On day +102, the bone marrow biopsy went ahead as planned, and I also had two units of red blood cells, as my hemoglobin was once again low. It was also time to do another chimerism blood test to see whether I had changed from being 98% donor; Normally, the hospital does a chimerism blood test every month after day +28, but given mine was 98% at day +28 there was no need to do so, as I was considered full chimerism already. I'm still waiting on the results of the chimerism blood test, but they are likely somewhat redundant now, for reasons that I'll explain later on in this post.
Although I kind of glossed-over the bone marrow biopsy above, it wasn't a very nice experience. There were a few occasions when the doctor doing the procedure forewarned me that I was about to feel "a weird sensation" for several seconds, and if you replace "a weird sensation" for "nasty pain", the doctor was spot-on really; I do sometimes wonder whether the local anaesthetic really helps that much. The procedure is all over and done with fairly quickly though, so it's not that bad really, even if it does sometimes hurt a fair bit when they do it, and ache for a few days afterwards.
A few days later the PET-CT scanner blasted me with yet more radiation, but the worst part of that experience is mostly just dealing with the boredom of laying still for half an hour or so. If you're curious what a PET-CT scanner actually looks like, the following is a photo of the mobile PET-CT scanner that I had my latest scan in:
In theory, the next step was a consultation on day +110 to discuss the results of the bone marrow biopsy and PET-CT scan. However, on day +108 I wasn't feeling so great, as I had a headache, loss of appetite, and was starting with a bit of rash (mostly on my lower legs and feet). When I checked my temperature that evening, it was above 38°C, hence when I got in touch with the hospital they asked me to come in, as I'd likely picked-up some kind of infection and would need some antibiotics via IV.
I spent just short of a week in hospital being treated for the infection, which the blood cultures identified as Dermabacter Hominis. It was mostly treated with a course of the antibiotics Meropenem and Teicoplanin, but I was also on high-dose Amoxicillin for a day or two, until it was determined that particular antibiotic wasn't really needed.
Also, it turned-out that there were actually a couple of things going on, as the rash wasn't related to the infection. The rash was in all likelihood Graft Versus Host Disease (GVHD) of the skin, i.e. the donor's immune system was attacking my skin, as it looked foreign to it. Within a day or two, the rash spread from my lower legs and feet to cover a large percentage of my body (it was really only my head and upper back that were clear). The rash was really itchy at times, and was quite angry in places. It looked and felt a bit like severe sunburn; I was glowing red, there was a burning sensation, and the skin felt tight and was swollen in places too. You can get an idea of what it looked like from the photos below, but they don't quite capture its severity:
One of the doctors said that my skin GVHD would be classified as grade two, as it would have needed to cover my entire body for grade three, and blistered for grade four. I'd imagine grade four must be pretty uncomfortable, so I'm definitely glad that it didn't get that far. The treatment for the skin GVHD was mostly high-dose steroids, i.e. 60mg/day of Prednisolone; It appeared that the dose was calculated based on my weight, as I was prescribed 1mg/day for each kilogram of my weight. I was also prescribed Omeprazole to help my stomach with the side effects of the steroids.
As you might imagine for skin issues, I was also given several creams to help with easing the burning sensation etc. One such cream was Levomenthol, i.e. 2% Menthol in Aqueous cream, and it was actually quite amusing the first time that that cream was applied, as the nurse that pretty much covered me in it got a little carried away; As I was shivering from its cooling effect, she was practically passing out from the fumes. By the time the nurse finished, my eyes were watering, as I was like a giant polo mint!
Although it seemed to be a bit of a formality, it was still necessary to do a skin biopsy to confirm that the rash was indeed GVHD. The skin biopsy was performed by a doctor from the dermatology department, and really just involved removing an area of the skin (with a 5mm diameter) down to the fatty tissue (a few millimetres deep). This is achieved by first numbing the area with a local anaesthetic, followed by using what looks a bit like a pencil with a hollow, circular scalpel on the end to cut away the skin sample (it is simply rotated), and finally inserting a couple of stitches. It did bleed a bit at first, but it soon stopped once some pressure was applied with some cotton wool. For the next day or so, I needed to keep it covered with a dressing, and avoid getting it wet, but other than it stinging a little once the local anaesthetic wore off it was fine. Once I took the dressing off, a day or two later, I took the following photo of it:
Although being in hospital meant that I missed my consultation on day +110 to discuss the results of the bone marrow biopsy and PET-CT scan, not to mention the dental appointment on day +112 (I've had to rearrange that so many times now that it is starting to get embarrassing), it did have the advantage that I was seeing various doctors on a daily basis, so as soon as the results were back, they would be able to discuss them with me. Eventually, I found out that my bone marrow biopsy was clear, i.e. there was still no sign of cancer in my bone marrow, so that isn't the cause of my platelets continuing to remain pretty low since my allogeneic stem cell transplant, and my PET-CT scan was now negative, i.e. there were no longer any areas of higher than normal activity showing-up. All in all, things are looking good really; I just need my hemoglobin and platelet counts to improve, which hopefully they will do so given time.
Note: On the day of the skin biopsy (day +111), I actually had two units of red blood cells and two units of platelets, as I was feeling out-of-breath etc from my once again low hemaglobin count and the dermatology department don't like to proceed with a skin biopsy unless the patient's platelet level is above fifty (mine was in the twenties).
Going forward, the plan at the minute is really just to see how things proceed with my blood counts, whilst gradually reducing the dose of Prednisolone to find the right balance of sufficiently suppressing my new immune system to keep the skin GVHD under control without at the same time overly increasing my risk of picking-up infections. As of day +117, my dose of Prednisolone had been reduced to 50mg/day, and my next check-up is scheduled for day +123, when I will go through the usual review process again, as well as have another dose of the monthly Pentamidine. I'm hoping that by then the run-of-the-mill cold that I currently have will be gone too!
That really just leaves three final quick points: The chimerism blood test results are now somewhat academic, as the expectation is that after the recent run-in with skin GVHD, I will still be full chimerism; After a slightly embarrassing conversation with the receptionist at my dentist, I have rearranged my appointment yet again (for the 13th of June); and on the 9th of July I have an appointment with the consultant in charge of my case to discuss my progress, by which time I might have some of my stamina back!
Thank you again for taking the time to post on your blog-it is just so informative for anyone that might have to go through a similar experience that they can be somewhat prepared.
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