F-ing steroids and skin GvHD

Hello everyone,

It has been a while since I have posted a blog, 8 months to be precise. Since getting home from hospital following my stem cell transplant I hadn’t felt up to writing about everything, but have been reading a few blogs recently and having found it extremely useful, and so I felt the need to share what has happened in recent months. Whilst I was in hospital having my stem cell transplant, when I felt up to it, I tried to post as often as I could as I wanted to document the highs and lows of this process, as there really isn’t that much first hand documentation of stem cell transplants. The nitty gritty of my hospital time is all available in the Stem Cell Transplant section of the blog page.

I don’t think any amount of reading or advice from doctors or clinical specialist nurses (CNS) can truly prepare you for a stem cell transplant. In comparison to the stem cell transplant, my induction chemotherapy treatment felt quite literally a walk in the park! As most of you know I spent 11 weeks as an in patient for my transplant. I almost got out at 6 weeks, the average time quoted for a transplant, but after a re-activation of CMV virus, I spent a further 5 weeks in hospital. Fortunately I didn’t have any symptoms (commonly flu like) so didn’t feel unwell but this only added insult to how I was feeling and how much I wanted to get home and out of that room. I found these last 5 weeks extremely difficult and psychologically really struggled.

Getting home was amazing, I can’t put into words how it felt to get in the car and see the back of the hospital, though I knew it was really only the start of my recovery. After 11 weeks in one room with very little movement, and having been on steroids that metabolise muscle mass for over two months, my legs were messed up. I had to shuffle up and down the stairs on my bum because my legs were so weak, it was a horrible realisation of the physical recovery ahead of me. When you get home from a stem cell transplant you are pretty much under house arrest for the first months, predominantly because the outside world and people pose a high risk of infection and your new immune system is that of a new born baby. This was pretty tough as you feel you get home and life might be a little more normal, but then you have to readjust your expectations and adapt to this new ‘normal’ – which is basically another space of isolation. On top of this I had to be extremely careful in the sun, and so being home in the height of summer was tough. Having had total body irradiation (TBI) your skin is very sensitive to the sun and you also are at a higher risk of getting skin cancer (cheers), and so I had to avoid the sun at all costs particularly during these first few months, which was quite testing at times.

Once home we were heading back to clinic twice a week to check my blood levels and assess/update all the different drugs you are on following a transplant. The most important being the immunosuppressants (cyclosporin), usually these drugs suppress your donor cells to ensure the process of rebuilding your new immune system is a gradual one, and slowly these drugs are reduced down in dose. Unfortunately these drugs were deemed ‘toxic’ to me and my very precious bone marrow, whereby the drugs were actually ‘smashing up’ (my doctors words) any new cells in my marrow – not good. My white blood cells and platelets in particular took a bit of a beating, which meant I needed frequent IVIG injections or platelet transfusions to keep my numbers high enough to be walking around safely or using sharp knifes..!! This meant a lot more appointments and more trips up and down the M3 to Southampton. I was taken off the immunosuppressant drugs quite quickly, and we started to see improvements in my blood counts.

Without any immunosuppressants we were giving the donor cells almost free reign of my body, and for me this meant I started to experience symptoms of GvHD (Graft vs. Host disease). Where the graft (donor) cells see the host cells as foreign and attack them. GvHD can affect different tissues of the body including; skin, gut, liver, lungs, eyes, mouth, genitals. A component of GvHD can be seen as a positive side effect of the transplant, with doctors suggesting that the donor cells will also attack any leukaemia cells that may be present, known as the Graft vs. Leukaemia effect. Whilst I was in hospital I had gut GvHD very early on after receiving my cells, which was effectively dealt with, with high dose steroids. Though I was very glad to have this sorted quickly, once you start high dose steroids, getting off them is something that takes a long time, with the dose dropped very slowly over months!

