Hi Beth,
i noticed no-one has replied to your post so I just wanted to say I hope your father is doing as well as he can and that you have more information regarding what he is facing. I have learned over the past couple of years that myeloma can present in lots of different ways and can be a very individual disease (sorry I have not personally come across the lower abdomen pains). My advice would be to follow the lead of your father’s medical team as they will know what is best for him. And try not to read too much into Dr Google as it can sometimes be unhelpful. But please use forums like this, whilst myeloma can be an individual disease there are lots of lovely people on here who have or are currently experiencing what you are going through, so please use it as much as you need.
All the best,
Greg
Hi Helen,
i think mobility and pain does get better when the myeloma has been put back in its box. I presented with a large blood clot in my leg and over time it definitely got better such that it is to all intents and purposes back to normal. I also had a collapsed vertebrae in my back and now I hardly notice that either. I suppose it stands to reason if you can get rid of what is causing the problem, things started returning to the state they were in beforehand.
I am based virtually the other end of the country so I haven’t been to the Beatson – but I have heard good things about it.
Wishing you and your husband all the very best,
Greg
Re putting them back in, it is just the same as a blood transfusion – very straightforward and not painful at all – that’s why I thought it was anticlimactic- but very significant nonetheless
Hi Sabs,
re: the harvesting, I suppose it depends how squeamish you are. Basically one needle goes in one arm, extracts the blood, takes it to this machine where it is spun really quickly then it goes back to a needle in your other arm. So you are sat there all day with a needle in both arms. I wouldn’t say it was painful, but I hated it more than the biopsy because I hate the sight of blood (ironic to get a blood cancer!) so I was sat there trying not to look at it all day. I didn’t mind the biopsies so much as from a patient’s perspective you can’t see what they are doing to you!
I felt a bit woozy straight after the harvesting but I was fine by the next morning.
All the best,
Greg
Hi Sabs,
It depends on the regime and the type of transplant but normally you’ll get a few days of conditioning treatment before the day the cells go in (Day 0), then it is a waiting game. Treatment itself is short and anti-climatic – not what I expected from a “transplant” – a lot of the time boredom is the toughest part – but the chemo does leave you weak so sleep is also very common during those few weeks.
All the very best,
Greg
Hi Susie,
Definitely best to check with your medical team to see if what you are experiencing is normal. I know long term steroid use can cause muscle wasting but this generally doesn’t happen unless it is used long term. After months of prednisolone use I couldn’t walk up the stairs and from being a relatively fit 36 year old it was quite a big change – but I must have been on high doses and was on it for nearly 6 months. And it did all get better again when I came off the drug. I only had melphalan as part of conditioning for SCT. Made me very sick but it was short lived – I didn’t get any long term effects. But definitely check out with your medical team and see what they think.
wishing you the very best,
Greg
Hi Susie,
Definitely mention the anxiety to your team, they should be aware of the mood impact of that drug. I had dex too but prednisolone was another beast entirely for me. It got better as I was being tapered off it so I think lower doses are probably better from a mood point of view so definitely talk through any concerns you have with them. I suppose it is a balancing act with giving you the best possible treatment – and I did manage to ride the rough patches out.
Please keep us updated as to how you get on.
Greg
Hi Susie,
I had high doses of prednisolone after I had problems with acute GvHD after allogeneic SCT. I can’t remember the doses but it was via IV so I am thinking it was pretty high. I think it is a pretty effective drug but watch out for moods – I had some of the scariest emotions I have had whilst on that drug. I am sure the medical team will be aware of that but please look after yourself.
Wishing you all the very best,
Greg
Hi Pamm,
Glad my post was of some use. I think your approach is right – focus on the first SCT – that’s what I did. To a large extent the best thing to do is take one step at a time. Re:medication, I am lucky that I am now only taking 2 tablets a day – for penicillin, which is for life after an allo, so it really is no bother. At its worst, I think I was on about 20-30 tablets a day for a variety of things although to be honest a lot of it was a blur. Looking back now, I feel incredibly thankful that I have regained the health that I had pre-transplant, and to all intents and purposes I feel as well now as I would want to be. It was a rough ride to getting where I am though and the process has changed me psychologically too, so I would encourage everyone to take the time to think things through and decide what is best for them. And I only think of statistics as just statistics. They are helpful but they can never tell you outcomes for any one individual.
Wishing you all the very best on the road ahead.
Greg
Hi Coffey,
I had an allo transplant last year. I was 37 and in pretty good health at the time. I found it really tough but after about 8 months recovered and am pretty well again now.
I don’t think anyone can really tell you what to do. Everyone is an individual and in my experience everyone tends to react to it differently. I suppose being in as good a shape as possible is probably helpful. I lost a lot of weight and strength so maybe my built-up reserves helped me get through it? But I know I had a fairly rough ride in comparison to some I know who sailed through (GvHD was the main problem for me – this is where the donor cells start attacking your own healthy cells – it can happen anywhere, mine was the skin, liver and gut). And then there are some I chatted with on other forums who didn’t make it so they are not here to give you their opinion.
All I can really offer is take your time, listen to the experts, talk to as many people as you can who have had to make this decision and then let your son decide what is right for him. He is really the only one who can decide what he wants to do. The risks are serious and real, the benefits are potentially amazing but largely unproven and unpredictable. You might live very well for a long time without an allo. You might not. The allo might not make any difference. The allo might be the best thing you ever do. It might kill you off early. I suppose what I am saying is I don’t think there is right or wrong in this – just do as much research as you feel necessary, listen to the doctors treating your son as they will know his specific circumstances and then whatever you decide to do, just have confidence you made the decision that was right for you and go for it (whatever that “it”is).
Wishing you all the very best and please let me know if you have any specific questions.
Greg
Hi Susie,
So sorry you have had this treatment, it is all too common unfortunately, but please keep persevering, you deserve it.
Also, please mention your anxiety to your consultant. I was referred to a clinical psychologist at the hospital and it really helped me out. I won’t say it made the anxiety go away but it certainly gave me the tools to manage it.
Wishing you the very best,
Greg
Hi Richard,
Best of luck for next week. I replied to your wife’s post on another thread re: the mini-allo. It’s a tough decision so take as much time as you need. Any specific queries, I’d be very happy to help.
Cheers,
Greg
Hi Lynn,
I did the tandem transplant (auto in Oct 2015 and mini-allo in Feb 2016). I am as well now as I would ever hope to be. However, there is no way of telling whether I would have felt like this anyway without the allo and the journey to get here was horrible and dangerous at times (feel free to read some of my older posts when I was in the middle of it). I decided to do it because at 36 I couldn’t get my head around the disease being incurable so I figured I needed to whack it as hard as I could in the hope it would give me the best possible chance. In my experience, the actual procedure is pretty much the same between the two but the risks with an allo are a lot greater and the recovery time was a lot longer so it is a decision you should definitely take your time over to make sure you are as happy as you can be with whatever you decide. Please ask any questions you might have, I’d be very happy to help.
All the best,
Greg
Hi Andy,
Welcome to the forum although sorry you had to find it. Hope all goes well on Thursday. Please feel free to ask any questions or share how things are going – we are all here to help.
Cheers,
Greg
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
