As my previous collection failed, it was decided I should undergo the ESHAPS chemo regime and then do two injections a day of growth factor before and during the second attempt.
Please be aware: this is my own individual experience. The way ESHAPS and the collection process are administered may be differently done for you. Always take advice from your own doctors.
I believe it was the first time ESHAPS had been tried at Northampton, as the administration of it was actually not quite understood and resulted in a longer stay than initially anticipated. However, this should mean that future patients will benefit from me being a guinea pig!
Firstly I had to be on a fluid drip all the time and this starts 24 hours before the chemo and continues 24 hours afterwards. So bloating up and weight gain is a side effect and I was put on diurectics after a day or so. All urine in and out has to be recorded, so I had to put a collecting bowl over the loo seat with my name on (as I was in a ward and other people were also doing this!). Tips here – leave a pen in the bathroom, don’t overfill, remind staff to collect them (if left too long they can start to seep) and put them where other patients can’t knock them. Also, take a a pad and pen and write down all fluids in and time taken (don’t forget milk on cereals). This will be really helpful to staff – cross out and put a line under recordings as staff note it down and leave it by the bed so they can do it at night. They do need to record if you vomit too (didn’t happen to me).
You will then have a second drip on the go too for the steroids and chemo – this means you must be very careful about wires and plugging and unplugging when you leave your bed and my experience is that if you stay unplugged for only a while, the pump batteries run down very quickly and take forever to recharge! I only walked away without unplugging once, and this loosened the wall plug without me noticing as I had an extension lead.
The regime employs steroids every day and three different chemos all 4 days. One chemo I only had on the first day. The others two were a one hour and a 19 hour. The times aren’t exact, as you have to allow for flush throughs and times when air bubbles get in the line and it beeps! Also, the drip times aren’t always exact. You can find a leaflet on ESHAPS on the Christie site (see links). The process on the leaflet isn’t quite the same as the one I had, but it does tell you the chemos used. There are leaflets on these too I seem to remember.
Get used to blood collections at ungodly hours in the morning (and my Hickman line was often reluctant to give blood so I would be having to breathe deeply and wave my arms about at 6.30am!). Observations and pills 4 times a day.
Make sure you manage your anti-sickness regime – it’s better to plan what you might need, as otherwise the nurses will only give you the basics. I had the two main anti-sickness ones morning and night (Ondansetron I think, which may not work well for everyone) and then asked for Domperidones in advance to take when I needed them (just tell staff what time you took them) and if I felt queasy I also sometimes asked for Cyclizine (sometimes around midday). There are injections available. It really did work at keeping nausea at bay, although I’m not a ‘sicky’ person generally and may just be lucky. However, I did have bad indigestion (have had it for years and this made it much worse) and a horrible taste in my mouth. I took my regular Omeprazole twice a day before meals and Gavescon in between if needed. I also had to take Fluconazole (anti thrush) and Allpurinol (anti-gout). I was also told I could stop taking Bonefos, as that can be a bit hard on the stomach, but seek advice first.
I was religious about brushing my teeth (gently with soft brush) after every meal and using mouthwash. I didn’t get a very bad mouth, although I did have some ulcers on my tongue by the time I went home, which I managed to get rid of with the mouthwash. However, the bad taste has remained – possibly due to my indigestion as much as anything or antibiotics – and today is the first day it seems marginally better.
On Sunday after a final 24 hours of fluids I went home. I didn’t feel too bad then. But Monday to Wed I felt really awful and I guess that the chemo and withdrawal from steroids really kicked in. Wed morning I felt very low and only started to ‘come round’ Wed late afternoonish. It’s hard to describe how I felt, but nauseated (despite having all the medication), tired and depressed just somehow doesn’t do justice to it! Was more or less in bed most of the time, although sleeping was difficult. Wasn’t helped by then having my strange red mark/lump appearing on the back of my leg on Wed (see posts) and the need for antibiotics for a week.
However, I did slowly start to pull round. It was salutary, as although I’ve felt bad before, it had never been quite that bad and I now realise that the transplant will be much worse. However, it also shows that it will pass!
From Tuesday I began 2 injections a day of growth factor and got pretty quick at it!
On Sunday I went to stay with my friends Chris and Paul. I couldn’t start the collection until Tuesday, as my chemo had run a day late. On Tuesday I went in, but my white cell count was too low to start, which was very disappointing and worrying as I was already a day down. Chris took me to Foxton Locks to cheer me up! On Wednesday my count had rocketed from 3.7 to just under 10 which was a sign of a surge! It was so much easier to gather with the Hickman line – no trouble and even quicker – less than 4 hours. But only 0.8 whatevers – don’t know units – were gathered and I was told I need 5 whatevers (for two transplants). So again disappointed. On Thur my count was up to 17. Sarah, the nurse, decided to use the Hickman line to extract the blood, but to put the return line into my arm in case the collection and return sites were too close and so the blood collected wasn’t ‘new’ enough. Also, I was put on the other machine. And by mid afternoon, I had a phone call saying 4.5 had been collected and I didn’t need to return. I’m sure my over-the-top reaction amused the nurse who rang, but I was so pleased I cried afterwards, which I haven’t done so far. I rang Northampton with the good news and Chris the nurse, has given me a provisional date of 5th Dec for the start of the transplant. There will of course be numerous tests etc before it goes ahead, but at least another hurdle has been crossed.
I guess that those people living near to stem cell collection centres can have more regular blood tests to track progress and make a better, more instant decision about when to start collecting, but obviously for those of us who have to travel, that decision may be trickier to make.
I hope anyway that this account, personal though it is, may help people going through the same process. Please do write and ask for clarification if you need to.