[mickackParticipant]

HI..ime 50 diagnosed Oct 2013.

After my second autologous stem cell transplant Christmas 2016 I now have to consider a allogeneic transplant…my siblings don’t match so will have to find a match from a doner from the database….

Please can anyone who has had this transplant give me honest feedback on how it went for them…need the good bad and ugly so I can make an informed choice as wether I go for the transplant or not…I have a realistic outlook on this cancer so any feedback ref transtplant from anyone who has gone through it would be very welcome

Many thanks

Mick

[scottParticipant]

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.

[greg777Participant]

Hi Mick,

I had an allo in Feb 2016, after an auto in Oct 2015. I was 36 when diagnosed so I think they advised it for me given my relatively young age. I don’t think I was high risk.

I echo everything Scott says. The transplant itself was pretty much identical. The big difference was the post-transplant experience. I got graft vs host disease of the skin, liver and gut. I got re-admitted to hospital around Day 50 and spent 7 weeks in, 4 of which I was fed through a tube. It was horrible, I thought I was going to die and at the time I massively regretted doing the transplant because I was pretty well before doing it. I was poorly for about 8 months post-transplant then the bloods kicked in. I am now past one year and feel back to my normal self. The whole experience has left me with pretty bad anxiety though.

So my advice is you have got to really take the time to decide what is right for you. Some people I went through the process with on another forum are no longer with us so it is a serious choice and they are not here to give you their opinions. But I decided to go for it because I wanted the chance to stay alive for the longest period I could. And I figured this was my best chance.

Wishing you the very best and as Scott says please ask away. I want to help others facing such a tough decision as much as I can.

Greg

[mickackParticipant]

First of all thank you both so much for sharing your personal experiences with me..it means a lot believe me as these are the things I need to know from people who have actually been through it for real..not just script and verse from consultants (fantastic as they are) who have told me the pros and cons from the stem cell transplant manual 🙂

I had a fairly bad experience in hospital over christmas while having my second stem cell transplant as I was in isolation for 2 weeks and was poorly from the chemo and various other side effects.. . so I just feel very anxious at the thought of spending a long period of time in hospital..with the real risks posed by this nxt treatment…its all I have thought about over the last 2 months as its going to be one of the biggest decision of my life so far..i know i should be enjoying this remission instead of thinking about how i am going to be made poorly in hospital again….I go back to see my consultant at the end of March so they can discuss further my nxt plan of action which in their eyes is the transplant ..I lnow they have to do it before the myeloma comes back but i feel really pressured to make my decision.. i feel as if I am on a production line..and to be honest would just like a little time to feel in control of my life again..I know this might be asking a lot of my unwelcome guest myeloma and i know i have lived longer than others…for which i am truely grateful. .

we are all individual and i know the pros and cons…but this next treatment will be a real test ..as you both know already

Thank you both so very much for your help. Believe me it gives me a better insight and will help me in making my final decision ..it is going to be my choice in the end I know..I will let you know what I decide

Take care and thank you

Mick

[scottParticipant]

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.

[mickackParticipant]

Thanks scott your advice and knowledge of the allo is very helpful to me… the more info I get the better so I can make my choice…no mini allo was mentioned to me at my last meeting in January with my consultants so I will defiantly be asking about that …saying that they only have half an hour to tell me the worst of what can go wrong and give me the allo book to get info myself..like I said to consultant she wouldn’t make any commission selling the allo product haha…so that’s why I am finding out as much as I can before my next appointment at end of this month. When was your allo scott? As we all know its all about the remission time :

Thanks for the info…

mick

[greg777Participant]

Hi Mick,

If it helps, my consultant showed me a graph before I decided which compared remission times between those who have an allo and those who don’t (I wish I could remember the source). Basically, this showed that by doing an allo (rather than not), you were more likely to die in the next 2 years – either through graft failure, complications of the transplant, GvHD, progression of the disease, etc. Then there was a period where people relapsed in much the same way as they would if they had just had an auto. But then there was a flattening out of the “allo” line after about 7 years, where there was strong evidence to suggest that myeloma does not come back if you get to that stage (I think it was for about 20% of patients who do the allo from memory). My consultant was pretty blunt and said something like, “If you want to feel well for the next couple of years, don’t do the allo.” But there was always that carrot that said this might give you a very long-term remission and at 36 years old, I thought it was worth the gamble (and I use that word because it definitely felt like that when I decided to do it).

I wish I could make the decision more easy – but I just don’t think it is possible. It is such a personal decision that I think you have to come to your own decision with what feels right for you.

But I am wishing you all the very best with it. I remember how tough it was to decide what to do.

Greg

[mickackParticipant]

Thanks Greg. ..Every bit of info helps me..my consultant said the same to be honest and the letter she wrote to my g.p of which I received a copy basically said what you have said..she highlighted quality of life rather than remission time.but there again they have to give us worst case scenarios . ..I know i have been very lucky with my remission compared with others and it just proves how individual myeloma is and that the final choice is also individual. .I have wondered why I got this at 47 while others got it at 70 and felt very cheated out of years… but you were 36 when diagnosed!!..so yes it’s all about living longer and we all want to do anything to get more years but it’s such a massive decision I know…I have just went along with what they said I should do in the past ..But my last stay in hospital kicked my backside 🙂 and I felt really vulnerable and scared of what was going into my body..I just feel the next step might be a step to far…They keep saying I am young enough to have the treatment but I know my body is starting to tell me ime not as young as they say I am haha…

Let’s hope and pray they get these new less harsh treatments they keep telling us about that are being worked on out to us as quick as possible …Ime really pleased you have got to a point where you have some normality in your life now Greg. .and long may it continue for you.. and all of us on this rocky road

Thanks Greg

Mick

[claireroe50Participant]

Hi mick i asked about mini allo but would be full one
But did say that would prob find the treatment not as hard as auto which is what scott said but the recovery period much longer. But haven.t gone through any graphs i took it that would be in my best interest that had it and in long term for the best but a do worry as have said before.as you say its such a difficult and individual decision isnt it. but reading peoples stories helps us hopefully.claire

[mickackParticipant]

Hi claire..The mini allo sounds okay to me…well better than full 🙂 …claire it took me a full month when I got home to get the second hospitalization out of my mind. Think because I caught a cold/virus in there and was given penicillin that literally within a minute my body showed me and the nurse who administered it that I was allergic to penicillin!!..haha ..should have seen her face bless her as my face went bright red and ballooned with spots on .my full body was like that …so uncomfortable for about 3 days of the second week.. .I think i can laugh about it now but i didn’t then…”allergic to hospitals” I think should go in my notes from now 🙂

Good info from Scott about the milkshakes as I really struggled with eating food and the DLIs. I will ask about all this new info

…sounds like I am complaining but spending 6 weeks minimum in isolation would be difficult for me and that’s if everything does go to plan…so these are the things I have to weight up..It’s about wellbeing of the mind as well as the body for me..”decisions decisions” I was having a cuppa with a pal today and he couldn’t make his mind up on what to have…He said decisions decisions …I just took a deep breath and smiled …

 

 

[mickackParticipant]

Hi all..

Quick update…consultants took the decision away from me last month and said the allo would not be in my best interests to put me through it ..they just gonna let my remission run and then see what happens…to be honest Iam really pleased…

Thanks for your info it really helped . peace and good fortune to you all

Mick

[greg777Participant]

Hi Mick,

Thanks for the update. I’m really pleased you are happy with the way forward. I think that’s probably one of the most important things in all this.

Wishing you peace and good fortune too on the journey ahead.

Greg

[mickackParticipant]

Thanks Gregg

☺👍

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