Not quite the start of my transplant

Well today was the start of my stem cell extraction, or so I thought…

We arrived at Liverpool hospital at about ten o’clock. I had all of the paper work I needed from my last visit to get the various blood tests that I needed. So upon arrival we went straight to haematology. They work on a ticket basis – the number on the screen was about 38 so I took my ticket … number 80, the place was full, although there were about 6 staff doing blood tests. My number finally came up (for my blood tests that is) the nurse I had was new and while she was preparing the tubes for the blood, she broke two of them, not a good start. There were six viles that they had to fill with blood as there were a number of test that they have to do in preparation for the transplant. As she was doing the fourth one, she called over another nurse and explained that the needle had come out. The other nurse took over and I had to have the blood taken from the other arm for the rest of the tests. So I finally got my blood tests done at 11am with a plaster on both arms.

I got to my appointment just after 11, it is around the corner at what is called G-Clinic. I was supposed to be there at 10:30 but it wasn’t a problem. We had to wait until about 12:30 before we got in to see the consultant and Edwina the bone marrow coordinator.

They first discussed the possibility of being part of clinical trial called PHANTASTIC (Plerixafor Harvesting And No chemotherapy for Transplantation of Autologous STem cells In Cancer)  This one is real – I really couldn’t make this one up! It is a trial that uses and extraction process that doesn’t use Chemotherapy. However I decided not to take it for two reasons. The first is that I would still need to have high dose chemo during the infusion process and my hair wall fall out during this process. I personally would rather deal with this at home prior to my stay in hospital and dealing with all the other things that have to go with the infusion part of the transplant. The second reason is that with it being a trial  I couldn’t be sure of the side effects and possible long term effects. So for me I’d rather stick with what is known, rather than be part of something very new, at least at the moment anyway.

I only received information about the above in the post a couple of days ago, but during the conversation it became clear that I wasn’t starting the extraction process today. I’m not sure where the confusion came in, but it turns out that I will be starting the process on the 23 May.

The schedule is:

23 May (Sunday) – Commence Allopurinol and Ondanesetron and drink plenty of fluid (at least 2 ltrs of water)

24 May (Monday) -  Chemotherapy (Cyclophosphomide) intravenously along with anti sickness drugs Ondanesetron and Mesna

25 May (Tuesday) - Allopurinol and Ondanesetron and 2 – 3 litres of fluid

26 May (Wednessday)  - Nothing today

27 May (Thursday) – Nothing today

28 May (Friday) – Commence Growth Factor Injections. Two injections a day. The G-Factor along with the Chemo releases the Stem cells into the blood stream.

29 May (Saturday) – G-Factor injections

30 May (Sunday) – G-Factor injections

31 May (Bank holiday Monday) – G-Factor injections

1 June (Tuesday) – Attend Bone Marrow Transplant Unit at 9am for full blood count. If there are enough stem cells released into the blood stream discovered during this test, they will commence the extraction process on this day, otherwise more G-Factor injections will be issued and monitored on a daily basis until the blood contains the correct amount necessary for the extraction. It was explained to me that a good sign of the correct amount being released is the amount of bone pain that I will be feeling. It will be quite painful during the stem cells being released into the blood stream.

The extraction process will involve having two tubes attached, one in each arm. One for the blood to go out in one arm and the other to go in, in the other arm. The blood will pass through a machine and the stem cells extracted and the blood returned to my body. Any surplus stem cells not required for this transplant will be stored for the next time. Hopefully that wont be too soon, but they did say that normally they only manage to get enough for one transplant.

The infusion process to put the stem cells back in again, will commence approximately four weeks after the extraction. Which means I will be in hospital in isolation during the month of June.

One other thing that happened whilst there …. I was collecting the prescription for my injections and anti sickness drugs and discussing the above with Charito and mentioned that I would be in Hospital during the summer in June, when I woman behind me said ‘snap! I will be in for the month of June as well’ – She is in for a stem cell transplant as well. It turns out that she has myeloma as well and she is from Hawrden and attends Chester the same as me. She was diagnosed in September but different symptoms to myself. I had a good chat with her and her husband and it was nice to finally meet someone who has myeloma the same as me.

So although I didn’t start my transplant process today and I have to have the same apprehension and waiting for another couple of weeks I have at least learned a bit more about the process and know exactly what is going to happen. I also have the added benefit of not being in hospital or feeling sick when Amy has her baby, which should be next Thursday. So on the good side I have another couple of weeks of generally feeling ok before a fair few months being unwell.