Last transplant Christmas 2016, I’m not surprised you feel anxious. My memory of isolation is perhaps very similar to yours, and out of everything that was one of the real challenges.
Just a thought about the chemo treatment, the allo chemo is very different to auto treatment, which is a bit like a hammer going through a pane of glass – nothing subtle about it is there. If you would be going for a mini allo (less risk), which seems to be more common than the full allo, the treatment regime is more gentle, there is more of it, but it isn’t so hard hitting.
I didn’t get mouth ulcers with allo, thank goodness, and I did feel somewhat better all round through the process. I did go off food at about the 6 day mark, much like the 2 auto’s, and didn’t eat for about a week, but you know the old hand that you are :-), you probabaly know there are various milk shakes packed with calories that make such a difference. As soon as I felt myself going off food I asked for the shakes, and pushed it to get them down me every day. It helped with energy and well being.
The isolation was a biggie, no doubt about it, and I was a long way from home so didn’t have many visitors. I felt down sometimes, lost other times, truly depressed some times, how people appear so pepped up and happy on their transplant blogs I don’t know, must be a trick of the camera…..It is a long haul, but definately do able.
I was thinking about your post over the weekend, and I remembered the allo Facebook group, I am no longer a member, but for the time I was going through it, I was and it helped me alot – it is a UK based group set up by a lady going by the name of Jet. Worth a look.
Has your consultant talked to you about DLI’s? A really useful part of the allo is the donor lymphocite infusions, can be given after transplant as a top up, and can be held in deep freeze for years afterwards. Consultant told me they can ‘do much more with me’ after an allo should myeloma come back, different drugs, DLI’s, it can be a game changer.
Of course, I am perhaps quite biased towards treatment at this point, it is not an easy road to travel, and I wanted to add a few bits of info I have remembered. Hope it gives you food for thought.
Scott.
Hi Mick,
I don’t come on this forum very often, and I drifted in today and read your post.
Here goes with my experience……I’m 49 now, had tandem transplants in 2015 – so auto then mini allo, unrelated donor.
First thing that comes to mind is that to have the best chance of success the myeloma load needs to be as low as possible, meaning have an allo before myeloma comes back.
Pre transplant is a bit more complicated as anti rejection drugs are administered alongside the chemo, and maybe radiotherapy for good measure. That takes up a week and bit in hospital prior to day zero. It is not so bad, and no isolation, I was allowed out of hospital grounds, as long as I came back!
Post transplant is a long haul compared to auto, 4 weeks I waited for counts to start to come up. some people take longer, 6, 7 weeks I was told. Same chemo symptoms, same problems.
When you do get home, it is back for checks once a week, for months, so be prepared for plenty of travelling to and fro and waiting around. Stacks of drugs to take initially, many are tapered off over the months, leaving a fairly easy regime. Just penicillin twice a day now, for life.
Getting well again….it takes longer for your counts to come up, some cells take a year or more and you are likely to be prone to infection in the meantime. Tiredness is an issue for a few months, expect to not work for about a year, not full time anyway.
Have to have all the immunisations again, from scratch, so a good few visits to the Doctors.
On the plus side, I’m doing really well now, myeloma for me had genetic abnormalities, which meant it would likely come back sooner rather than later, and I’m all clear right now, on 6 weeks hospital visits without too much of a hassle. Went back to work last year, changed career path, am now a gardener so lots of hard work. Was tough getting strong again, took last year, I’m good now.
Downsides – risk of course, stats say 20% don’t make it, for more…. allo fails. Memory takes a real hit after 2 transplants – takes 18 months or so come back with any sort of confidence. My mood was up and down for a year or so, all I seemed to be was a cancer patient, and I found it really tough. It did lift once I saw I was ok and my energy levels increased again.
I’m sure there is more to say, can’t think of anything right now. Do ask if you want more info, or an opinion, or anything……
Scott.
Hi Val,
Have had 2 auto SCT’s and 1 allo SCT, always had cats at home. My ex has dogs and always have been around them when I go pick the kids up.
Advice I was given was to not clean out litter trays, if animals lick my hands, to go and wash them with anti bacterial hand wash. Keeping the house well vacuumed helps prevent fluff build up, that was it for me, haven’t had any troubles.
Hope that helps,
Scott.
I tried it when first diagnosed, didn’t make the slightest difference.
I read and read about supplements and we are some 3 1/2 years later and post transplant and I have a view…..
As I understand it, curcumin isn’t a fast acting supplement, it could take a year or more to have any effect. So many of us that have tried it would never see a benefit as conventional treatment would have to be used sooner than any possible curcumin effect.
There is a case study floating about on the Internet from an american man who uses supplements alone to maintain myeloma, he goes by the name of TAB. If you look at his data, see the link below, it took years to get under control.
http://margaret.healthblogs.org/good-or-bad-for-myeloma/smoldering-for-14-years-tabs-story/
Hi Wendy,
I don't post very often here….I have had the same dilemma put to me. I'm post autologous transplant, nearly 4 months and counting. Two consultants at a specialist cancer hospital talked to me about mini allo transplants. There point was that as I was so young, I'm 43, it may be another option to prolong life.
I read a good deal, and my opinion was that is was much more risky, and I didn't really want to chance it at this stage. I spoke to my own hospital nurses and consultant and they consider it too much of a risk, again at this stage. They told me about another man, about 5 years younger than me, fit and healthy, a fireman actually that wanted to go the mini allo route after autologous transplant, They advised against it, and he went ahead anyway, considering it may be a 'cure'. It didn't go too well, he takes other drugs now as his immune system is not too great, and worst news of all for him is that he has come out of remission.
I should say that the nurses told me that it can be a success, and for people that don't have any other options it is a risk worth taking, but for those of us that do, it is maybe best to wait, and enjoy life.
That is my own view too, hope that helps
Scott.
Thankyou all for the welcome, I'm still reading lots lol and if anyone wants a few myeloma journals to read, just drop me a line 🙂
I had a shock last week at my latest appointment, haemoglobin 11.6, IgA up to 30.9 from 24.0 in a month. Whoops…here we go I thought.
The consultant wanted to start me on treatment and I said no – have you ever been in a conversation that is so charged you really don't know what will happen next – it was one of those. Bottom line is that I don't feel ready and as many people have more extreme results, I am waiting and having a good chat with my curcumin bottle!
The front line treatment is CTD as yours is Debs, I think it is the UK standard now. I will be reading your experience with interest as I think I will be going that route sooner or later.
Best wishes to you all
Scott.