The side effects of steroids and the GvHD are the two aspects I’ve wanted to write about the most, as these two components of post transplant life have been the hardest for me. First let me tell you about the joys of being on steroids long term. Here is a list of the most common short and long term side effects;

• Abnormal fat deposits on face, neck and trunk (known as Cushing syndrome) – basically you look like a hunched, round bellied moon face!
• Increased appetite – commonly leading to weight gain (affirmative!!)
• Muscle wastage or weakness
• Fluid retention
• Dry scalp
• Trouble sleeping
• Thinning of skin
• Red face
• Thinning of scalp hair
• Facial hair in females
• Cataracts (TBI and a treatment I’m having currently called ECP can also cause this, so good luck to my eyes!)
• Osteoporosis

As you can see, this list is not fun nor complete, and I have definitely experienced most of these. These side effects have really been the crux of my dark days. I was not prepared for the physiological changes I have experienced post transplant, predominantly due to being on steroids. I have put on weight, my body shape has changed drastically, and until recently I was bald. I hardly recognise myself in the mirror, and it has really affected my general confidence and self esteem. The significant physiological changes to your body are something that I feel needs to be spoken about more frequently, with more information made available to the patient pre-transplant to prepare them for this stage of the transplant process. Because although the main aspect of the transplant is getting you through the conditioning treatment and obtaining cell engraftment, with a rebooted bone marrow, the ongoing side effects post transplant are just as hard.

The GvHD I started to experience at around 4 months post transplant was of the skin, which coincided within a week of me getting off the steroids. My complete joy of being off the steroids and minor reduction in a fat face was very short lived. For all the negatives effects of steroids that I just stated, they are very effective drugs, and fortunately for me (not being able to be on the other suppressive drugs) have a slight immunosuppressive effect too. However, this did mean that as soon as I got off them my donor cells were pretty much in charge and that’s when I started to get rashes on my face, arms, legs, and back – very attractive. These varied in how the presented, but mainly look like sunburn, flushing, or measles/spot like, and at times were/are very itchy and agitated further by heat and tight clothing. To my joy, I was informed the most common first line of defence/treatment is steroids and topical steroid creams, and so I was put back on the steroids, which I am still taking now. Skin GvHD can be extremely debilitating and very depressing. Having to apply the topical creams effectively is very time consuming, your clothing choices are restricted, where you go and what you can do is all governed by how good your skin is that day. The temperature inside and outside, how sunny it is, and quite frankly how confident you feel about going into the world with a rash all over your face all play a part in dealing with it.

Due to the negative long and short term side effects of steroids, they are not classed as a long term treatment plan for GvHD. Fortunately, there is another treatment available and is called Extracorporeal Photopheresis (ECP), which I started just before Christmas. ECP involves taking out some of the patients blood (a little more than that of a blood donation), running it through a centrifuge where the red cells, plasma, and leukocytes are separated. The red cells and plasma are returned to the patient throughout the process (see picture), but the T-cells are treated with UV light and a drug before being returned to the patient. The whole process can take 2 hrs, sometimes more, and I am having this treatment twice a week (Thur/Fri), fortnightly. Though it can take months to see any significant results (depending upon the severity of the GvHD), and as a patient you may have to have this treatment for months/years, the doctors state promising results from it and it will hopefully mean I can finally get off the steroids for good!!

So, that was quite a long update but wanted to share what I felt I could for now. I hope it is helpful for anyone in a similar boat, and maybe eye opening/educational for anyone else reading and keeping up with this blog. I have to remind myself of how far I’ve come and although 8 months has passed since I received my magic cells, which at times has felt like an eternity, I am still classed as early into the road to recovery for a stem cell transplant. Since being home I have had two bone marrow biopsies, both coming back with comforting results of a disease free marrow. My next one is next month and will be my 9 month biopsy. These biopsies come hand in hand with anxiety and I know a lot of patients really struggle with them. All I can say is so far so good, long may that continue. I have to say it is not all bad, for now I am getting out walking lots, running (trotting) very short distances when my wasted steroids legs allow, catching up with my wonderful friends, eating VERY well, dipping back into the outside world as much as I’m allowed, and this past week started discussions to get back to work in some capacity, which I am very excited about. Doing something that isn’t related to hospital or treatments, and using my brain again will hopefully be refreshing and therapeutic. I had a lovely christmas with my wonderful family, and have some very thin baby like hair on my head. Next month I turn 30 and I can’t wait, some people may not be happy to celebrate this milestone, but I can honestly say I will always be happy to hit each year I am blessed with!!

It has been a slow road to this point, and though there have been a lot of negatives stated in this post, I feel extremely fortunate about the stem cell transplant, side effects and all, because without which I may not be here today and that is the main thing! So mostly I try to ‘keep my head up and heart strong’ and keep putting one foot in front of the other…

Lots of love, Alex (Mrs Potato Head) xx