapsed there are international standards of care. These standards tell the patient you will be on this treatment for X number of cycles X number of weeks apart. Scans can be planned future appointments can be booked because the future plan is known.
Since my body had managed to defeat their best laid plans, so far, they can no longer work to a schedule. The lymphoma in my body and it’s growth or lack of it will determine what happens next. So the success or failure of the current round of chemo will be instrumental in the plan that doesn’t exist. One thing he did say is that with the resistance that my lymphoma has presented so far things look more on the negative side that the other. It was good that both of us agreed that the enlarged node in my shoulder appeared to be reducing. This could be a good thing but it doesn’t rule out the possibility that it’s spreading to other areas of my body.
If the current chemo works and the active lymphoma in my body is either significantly reduced or eliminated then there are two possible pathways. Proceed directly to an allogenic stem cell transplant. This would use my brothers stem cells as opposed to my own which were used last time. This procedure comes with much higher risks but would be the best option towards a longer term free from the disease. That plan may also be altered by doing some radiotherapy, but today I discovered that there are studies that show this can have a detrimental effect on the lungs during a stem cell transplant. Since I already have serious lung issues maybe this wouldn’t be such a good thing.
If the current chemo doesn’t work. Do not pass go. Do not collect $200 and prepare for a very serious discussion. I guess we just have to wait the five or six weeks for the next PET scan to find out, but then that could all change again based on what happens during treatment.
Talking about treatment the hospital have just called to say the results of my blood tests are not good. Red and white cells as well as my platelet count have fallen through the floor and I need a transfusion tomorrow. So no chemo this week and the non plan gets tossed out the window again.
A Lymphoma Journey 