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Dealing with GvHD - 1 May 2024

It was 24 March 2022. I was sat in the hospital clinic, with my mum and my consultant. I had just finished two rounds of chemotherapy following my relapse in December the previous year. I was now preparing for my second stem cell transplant, my first having been from a 7/10 match umbilical cord donor from a female in France. My consultant told me that for my second transplant, we were going to take a different approach. Chemotherapy alone would not be effective enough to ensure a long-term remission, and the emphasis this time would instead be on my immune system to be able to recognise a cancer cell and destroy it.

My dad was absent from this meeting with my consultant, not only because of Covid restrictions at the time, but also because he was having tests done in the clinic downstairs. He was going to be my donor this time round. My consultant, and the many other consultant haematologists in the department, agreed that a haploidentical transplant (a parent donor transplant) was the best option for me.

Being 50% your mum and 50% your dad meant that when it came to bone marrow, each parent would only be a 50% match. This had worrying implications for me as the recipient because not having a matched donor would cause chaos in my body, and possibly lead to rejection. But the chaos was the doctors’ intention. Haploidentical transplants were a relatively new procedure and had only been trialled since around 2002. What the doctors wanted to do was cause the Graft vs Leukaemia (GvL) effect, where my new immune system consisting of my dad’s cells would be able to recognise a cancer cell in my body and destroy it. A sign of the GvL effect was having Graft vs Host Disease (GvHD), which most commonly would show up as a skin rash, but could also affect the bowels, eyes, mouth, genitals, etc. In GvHD, the donor cells (graft) enter the patient’s body (host), and detects the host’s cells as foreign, and begins to attack harmful cells, such as leukaemia. But the problem is, is that it begins to attack all ‘foreign’ organs, hence the symptoms explained above. GvHD is graded – Grade I is mild, Grade II is moderate, Grade III is severe, and Grade IV is life-threatening. GvHD is controlled by immunosuppression, as immunosuppressants, such as cyclosporin, tacrolimus, and steroids, such as prednisolone, suppress the patients’ immune system, to eliminate the pressing need for the donor cells to attack them.

I’d suffered from no GvHD following my first transplant in August 2016, but my experiences after my transplant in April 2022 still affect me today. The first sign of Acute GvHD was a rash in June 2022, after I’d noticed I was becoming itchier, but as my doctor described it, it was ‘almost invisible’. The mildness of my condition meant that my consultant didn’t really want me to increase my immunosuppression, as I’d just come slightly down on my dose, and didn’t yet want to put me on steroids. The strategy, therefore, was to treat the symptoms, not the cause. I was given a steroid cream, called Eumovate, which would act as an anti-inflammatory and help with the itching; I was required to wash with a soap substitute called Dermol, and was advised to moisturise with Diprobase twice a day. Keeping moist was key as dry skin would make GvHD worse. Unfortunately, my GvHD would worsen and Eumovate was replaced with a stronger steroid cream, called Dermovate, and I’d have to be put on prednisolone, a corticosteroid, to work as an anti-inflammatory and to lower my immune system further. I was put on 80mg of steroids and was able to wean myself down successfully. My rash came and went throughout the summer of 2022, but it seemed as if my short period of taking steroids seemed to do the trick, as my Acute GvHD was controlled well with the steroid creams.

I ended up back in hospital in October 2022 for an infection as a result of my weak immune system. Overall, the ward doctors were happy with my progress and wanted to see me reduce my immunosuppression further. Unfortunately, the tapering process was too quick and my body reacted with the worst GvHD flare up I’d experienced yet. My feet were bright red and the skin rock hard, with painful blisters on the palms of my hands. My eyes were dry and red, and I’d lost all sense of taste in my mouth. Patches of rash were all over my abdomen, and I was also experiencing GvHD of the gut with frequent diarrhoea. The doctor now deemed me to have Chronic GvHD, my steroid creams were intensified to the more powerful, mometasone, my immunosuppression was significantly increased, and I was put on 160mg of prednisolone. Due to the long-term effects of steroids (which I will write about in a future blog), I am still having to take them today. I was also required to start extracorporeal photophereisis (ECP) treatment, which involved being attached to a machine every two weeks, where my blood would be filtered and the GvHD-causing cells would be attacked by ultra-violet light. This will also be explained in another blog, but ECP is not an overnight process, and almost two years later I still haven’t ‘graduated’ from the machine, to use hospital terms. I live with on and off bouts of Chronic GvHD to this day, and it has been a real pain to put up with for two years. But there are also benefits: even though I always need to be aware of my 50% chance of relapse, I am at least reassured that there is some GvL effect going on in my body. It’s just a shame I have to live a life of being itchy.

Having suffered from GvHD for almost two years now, I’ve been able to develop some tips on how to cope with it. It’s not the typical advice of ‘Don’t scratch!’ because that was advice that I, myself, couldn’t follow as the itchiness is unbearable. GvHD will be a constant pain, but there are a few things than can make your situation better.

1.      Tell your doctor as soon as symptoms start to develop. I always had a fear of going back into hospital because I wanted to live my life. One mistake I made after my hospitalisation in October 2022, was that I clearly noticed a rash getting out of control on my feet, but I didn’t want to tell the doctor. Just how bad I’d gotten was clear when the doctor said that it was at least Grade III GvHD, and I was told off for not informing them sooner. Had I informed them sooner, perhaps a less-aggressive strategy to deal with it could have worked instead, rather than the treatments that have left me struggling to this day.

2.      Keep on top of it. In a future blog, I’ll highlight the issues of steroid creams, as they have absolutely destroyed my skin. But with GvHD, it’s about weighing up the options. Stretch marks that will hopefully fade long into the future, or live a life of itchiness? Keep up with your cream regime as prescribed by the doctors, however tiring it might be. At one point, it was taking me an hour a day to apply my creams, as I had a cream recipe of Eumovate, Dermovate, Trimovate, Mometesone, Hydrocortisone, Diprobase, Dermol, Fucidin H, Clindamycin, 50:50, Balnium, and I’m sure there’s some that I’m forgetting. This was whether a rash was present or not – prevention is key.

3.      Moisturise regularly. This is another difficult one as it’s one of those things that I really can’t be bothered to do, especially on top of all the creams that I was having to apply. But it is true that dry skin makes the itching worse, so keeping the skin moist is the best approach to take. Firstly, I was using Diprobase, until very recently in February 2024 when I was hospitalised for an infection, and given EpiMax instead.

4.    Take cream to bed with you. It is impossible to sleep when you have a GvHD rash because you are so itchy. I’ve often had to go downstairs to the bathroom to apply cream in the middle of the night. While I don’t recommend applying Dermovate more than prescribed due to the damaging effect it has had on my skin, at times I have had to resort to this. Now, I often use anti-itching Balnium cream, which is less harmful and works by moisturising your skin. Ask your doctor to prescribe this for you as it could alleviate the itchiness while sleeping. I also advise carrying Dermovate or Eumovate in your bag with you if you are away from home as you never know when it might come in handy.

5.      Don’t spend too much time in the sun. Hot weather tends to make my itchiness worse and can sometimes bring on a flare up. Even though my worst flare-ups happened in the winter months, it was actually in the summer when my itchiness was at its most unbearable. Cover your skin if possible to limit your exposure to the sun.

In my book, My Leukaemia Fight, my experience with GvHD is covered in more detail in the final two chapters. The links to both the paperback copy on Shopify, and the eBook on Amazon, are available on the homepage of my website.