Lisa Christie shares her stem cell transplant experience
Lisa Christie shares her experience of having a stem cell transplant in 2016, following her diagnosis with AML just before Christmas the previous year.
20 December 2015: I had my first two units of blood. I also got the diagnosis of acute myeloid leukaemia with trisomy 6.
21 December 2015: I started my first round of chemo (HIDAC3). Went pretty well, didn’t really have any symptoms yet. I had a fair bit of nausea and diarrhoea over Christmas though. It was an emotional time for me, because it was Jackson’s first Christmas and my 30th birthday on New Year’s Eve. I had lots of visitors which did help, but all I was doing was sleeping and walking around in a bubble.
29 December 2015: I had my first bad temperature. Started IV antibiotics for strep… continued on the IV antis, kept having temps on and off. My sister also shaved all my hair off, it was falling out anyway.
4 January 2016: I had my first bad allergic reaction to Stemetil. It was horrible! It was this uncontrollable neck flexion and blurred vision… really scary!
At around this time Professor Grigg (or the Silver Fox as my sister called him haha!) had explained to me that I needed a stem cell transplant. I was not happy about this. Later on I realised it was the best treatment for me. But at the time I was really scared. I looked up the protocol on the hospital portal (which I shouldn’t have). The doctors told me off for doing that. Lol. I soon realised all the data was based on older people, not someone in their 30s. Anyway, both my sisters got tested to see if they could donate their stem cells to me, unfortunately they were not a match. So began the search for an unrelated donor.
11 January 2016: Day 23 post starting the HIDAC and my neutrophils were finally increasing! 0.1.
18 January 2016: My neutrophils were 0.5 and I was allowed to go home for a few days! A month after starting chemo.
27 January 2016: Readmitted for first cycle of consolidation little-ICE chemo.
2 February 2016: Discharged, seemed like a really short admission compared to the first one! But the chemo really hit my bone marrow, the doctors would soon find out.
8 February 2016: Back in for neutropenia. Had more temps, so more IV antis started. Lots of blood and platelets transfused during this admission. I also had really bad bottom pain! That was actually my worst side-effect of my whole stay in hospital. I didn’t vomit once, just constant diarrhoea! It does get better as soon as your counts start rising.
16 February 2016: DISCHARGED!
26 February 2016: Came in for a routine bone marrow biopsy, which showed I had really low neuts, Hb and platelets so had to get readmitted, which I was very annoyed about. They realised they needed to find a donor pretty quickly then. I was given two units of blood for a Hb of 77 and the following day it had actually decreased to 75! So, my marrow was struggling. In the meantime, I had more blood and platelets transfused and started the pre-transplant tests… gated pool study, chest CT, respiratory function test, a million blood tests, counselling, dental X-ray.
8 March 2016: Hickman line was inserted in preparation for stem cell transplantation and they discharged me home on a special injection (G-CSF) to keep all my counts up. They had more importantly found an unrelated male donor in Melbourne!
13 March 2016: Admitted to D8, pre-stem cell transplant (SCT).
14 March 2016: Started pre-SCT chemo. The first one was fludarabine. I also had a couple of bags of platelets and one unit of blood.
16 March 2016: Diarrhoea started, but still no vomiting.
18 March 2016: Had thymoglobulin (helps reduce graft versus host disease) and melphalan (chemo) transfused.
20 March 2016: Cyclosporine commenced (anti-rejection drug).
21 March 2016: Finally, the day of the SCT (which is also our son’s 1st birthday!) so we had a little party for him in the morning… in the bubble. And then later that night I was given pre-meds (maxalon and promethazine.) I had a little reaction to the maxalon, which caused agitation. I remember pacing the room but feeling drowsy from the promethazine at the same time. The actual stem cell transfusion was just like any other transfusion… I didn’t feel anything.
22 March 2016: Was feeling pretty good. Just put on some extra fluid, which is normal… I had a little bit of Lasix to get the fluid off. Had a couple more units of blood.
23 March 2016: Sleeping A LOT but still having a shower every day and walking around the bubble. Not eating much at all. On IV antibiotics.
27 March 2016: Still having ongoing chemotherapy (methotrexate) after sucking on ice. Sucking on ice really helps stop mouth sores!
28 March 2016: Started TPN** today because I couldn’t eat or drink much. More because I was so tired. I only had mild nausea, but nothing too bad. Not much else happened after the SCT. Had bloods and platelets transfused nearly daily. Remained on the TPN because I didn’t feel like eating or drinking much. The cyclosporine was also a constant transfusion. I also stayed on IV antis most of the time. My biggest problem was still bottom pain, it was so annoying! But at least I wasn’t vomiting. I showered every day and walked around the bubble. I wish I was watching Netflix, but I didn’t really know how it worked at that stage. So I was reading and watching daytime TV.
A lot of other patients I saw were on fentanyl patient-controlled analgesia (PCA) for mouth pain. I was lucky enough to not have many ulcers, so I didn’t require that. But don’t hesitate to ask for a PCA if you have pain. Keep up the mouth washes as often as you can!
5 April 2016: Donor cells started to engraft! 0.1 neutrophils.
9 April 2016: Discharged home!
On discharge, I was on loads of drugs, but they gradually start decreasing so don’t worry. I was also having ongoing diarrhoea but that also started getting better as the drugs got weaned off. I went to day oncology as an outpatient Mon/Wed/Fri for a few weeks.
24 May 2016: My Hickman line was removed and we started getting back to normal life. We did spend a lot of time in Shepparton at my Mum’s house, just to help out with Jackson. Anthony was also working so it was boring at home.
So, in summary, the actual SCT wasn’t as bad as I thought. I was just super tired and couldn’t eat or drink much. I didn’t really get any bad temps with it either. I think my first round of chemo was harder to deal with to be honest. Just keep walking, showering and try and stay positive. Suck on ice before chemo and keep up rinsing your mouth. My transplant was three years ago now, so I’m sure they have improved on everything by now!
* A Hickman line is a central venous catheter.
** Total parenteral nutrition (TPN) supplies all daily nutritional requirements.