Up The Farway Tree

 Mini Update

I spoke to my CF consultant and transplant consultant today.   The appointment with haem-oncology is in 2 weeks time.   The first line treatment is to reduce immunosuppression (since this is main cause of PTLD).  One of my drugs was stopped and the other reduced to minimal level after the CT scan 2 weeks ago (before we even had biopsy) so at least we are quick of the mark with this.  I think we can then review how the lymphoma has responded to these changes.  This will have to be weighed up against the pain I am getting from the enlarged nodes, how much of a response I have to the drop in anti rejection drugs vs the potential side effects of other treatment options.  My understanding is that they can use the EBV level in my blood to guide response (as well as further scanning as needed) but I'm not sure if bloods will get checked again at the appointment in 2 weeks, or if that is too soon.  It will be good to meet with the doctor and go over the plan.

The biggest risk having much lower levels of immunosuppression is that my rejection returns - so I have to monitor lung function twice weekly on my home monitor as well and keep Newcastle informed of any changes. 

I am so impatient though - I would like to just get straight in and nuke these nodes with the strongest treatment going and I find it hard to watch and wait.  I feel like we did this for so long with my chronic rejection - just waiting to see month on month if there were any changes and never feeling very settled between.   The pain does seem more under control just now, so hopefully I can try to get some normality while we wait.   However in saying that, I am not planning to see anyone just now or go anywhere - due to covid risks, rather than related to the lymphoma.  I see the numbers rising in the west of Scotland again and as the summer weather has taken a turn, I'm not keen to have lots of people in the house, where it's hard to properly distance.   I'm anxious enough that Estelle has to go to school, so I have to try and keep myself as safe as possible otherwise.

Next update will probably be after my appointment in couple weeks!