18 February to 18 April 2013 – Stem Cell Harvest & Maintenance (Cancer and Me 25)
I outlined in an earlier chapter the necessary steps for the stem cell harvest, so I shouldn’t need to go over them in detail again. Look back at that chapter if you need reminding!
The cyclophosphomide treatment to prime the stem cells (18 Feb) was pretty uneventful. It took just over half a day. We were in a nice private room in Southampton Hospital with a TV. And the Hickman line worked like a dream. No messing around with needles trying to cannulate. Just connect up and start the drip!
I was back to work the next day, feeling a little tired, maybe a little sick. But nothing major.
I was told that I would almost definitely lose my hair within 2-4 weeks… but I didn’t lose my hair at all. I know it sounds stupid, but it was quite a significant thing for me. Not because I’ve got a particular thing about my hair, but because it’s so visible. It’s almost like sudden baldness is a way of saying to the world, ‘Hey I’ve got cancer and I have to have chemotherapy!’ I’d been getting by at work without having to talk about my illness all the time, because when I was in the office I always looked pretty healthy. Noone would have known by looking at me that I was having cancer treatment. But once I was told that my hair was going to fall out I felt I had to warn people, so that it wouldn’t be a shock….
And then it didn’t happen! So that created even more of a talking point! But it felt like I’d drawn attention to myself, which is not my way! Even two months later people at work were still saying, “so your hair still hasn’t fallen out!” Why am I complaining anyway?! It’s been so cold that it’s been good having hair!
Anyway, the priming was on a Monday (25 Feb), and I was booked to start to the cell collection the following Monday. In between I had to inject myself twice a day with GCSF, which boosts white cell growth. That honestly sounds worse than it is. It’s not painful at all. The pinprick for the injection is a little tickle that sometimes aches a tiny bit afterwards! It’s just a case of mind over matter to make your hand prick yourself in your stomach fat with the needle.
I warned my bosses at work that the stem cell harvest could take a week, since I was told that can sometimes happen. So I cleared my diary and prudently prepared to be off for the week.
The reason it can take so long is that there is a certain number of cells required for a transplant. They do a blood test at the start that gives an indication whether they will be able to get enough. If not, you have to go home and have more GCSF injections and come back the next day. Then after the day’s harvesting is completed they send the cells to the lab and they check to see if there are enough. If not, you have to come back the next day to do the same again.
It’s a fascinating process: blood coming out of one end of the Hickman line, going into a centrifuge where the layer containing the stem cells is removed into a bag, and then going back into the other end of the Hickman line.
In practical terms, being the one connected to the machine is fairly tedious. I was fortunate that they collected more than double the number of cells they needed on day 1. But you literally sit on the bed, connected to the machine, all day – 5 hours. No moving around in that time, so if you need the toilet they have to bring you a commode – I was fortunate too that I didn’t need it!
One of my main issues was that if I turned or moved my head too much then the line under my skin pinched against my collarbone and reduced the flow of blood out to the machine. So I had to be fairly still and breathe evenly. That meant I couldn’t really have a sleep or get too animated in conversation!
The other thing I found was, as they warned me, I started to suffer mild calcium deficiency. That’s because the anti-coagulant, that they put in the blood as it goes through, uses up calcium. The symptoms are that you start to feel like you’re vibrating or a little numb. I initially thought it was the centrifuge humming and vibrating on the floor, but I was told it was actually my body having thousands of tiny muscle spasms from depletion of calcium. The nurses are pretty relaxed about this, and they just give you some calcium tablets – it’s such a common side effect that the tablets are kept in a cupboard next to the bed!
The nurses were great. Unusually I was the only one in the room, with the constant supervision of two nurses. Normally apparently there are two or three people having stem cell collection at any one time, especially on a Monday.
We chatted about all sorts of things. One of the things they talked about was the stem cell transplant itself – for me now a few years away. They described the isolation rooms that are used, and comforted me that it was nowhere near as grim as it sounds. The rooms have been built recently in Southampton Hospital, using feedback from patients. So, from what they said, they sound quite spacious, with nice en suite bathroom facilities. They have a TV and an exercise bike, free wifi and a music system. You’re allowed to bring anything you want for entertainment – Xbox, books, DVDs, and such like. So whilst I can still imagine getting a bit bored, with few visitors allowed, it doesn’t sound like a prison cell!!
Anyway, with the harvest done, I decided not to go straight back to work, but take a couple more days off just to rest and recover. Not that it was physically strenuous, but it had been an emotional drain.
Then after seeing the consultant a couple of weeks later, deciding to delay the transplant until the next relapse, and after having the Hickman line removed, I am now into maintenance mode. That means a day in hospital every two months for the next two years, to have Rituximab, and watching for signs that follicular lymphoma (or some transformation of it) has come back again.