Hi Sabs,

Definitely push it with the medical team as this wasn’t my experience on a similar regime (but I guess everyone is different). They should have nutritionalists at the hospital as well – they can provide high calorie shakes to keep weight up. Keep trying all you can to get fluids in – up to 3l a day is really important especially when…[Read more]

Hi Susie,

i’m sorry to hear about your neuts and the vomiting. Any concerns at all, please share them with your medical team as they will know what to do. Treatment is rubbish but keep hanging in there, hopefully it is doing the trick of putting the myeloma back in its box. And things do go back to normal once treatment ends. I am 18 months…[Read more]

Hi Susie,

i’m doing good thank you. Almost 18 months since my allo transplant. 3 monthly check-ups now. Just trying to keep up to date with developments and helping others out if I can. Treatment is tough whilst you are in the middle of it, but it is surprising what the body can put up with and come out the other side – keep plugging away.

Greg

Hi Susie,

If you search for neutropenia in the search bar, there is a booklet on it – it looks like it only kicks in if the neuts go below 1 so I don’t think it is relevant for you – but maybe worth a read to know what to look at for?

Greg

Hi Susie,

You should follow a clean diet to avoid infection from your food when your neuts get too low – sorry, I can’t remember the thresholds – it normally kicks in after SCT but is good advice if you are getting towards being neutropenic – a lot of it is common sense – washing fruit and veg, not going past sell-by dates, avoiding shellfish -…[Read more]

Hi Susie,

Neuts at 1.5 are getting on the low side, but in my experience changes to plans only take hold if it goes below 1.0 – take care of yourself though as you are going to be at greater risk of infection. Did they mention clean diet to you yet?

All the best,

Greg

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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