I am so sorry to read about your Mum and I send both you and your Mum warm wishes at this very difficult time.

In terms of the mental health side of things, what size hospital is your Mum in? If it is a major cancer centre, they will definitely have on-site psychiatric and/or pyschological support. You just need to make it known how…[Read more]

Welcome to the forum although sorry for the reason you had to post. I hope things went well yesterday and you have a bit more information about your situation. There will no doubt be a lot to take in, so take your time, do your research, ask questions and try not to worry as best you can. I would advise sticking to well known myeloma…[Read more]

Welcome to the forum.

I know how easy it is to get stressed out about blood readings, trust me I have been there!

The best advice I can give you is to try not to think about it too much. In my experience, readings can vary by a lot very quickly and different machines can come up with different results. The best bet in my opinion is to…[Read more]

Thank you for posting although sorry for the reason you to post.

I think your question is a really hard one to answer because myeloma can be such a unique disease affecting individuals in very different ways.

Kidney failure can happen, infections can get people due to weakened immune system, it could be the treatment that causes…[Read more]

Welcome to the forum, although I am sorry for the reason you had to find it. I have had 4 of the 6 drugs you mention. I think a lot of the time it can depend on the dosage of the drug, but generally speaking I found melphalan and prednisone to be the worst. The former gave me very bad stomach problems and the latter significantly…[Read more]

Sorry about your name!

I was treated in Bristol and I cannot praise them highly enough – they seemed to know what they were doing.

I have the light chains myeloma so slightly different to yours (my PPs have never been high) but other than that the time frames seem very similar – diagnosed March 2015, auto SCT Oct 2015, allo SCT Feb…[Read more]

Not sure if it is the same but I have had what was called a tandem transplant – an auto SCT followed by an allo (donor) SCT about 3 months after. I had the donor SCT when I was in remission – I was told it would give me the longest possible remission.

it’s a tough process to go through – a donor transplant brings additional risks n…[Read more]

i would back up what beetlejuice said – it can be two to three weeks after SCT before the patient begins to feel better. I was pretty shattered all the way through and often it was a comfort to have loved ones there even if I didn’t really engage. I took books in with me but never read them. Things tend to turn when the blood counts c…[Read more]

Happy birthday! 7 years, that is fantastic, and here’s to many more!

All the best,

Greg

Greg

Cheers,

Greg

Really sorry to hear your news, I really hope it starts to get better soon.

The only thing I can offer is whether some of the depression and panic attacks are down to prednisolone? I am not saying the emotions are not real, just that when I was on pred, everything was much more intense – steroids are known to do that and I think you…[Read more]

An allo transplant is a donor transplant, the exact same process as an auto except it is someone else’s cells going back in. The thought process is the donor’s stem cells might do a better job of attacking the myeloma cells. But it is considered higher risk as there are more potential complications.

I did mine more than 18 months ago so…[Read more]

I was 36 when diagnosed two years ago – not nice to be in the “extremely rare” group as my doctor put it. I had VCD, followed by tandem stem cell transplant (auto, then an allo 3 months later). Please feel free to ask any questions you may have.

All the best,

Greg

sorry I can’t remember my counts between cycles but I can confirm the chemo is harsher in prep for SCT, the logic being you really want to blast those myeloma cells before you put the baby cells back in. Melphalan was the worst for me, it made me badly sick but only for 1-2 days. It also makes your hair fall out. It is tough for a…[Read more]

It can depend on a number of factors – whether there are any complications (e.g. Unexpected infection), bed space, personal preferences (I asked to put my admission date back a week to avoid by birthday). I think mine was about 3-4 weeks – I think anything up to 6 weeks is normal.

Wishing you all the very best,

Greg

Many thanks for your note, it was a very kind thing to say thank you. I think you are right that there is something unique about the patient’s experience that only a patient can understand, although sometimes I do wonder if it is actually harder to be a loved one, because a cancer diagnosis happens to you too, but not physically, which…[Read more]

I had a PICC line in my arm, I am guessing yours is going into your chest? I don’t know if the process is different or not. When it went in, I found it painless but a bit strange. The people doing it are very experienced.

Once it is in, the key thing is keeping it clear of infection. It sound be changed once a week and try to get a…[Read more]

Is your husband taking dexamethasone? When on that, I often started sentences and then forgot why I did, so it could be that, but it wasn’t as bad as you describe, so definitely best getting it checked out.

Wishing you all the best,

Greg

I reckon everyone reacts differently although my guess is most people would say 6 weeks is still pretty early on in the recovery phase, especially if you have been re-admitted which is bound to knock you down a bit. In my experience, it was about 3 months before I felt like myself again and I had a pretty smooth run. I wouldn’t be…[Read more]

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]

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]

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

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

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]

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

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]

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: 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]

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]

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]

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]

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]

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]

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]

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]

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

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]

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

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

Very sorry to hear about your fiancé and I hope that the treatment starts getting things in shape very soon.

I was 36 when diagnosed (just over 2 years ago). I am fairly regularly told I was young to get myeloma but I have come across someone who was 31 so I am certainly not the youngest. The incurable aspect of myeloma is pretty hard…[Read more]

In my experience, there was about a 6 week gap between the end of treatment and the SCT. Not sure if this was normal, but that was my experience.

Wishing you all the best

Greg

Welcome to the site, although very sorry that you had to find it. I hope you find the site useful in helping you build knowledge and feeling less alone.

I had VCD as treatment, so can help with the V and D aspects. I tolerated Velcade pretty well – it was done via a quick injection – I didn’t have any side effects although I think some…[Read more]

just wanted to say thanks very much for your post and very well done your Dad. I was 36 with 3 young children when diagnosed so I am really pleased to read what your Dad has managed to achieve – long may it continue!

All the best,

Greg

Greg

Thanks for your post. It’s funny, the more I learn about the allo, the more I realise everyone reacts to it differently. I am probably the other end of the spectrum to you. I got GvHD pretty much straight away (Day 50) even though my donor was my brother and it was assessed as low risk of happening. I ended up with GvHD of the skin,…[Read more]

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…[Read more]

Thanks for your post – it was really inspirational. I was 36 when diagnosed and I have had a similar treatment plan to you (I am about 10 months behind you) so it is great to hear that you are doing so well. I got pretty bad GvHD after the allo, but I am recovering and it is great to hear everything you say about exercising and playing…[Read more]

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…[Read more]