In one of my previous columns, I promised to describe in more detail the days and weeks immediately following my stem cell transplant. I have read many accounts in The Beacon of this critical period in the transplant process. Everyone has to endure the ups and downs of recovery and the drawn-out wait for the bone marrow to start producing all the blood cells that we need. It seems that this time is different for every multiple myeloma patient.

I can vividly remember the moment when the pink bag of stem cells arrived in my hospital room. I felt quite terrified trying to imagine what lay ahead. The doctors and nurses had explained what would happen, but still, to me, that little pink bag held a host of wonders.

It took two days to return all my stem cells, and apart from feeling fairly nauseous and tired, it went well. I was told that my room smelled of burnt corn, but, thankfully, I was oblivious to that.

In the following days, all my blood counts were closely monitored, and it seemed to me as if I had virtually no blood cells circulating at all. I had various transfusions of red blood cells and platelets, and after several more days, my new cells began to appear. My husband and I were excited and delighted. It did, and still does, seem somewhat miraculous.

Then around Day 7 there was quite a large increase in white blood cell count. We thought this was good news, but the doctor was concerned. It seemed that this increase in white blood cells was too fast, and at the same time I developed a fever and a red rash. Luckily, the fever was not associated with an infection.

However, the high white blood cell counts and other blood results indicated that I was developing engraft­ment syndrome. This condition has to be treated hastily as it can lead to very serious lung issues, and my lungs already had been damaged by multiple myeloma.

During the following days I had a fever, low blood oxygen levels, biochemistry all over the place, and was not exactly on top form!

I have a bit more understanding of engraftment syndrome now. It appears to be more common in post-menopausal women who receive granulocyte colony-stimulating factor (GCSF) drugs such as Neupogen (filgrastim) after a stem cell transplant, which I did. GCSF drugs can create a very rapid rise in white blood cell counts, which in turn can cause a pseudo graft-versus-host reaction, in which the new white blood cells start to “attack” body tissues, particularly the gut, skin, and lungs.

Engraftment syndrome is treated with steroids, which slow down the engraftment process and therefore the proliferation engine.

Luckily for me, things settled down after a week or so, and my new cells began to behave in a more con­trolled way. Unfortunately, I had a long period of steroids and all the horrible things that they bring. I sometimes feel that I could write a book entitled, “All the things I hate about pred­nisolone and dexa­metha­sone.”

In the next few months, I managed to reduce the steroids, and my recovery continued. However, I did have two further episodes of this high fever without an infection, one of which required a return to the hospital and time in a high dependence unit. My doctor thought that this was a further engraftment reaction. Again, my memory of this period is a bit fuzzy, but my recollection of life back on high doses of steroids is not. I found having no hair and a face like a swollen balloon quite challenging.

But I know that I ought not to complain as here I am telling the tale, robust and strong, and hopefully ready for the next challenge. I am not sure how common this type of response is and how many other Myeloma Beacon readers have experienced these sorts of reactions.

My new immune system is certainly different from my old one, and I wonder if it is related to these events. Nowadays I seem to react very strongly to anything new that comes my way. An infection, an insect bite, or even a food that I have not eaten since the transplant can cause a very vigorous and dramatic reaction. My doctor is not overly concerned about it and thinks it might be a good sign, as my immune system might also be ‘gobbling up’ myeloma cells. He described my immune system as ‘over enthusiastic,’ which I think sums it up rather well. Not sure if that counts as an example of every cloud having a silver lining!

Gone is the old Marjorie. In days gone by, my friends and family often referred to my goat-like constitution! I could eat or drink anything in any corner of the globe and appeared to be impervious to infections.

Ah well, a small price to pay!