Up The Farway Tree

Rollercoaster

The last cycle turned out to be a bit of a rollercoaster and I only got results of my scan yesterday - so thought would hold off blogging until I had all the information!  It was quite tricky to understand but I'll do my best to explain.

So after the last chemo cycle,  I was struggling with fatigue but otherwise coping ok.  Unfortunately at the mid cycle point I began to feel quite unwell - aching all over and just quite miserable.  I developed a fever and ended up back in hospital on the Sunday night with another neutropenic sepsis.  I was trying at all costs to avoid admission due to the covid rates in Glasgow, but I didn't really have much choice.  The admission itself was a bit smoother and I was moved to the CF ward on the Monday and had my 5 days of IV antibiotics.  The source of infection was again unclear but I gradually improved and was released last Friday.  I really haven't bounced back the same way I did after the first sepsis, but I think there are a number of reasons for this.   I am a bit anaemic at the moment (chemo kills of red blood cells as well) which is contributing to the fatigue and feeling more short of breath, plus the accumulative effects of multiple chemo cycles.  

I have also continued to be quite chesty and they did culture a fungus (aspergillus) from my lungs, so I have also started on anti fungal medication for this - I suspect this is giving me a few side effects.  I will be on this for at least 3 months.  Aspergillus is a common fungus present in the environment  - we all breathe in spores and our immune system just deals with it.  It is common to find it in people with CF's lungs and it is often just sitting there doing nothing.  I did have it before transplant and it didn't cause infection as such.   It's unclear just now whether it is just sitting there, not actually causing infection - but because I have chest symptoms, and am very immunosuppressed,  it was felt best to treat it more aggressively to be sure.

They managed to do my CT scan on the last day of admission, but I didn't get the results until my appointment with haemoncology yesterday morning.  The overall picture is cautiously optimistic, but the bottom line is that I will need a PET scan (in about 9 weeks from now) to give a clearer result. I'll try to explain!

The original abdominal CT scan I had in August (when first diagnosed) showed one main group of enlarged necrotic lymph nodes merged together, forming a mass.  There were also multiple other slightly enlarged lymph nodes throughout the abdomen.   I then had a PET scan 5 weeks later to check what was happening on stopping immunosuppressants and to check rest of body for nodes.  The PET scan is more useful at detecting active cancer cells because the rapidly dividing cells 'light' up on the scan (they take up the glucose tracer).  This scan showed that the big mass had grown further and more nodes had appeared in abdomen.  Because it was a different kind of scan it was hard to do direct comparison, but this is the scan that led them to start chemo a couple of days later.  I then had another CT scan after 2 chemo cycles - this showed that the main mass had reduced by nearly 50% and the other nodes had shrunk.   The most recent scan was another CT scan (after 4th cycle) - this showed that the the main mass had remained static and the other nodes were now normal size.   The consultant explained to me that although CT was good for looking at sizes and volumes, it is not good at telling you the 'activity' of the mass e.g is is actively dividing cancer cells.  After treatment for lymphoma, the treated, dead cells can lead to scar tissue  - which is indistinguishable on the scan from active cancer.  So the fact this mass reduced significantly after 2 chemo cycles, then remained unchanged, suggests what they can see now is actually scar tissue, not active cancer.   This would be an amazing result! However there is no way of confirming either way at the moment.  If I had a PET scan just now it could give a false positive - meaning that residual inflammation in those cells from recent chemo could still cause it to light up on scan - so this scan can't be done until 6 weeks after treatment finishes.

The current plan then is to finish the 6 cycles of treatment (but remove the CHOP part) - so I had another Rituxemab infusion yesterday and will have another in 3 weeks.  A PET scan will be arranged for about 6 weeks after the last infusion and will hopefully give us a clearer idea of whether I'm in remission.  The logic for removing the CHOP (chemo) part early is because I cannot risk another sepsis, and in fact, it could be that I am already in remission and don't actually need more chemo.  Of course, on the flip side, the cancer cells might start dividing again without the chemo or the residual mass might still have cancer cells when I have the PET scan - and if this was the case we would need to consider other treatment options.  However, I do feel that fact I had such a good response to only 2 chemo cycles is a huge positive and I am staying very hopeful that it will be good news in the new year :-)

I am so glad I am not getting more chemo just now as I really do feel quite wrecked (for want of a better word!)  I have been going to bed at 7pm, sleeping all night and don't feel rested in the morning.  I am finding everything a struggle just now - getting dressed, moving around, going up the stairs etc.  I am very deconditioned, but I am hoping that without the chemo part of treatment, my body is going to get the chance to recover now.  My weight hasn't increased, but again, without chemo I think I can get this more on target.  I haven't checked lung function since the last cycle as I feel I can't give it my best effort and a lower result wouldn't change the treatment, but would increase my anxiety!  I will be chatting to Newcastle team again in early January and we can take things from there.   

At the moment I am focussing on just enjoying being at home and spending time with my wee family in the lead up to Christmas.  It's probably a good thing that we can't really go anywhere over the festive period and I am sure we can have a lovely time at home.   Estelle finishes school on Monday and is very much looking forward to Christmas!  I'm so grateful to be warm and cosy, watching Christmas movies and eating mince pies - what more can you ask for?!