Blogged too soon....!

I think I tempted fate by blogging this morning!  I had a phone call from the haem-oncologist this afternoon as my scan had just been reported.  It is still due to be discussed with team tomorrow but the bottom line is that the nodes have actually grown.  If they had showed even some reduction then we would have moved to the rituximab treatment, but since it's actually progressed then I will be getting rituximab alongside chemotherapy (this is called R-CHOP).  I was taken by surprise as I had managed to convince myself that I wasn't going to need chemo and that I was in fact imagining some of the pain ...wishful thinking!

As my health is just a tad complicated then I need to be inpatient for the first session - hopefully just for 2-3 days.  I would get rituximab infusion one day and then chemo the next.  I need a negative covid swab before admission so this is getting done tomorrow.....if that's clear then I'll be admitted to the Beaston on Friday to get started (as long as there is a bed).

I'm glad that things are moving swiftly but disappointed that the nodes haven't even shrunk a little with the reduced immunupression.  It does make me feel more anxious for the future but I know I can only take it one step at a time!   Unfortunately I wont be allowed any visitors this time, not even Andrew, so it will be very strange.  I'm pretty used to being in hospitals though and it wont be for long.

I'll post again once I know for sure things are going ahead.  I'm not going to read up on the chemo just now - I'll just try and get a good sleep and organise myself tomorrow.  Any recommendations for easy read kindle books and trashy netflix please send my way!

Waiting....

I had the PET scan successfully last friday.  I had been quite worried about whether it would go ahead because your blood glucose levels need to be within quite strict limits.  This is because the radioactive tracer is attached to a glucose like substance, which is then taken into cells.   Normally it wouldn't be an issue but because my steroids have been increased, my bloods sugars have been wild!  Luckily they were ok on the day!  

I did managed to speak with the lymphoma nurse yesterday.   My scan will be discussed at the team meeting tomorrow and they will decide if need another CT and/or what next steps are.   I have been doing a lot more reading about PTLD and it does sound as if a lot of people do response to the reduction in immunosuppression alone - so it still might be the case that I don't need more treatment.  I will post once I know myself what is happening!

Otherwise, I have been ok.  I have added in some more supplements for my weight and have been eating better, so hopefully that will now go in right direction.  My lung function has stayed stable so far.  I am feeling generally tired and not quite myself, but to be honest, half of that might simply be the stress and anxiety!  I do struggle with being in limbo and always cope better with a plan!

I think its also been a big adjustment with Estelle going back to school.   I really did need the space and time to myself, but it is also harder to keep a good routine when she isn't around.  The covid situation is frustrating for everyone now and it is really hard thinking about going into winter with numbers rising.  Locally we have been in lockdown for few weeks so yesterdays announcement wasn't much change for us.  It is difficult not being able to have anyone to visit the house, as the weather isn't really ideal for garden visits now!  I am so lucky to have Andrew working at home though, or I think I would feel very isolated.   It's really hard not having mum and dad to visit - I would normally see mum quite often and it all feels very strange.  I only saw her last week as needed someone to take me to hospital appointment (can't drive on the current pain meds) and Andrew needed to stay here to get Estelle for school.  It's not great for mum either, as she would really like to be here keeping me company.  I think its important to follow the rules though - if everyone thinks they are the exception to the rules, then nothing will ever change.  What we do now is going to affect how Scotland copes with covid over the winter and I am certainly not going to be responsible for adding to the spread!

Hopefully by the end of this week I will have more to report!

 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! 

 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!