This is a fairly personal piece of writing. Just be aware as all patients and their myeloma are different, and they have their transplants at different centres, it is impossible to predict how your own transplant will go and what side effects etc you will get, or indeed whether you will achieve a good remission or not.
You can only ask as many questions as possible of your team, but even they will not be able to guarantee anything.
It is worth asking how many transplants they do, how long they have done them for and (though they might not tell you) for any statistical outcomes. It’s also worth asking if you can see the facilities – we got shown the unit.
https://be.macmillan.org.uk/be/p-18791-understanding-donor-stem-cell-allogeneic-transplants.aspx has questions to ask your team in it.
https://www.anthonynolan.org/patients-and-families/order-or-download-publications a whole range of publications. I was given the Seven Steps and the Next Steps. They are quite scary to read, especially the Next Steps one, as they go into what can go wrong, so you may want to stick with the Macmillan one. However, if you want the full picture then you should take a deep breath and read them. They were written for people with leukaemia etc originally, but the process is the same.
http://myeloma.edweb.co.uk/ This is my blog which you are on now! I covered much of my allo on it, although not every day. You’ll have to go back to July 2014 for the start (go to the bottom and click previous page until you get there) and then ofc it works from the bottom upwards, which is a bit of a nuisance!
The following are some (fairly random) points based on my own experience at Leicester, which, when I was there, was doing quite a lot of transplants, had a good record and a nice unit. I have read back over my blog and to be honest, find that I can’t remember all the stuff I wrote about.
My husband and I had a lengthy session with the Leicester consultant, when she went through a lot of stuff. I took notes and my husband recorded it on his phone too. She is very blunt and did not hide anything from us. Later we went up from Northampton and got more info. It’s hard to think of everything to ask, but they were very good.
You will have a huge battery of tests beforehand – more than I remember from the SCT.
My donor was unrelated and a different sex, so not a perfect match. He was in fact a German guy aged 26!
My first donor fell through (presumably did not pass the medical) and as my levels were pretty uncontrollable by then, I went into my transplant with myeloma levels higher than they should have been, which might account for the fact I only got a year’s remission. Might well be better for you – some people do brilliantly well and are in remission for ages.
Even for me the transplant was very valuable as it sort of ‘reset’ me and stopped the levels shooting up. It really was my last chance at that stage.
While there are similarities between the SCT and the allo, I found the side effects, both physical and mental more severe.
I was told it would be much better if I had a feeding stomach tube put in, to keep up my weight. This helps with infections and also when you can’t eat (I had lost a stone after my SCT). I did agree and it certainly did keep up my weight and relieve pressure on me as although I am never actually sick, I did have very severe nausea and really didn’t want to eat much for quite a while. The only thing I would say, is that I think afterwards it may have contributed to my infections. It seems too much of a coincidence that after I stopped using it they stopped too. The actual insertion and removal aren’t that pleasant, but it’s quick and I had sedation. I never really got the hang of working out how to programme the pump, but luckily my husband did and heroically changed my bags in the night too!
If you don’t have a feeding bag they will try everything they can to make you eat or to take those disgusting supplements.
The conditioning treatment (chemo before the cells go in) is longer and does really knock you out a bit. I had no issues with the cells going back in.
You will be on a lot of drugs and some of them have unpleasant side effects. One of the main ones made me amazingly hirsute – I had a moustache, beard and sideburns for a while!
The main danger is Graft Versus Host Disease (GVHD). You need to read about this. It affects some people much more than others. The irony is that it does help to fight the disease, although not quite as much for myeloma as other blood cancers. In my case I developed huge pustules over my face and neck and a few elsewhere – looked as if I had the plague. Most people get some on their skin. I was given steroid cream to deal with it and it eventually went. My skin also shed flakes for ages and I still have to cream it. I also had a bit in my bowel, but not much and I suspect it affected my eyes, mouth and joints and probably my vagina, but the meds can do that too. However, GVHD can be very acute and some people spend time in intensive care with it. Others have it chronically and it can affect quality of life for years. You have to take the risk of this on board when you have an allo.
I did have mental problems – depression and anxiety. Throughout most of my treatment over nearly 10 years I have not experienced this before or since. I am pretty pragmatic about treatments. I do think some of the drugs can and did cause this, including the zopiclone I was given to help me sleep. I was given diazepam and citalopram and did come out of it. I think they didn’t really know how to deal with it at the time – they tend to focus on the physical side of things.
One problem is being stuck in a room and not feeling well enough to do much – for quite a while I couldn’t concentrate on anything, including reading and TV. Later I learned to try and exercise – just walking up and down a lot helped. I also skyped the family.
You do get very weak – I could hardly get up the stairs when I got home. So every day I did walking, firstly just pacing round the house, then just up and down our close etc.
You need to have good support from carers if at all possible. It can be very scary for them, seeing you so ill, so they need to be warned. Also, there were days I really couldn’t cope with visitors very well, so I asked for them not to come, rather than drive all the way up to see me after work for maybe 20 mins or so. If you have no one at home, I would think you should arrange for some help, maybe through your GP. You would need to arrange hospital transport. There are a lot of follow up visits and the strong probability of several infections afterwards and more stays in hospital.
I think allos are an order of magnitude more difficult than SCTs – I was out after three weeks with that, had one short infection and recovered fairly well. If you go for the allo, then you need to be prepared for the long haul. However, if it works, then it could give some extra years you might not otherwise have. They are doable – and most centres are very experienced.
If you have any specific questions, do get in touch. My email address is firstname.lastname@example.org.