Total Lymphoid Irradiation (TLI)

So I have finally started my radiotherapy treatment and this is week 2 (of 5).  It seemed a long wait to get going but I am sure it will be over before I know it!  I think its quite difficult for people to understand what exactly I am having done, as you most commonly hear about radiotherapy in the context of cancer.  So I thought I would blog about what it actually is!

What is Total Lymphoid Irradiation?
It's where radiation is applied to all the main groups of lymph nodes in the body - these are found on the sides of the neck, under arms, chest, abdomen and groin. The spleen is also included.

The lymph nodes are major part of immune system and contain lots of immune cells.  The purpose of nuking them with radiation (basically x-rays at higher dose) is to temporarily destroy immune cells with the aim of suppressing the immune response. 

What's that got to do with chronic rejection?
Chronic rejection after lung transplant isn't really that well understood, but it's to do with my own body recognising the lungs as foreign, and mounting an immune response (e.g essentially attacking them).   This immune response can get carried away, causing ongoing damage to the lungs.  The radiotherapy aims to dial down the immune system and hopefully switch off this errant response.  The balance is to suppress the immune system enough to stop the process which is damaging my lungs, but not suppress it to the point I can't fight infection.

Is it the same as radiotherapy for cancer?
It's the same machine, but with a lower dose of radiation - because the aim is not to kill cancer cells but to dial down the immune function.  Cancer treatment is normally targeted with high intensity at one part of the body, where as this is lower intensity but over a very large area.

What is the treatment like?
I have to lie on a metal trolley - this is not good for bony backed people like me!  I have a mask to wear over my upper torso (this was made before treatment to fit me)  - the sole purpose is to keep me in an exact position.  It is clipped down to the trolley on either side, so you really can't move!  It's not sore, but very snug fitting. 

I also have various crosses and lines drawn on me with permanent marker (covered with dressings) that will remain for treatment - these are for getting me in the right alignment.  They then take scans of all the treatment areas at each session - to ensure everything is lined up to target lymph nodes accurately (and to avoid my organs).   They then they move on to the treatments.   The actual radiation treatment only takes minutes per area, but because of the scans, I have to remain in the same position for about 40 mins total. I am finding this quite hard!  I tend to recite various lists in my head (e.g all the animals starting with 'a' I can think of).   Otherwise I start thinking about the mask being tight, feeling the trolley digging into my back, and getting overwhelmed with the urge to move!  I can't wear headphones as the mask covers my ears, but they did say I could bring a CD and they can play it, so will maybe try this.

I will have 2 sessions per week for minimum of 5 weeks - sessions could be delayed if my immune cells drop too low.  I get bloods checked weekly and see the consultant once a week.

What does it feel like?
I don't feel anything when they do the radiation treatment.  It's just like getting an x-ray.  I am not 'radioactive' afterwards.  I just feel stiff from lying so still!

What are the side effects?
The main side effect is exhaustion and fatigue.  This occurs in all types of radiotherapy but more often in TLI due to the large area being treated.  It's not well understood why it occurs.   I wasn't too bad the first week but am really starting to feel it now.  It's an odd feeling - like the sense that you your battery is drained and I just can't shake it off.   I have a feeling I might be quite wrecked by the end of this!

Radiotherapy side effects also depend on areas of body being treated - because lots of areas are being treated this can be quite varied.  At the moment I am having some problems with nausea - probably worse because of nodes in abdomen being treated.  I've got meds for it but haven't been able to drink coffee.....this is an emergency for me haha!!   My taste has also been really strange (apparently salivary glands are sensitive to radiation). 

What happens after?
It takes a while for the body to recover after and for the fatigue to pass.  The consultant suggested about 6 weeks to recover post treatment, but it varies a lot between people and it will also depend on what's happening with my lung function.

How will we know if it's worked?
The only measure of whether it works will be my lung function.  I have not had this checked since August clinic - because the treatment plan would be the same regardless of the current number.  To be honest it's quite nice not knowing what it is at the moment - it's so distressing watching the numbers fall when I can't do anything about it.    The plan will be to get reviewed by newcastle after treatment ends.  At this point we would expect my lung function to be lower than last measure  - because it will have fallen in interim period.  The actual effects of stabilisation could take 3-6 months post treatment to occur, so I can also expect further decline in this period.   If the radiotherapy works then my lung function will hopefully stop falling (fingers crossed stopping at a level I can still function well) and in some cases might improve a little. 

What if it doesn't work?
I'm not scared of radiotherapy but I am scared of it not working.  If my lung function continues to fall despite treatment, then there are not really other options.   How quickly it falls is an unknown entity - it could randomly slow down/speed up for unclear reasons. Although I am always hopeful that new treatments become available!   People have asked me about second lung transplants.  These are rare but not impossible.   Second transplants are complicated  - the surgery is more difficult, the matching to donor lungs more complicated and it's generally high risk. I have however made it really clear to my team that I would want to be assessed and considered for this option if it came to this. 

However,we are a long way from this stage and at the moment my focus is on radiotherapy working.  It simply has to!!

I will blog more when nearer end of treatment..  but any questions please just ask!