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

Hi Sabs,

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]

Hi Vanessa,

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

Hi Dawn,

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]

Hi gjones,

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

Fantastic news Compass – keep up the good work! Sending warm wishes your way.

Greg

Hi Alex,

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]

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…[Read more]

Hi Alex,

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]

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…[Read more]

Hi cpriestley,

Welcome to the forum although sorry you had to find it. Please ask any questions, share experiences or just vent, this is what this is for.

Shock is entirely natural. I was in a daze for a long time post-diagnosis. The best advice I can give at this stage is maybe to read a few info sheets on myeloma, what it is, treatments,etc…[Read more]

Hi Dan,

I think it will probably depend on the regime and your friend’s specific condition. I had Velcade as initial treatment and that consisted of one injection twice a week. So it involved going to the hospital twice a week, but I was only there for 5 minutes each time so not a big time commitment. Your friend will probably also likely need…[Read more]

Hi Lisa,

I definitely remember the euphoric moments and the inability to sleep. I don’t remember the down times so much, but my wife tells me I could be incredibly foul at times. I think what happens is that the steroids accentuate emotions that are already there. So if you are feeling happy, you get a sense of euphoria, if you feel sad you get…[Read more]

Hi Lisa,

I didn’t have memory issues but I would definitely say cognitive function was impaired. I would sometimes start conversations and then by the end forget why I started them. All that stopped when I stopped taking Dex so hopefully that will be the same for your husband.

All the best,

Greg

Hi Simon,

I recognise a lot of the emotions in your post. I think it is entirely natural for you to feel scared – i think everyone does. I don’t know your specific situation but myeloma is a very treatable disease and there are people on this site who have lived with myeloma for many many years. The stem cell transplant process can be tough but I…[Read more]

Hope you manage to get it sorted out really soon.

Greg

Hi Rob,

Welcome to the forum although sorry you had to find it. MM can be a tricky little fellow but hopefully you find support on here as and when you need it. There are loads of good news stories out there and treatments developing all the time so whilst it is a massive shock to get the diagnosis, it is a very treatable disease and I hope you…[Read more]

Hi Puglady,

I would definitely go get it checked out. I have had 4 biopsies and sometimes got a lingering dullness around the entry point but nothing that spread to the hip or thigh. It may very well be nothing but best to check I reckon.

Wishing you all the very best,

Greg

Hi Therese,

I have had the good and the bad when it comes to groin pain.

The bad first – Groin pain is how I first got diagnosed with myeloma. It turned out to be a very bad blood clot stretching up into my abdomen. However, it was a really bad pain and I could hardly walk, so it should be fairly obvious if it is this, and if the Doctor has see…[Read more]

Hi Ian,

I had this discussion with my consultant a couple of weeks ago. I had 6 months of Zometa before SCT and then had an 18 month break. My consultant thinks I should go back on Zometa as the benefits outweigh the negatives in his view. He mentioned the 2 year period that you mentioned and said he would advise the infusion once every quarter…[Read more]