Up The Farway Tree

 First Appointment

I had my first appointment with the haematology/oncology consultant this morning.  We spent time going over the history, my last scans, took lots of bloods and discussed how we move forward.  I feel better having now met someone and discussed what my treatment might look like, as opposed to reading things online and not being quite sure what applied to my case.

She confirmed that Post Transplant Lymphoproliferative Disease (PTLD) is an umbrella term for a number of different types of lymphoma which can occur after a transplant - and that are related to the body being immunosuppressed.   My specific type (if you look through a microscope) is "diffuse large B cell lymphoma" which can occur in non transplanted people as well.  In those cases chemo would be used first line, but in the more specific type occurring after transplant then treatment is slightly different.

As I previously mentioned the first line treatment is reduction of immunosuppressants.  The hope here is that my body's own immune system is woken up and given a chance to recognise the cancer cells and start getting rid of them through the normal immune process.    The balance of course is not allowing the immune system to become active enough to notice the transplanted lungs and kick of rejection again.  They normally allow around 4 weeks on reduced immunusuppression alone (which I have done now) before deciding if this is effective.  So for this reason I will have a further scans on Friday and also had EBV bloods checked today (which we hope are reducing, indicating the body is getting rid of the abnormal cells containing EBV).   The aim is to get rid of the cancer, not just control it - so we would need to see a significant change.  At the same time I need to monitor lung function - so far this seems to have remained stable on my home monitor.

The scan on friday is a PET scan.  They inject a radioactive tracer into the blood stream - this is taken up by the body in areas of high cell turnover - which would be seen in cancer cells (especially this type of lymphoma).  These light up on the scan as "hot spots" and give a good indication of where the nodes are.  This is useful for giving a staging (e.g are there nodes in more than one site, or activity within any organs) . Although nothing else was seen on  the last CT of my chest and neck, this is more sensitive.  The staging itself wont actually affect what treatment I get, and even advanced stages (e.g nodes in lots of different areas) would still be expected to respond to treatment - however PET scan will be useful for monitoring response.  The CT of my abdomen will also be repeated to compare the size of nodes that were seen previously.

After my bloods and scans are are back, the doctor will let me know if we need to move onto 2nd line treatment.  This is a drug called Rituximab - it's a really specific antibody that attaches itself to the cancer cells - basically marking them for my body to nuke.  This would be a weekly IV infusion for 4 weeks - at which point scans would be repeated to check response. If I was responding they might do a 2nd month of the drug and rescan.  If I didn't respond well enough after the first round then they would move to chemotherapy.  We didn't discuss that in depth today as I think we need to concentrate on one step at a time.

I am on long acting painkillers just now and have mostly been comfortable enough, but over the weekend did have quite a bit of pain again.  This does make me suspect that the nodes can't have reduced significantly.  I have also been very fatigued and getting sweats.   These can be associated with lymphoma but also could be for a number of other reasons.  My weight has dropped a few kg since discharge (despite taking supplements) and today was lowest its been since transplant.  I need to get on top of this ASAP!!

I am coping ok and just concentrating on hopefully getting on top of this as soon as possible.  We are in local lockdown so even if I wanted visitors, I can't have anyone to the house.   The covid situation is very frustrating at the moment as I really need to avoid adding any further complications, but it would be nice to have things to look forward to for a change.  I'm not bored at home by any means, and have lots of craft things I can do, and am also enjoying time on my own after 5 months of home schooling! So glad fluffy Dexter is here to cheer me up as well!

I will report back once I have had scans and know if we need to move onto more active treatment!