[eveParticipant]

Hi All

Wish I had known about that med for hiccups ,had Slim doing it in his sleep,drove me mad,now it is just every now and then usually when we are out,and things are very quiet,and out of the blue one loud hiccup and the whole world turns round.:-P Eve

[CAZ1Participant]

Hi to you all and to Charlie(welcome to this lovely support group) for starting the discussion.
Haven't been on for a while as am in the phase of recovering from stem cell transplant 14 weeks ago. It is an interesting journey but have learnt to take it slow, especially as the SCT slowed down the recovery I was making from a fractured leg last year (14 months ago!) but hopefully hydrotherapy and land physiotherapy will help sort it out.Muscle wasting caused by inactivity at SCT triggered off this lot of physio–so my strong advice is to keep as fit as possible during all the treatment stages.
After the initial few weeks of being extremely dependant on my husband, who had to be signed off so he could be with me 24/7,I am now feeling better in myself than I have done for a long time, but that can lead to exhaustion by trying to catch up with everything I've been unable to do(within reason given lack of mobility with my leg). Last week I hit a low few days with no energy at all, but then had to remember I am only 14 weeks old, so had a few 'duvet days' to recover.
On financial advice-I applied for DLA with the support of my Specialist nurse on 2 counts, the multiple myeloma and the disability with the slow progress of my leg-had to go to appeal but have now got both care and mobility component and backdated. It's only for a year initially but I fought it on behalf of all of us who have to live with life limiting conditions – who knows what tomorrow will bring in this dance with Myeloma? Have also met a new Spanish friend who's sister was diagnosed with Myeloma last week,so was able pass over my info guides for him to read as he was away from home–what a small world!
Keep up the good work——and the dancing!!!
Carol
p.s. I now have my new hair growing-had to go and buy a baby hairbrush!!

[tomParticipant]

Hi Carol

Am Pleased that on both things 1) you are doing great after your SCT and 2) you know that you cant do as much as you used to, and i think that is the hardest thing "the not being able to"?.

And Happy New Hair Brush 😎

Stay fit and well Carol.

Love
Tom"Onwards and Upwards" xxx

[VickiParticipant]

Hi Charlie

Glad you chose the trial and best of luck with it. Remember keep positive. I am sure that none of our friends on here who are sufferers do not want it and neither do we as the partners. It is definitely a whole new lifestyle and learning to get a grip of it! No easy and won't be,but go for stand keep your chin up

Vicki and Colin x

[DebsParticipant]

Hi Charlie,

I think everyone has pretty much covered things and I even wondered about not replying! But I thought I would say good luck with the Myeloma XI trial and tell you how well it has worked for me.
I got randomised to revlimid and had 4 cycles of that which brought my pp levels from 50 down to 28 – then I plateau'd. I was gutted. I then got randomised for velcade and that bought my pp down to 8 at which point I had a SCT. The chemo was hard when I got to velcade….I had worked on the revlimid and found it ok. Velcade exhausted me for about 2 out of the 4 weeks. But in-between I could still do most things!
I am now a year post SCT and whilst it hasn't been easy, I am now up to about 95% I reckon. The only difference is that I get tired more easily and if I get ill, I tend to hold onto that for longer.
I hope that gives you some confidence that it can all go the right direction.

I don't know much about financial help. We go to the Marsden which is a 3 hour round trip for us, but we chose that over our local hospital so I think we have to just suck it up. I don't think I'd get DDA now, but I wish I'd applied for it when I was really ill as it looks like I might have got that and a car then!!! Now I have to put up with my clapped out focus!

You haven't done the wrong thing being on the trial. The treatment is as good if not better than what you would get off it, and if at any point they try to get you to go down a route that you don't like, you can pull out at any stage with no compromise on what you would get as standard treatment.

Good luck!
Debs

[StanstanParticipant]

Thanks Debs

It is great to hear from people who have already gone through it. I am doing well at the moment but it is early days. I asked the consultant and I am 21 para at the moment which talking to others with Myeloma is not that bad.
I suppose everyone finds it hard accepting it in the beginning.
I shall try to be more positive and get used to it.
As Tom says – Upwards and Onwards. Was the SCT dreadful?

Charlie

[StanstanParticipant]

Hi Vicki & Colin

Here is to the power of positive thinking. Hope it works.

Getting more used to it. It is great having you all to talk to.

Charlie

[StanstanParticipant]

Hi Carol

So glad your hair is growing, must be great. I shall try applying for DLA and see what happens. I love your dancing idea – Dancing with Myeloma – cool.

Onwards, upwards and dance.

Charlie

[StanstanParticipant]

Hi Jean

Thanks, natural yogurt sounds cool. Poor Frank, seems to have had it worse than me. Drives me mad but seems to have subsided now.

Onwards, upwards and Dance!!

Charlie

[bill2009Participant]

Hi Charlie

I'm on RCD on Myeloma 11. Thought I'd go for the best option as I'm only 41 and got two kids. It is confusing but I found the best way is to discuss it with your partner. I found out on the 5th so it is still a bit new.

Good Luck
Bill

[VickiParticipant]

Hi Charlie,

Glad to hear things are going ok. Forgot to say,Colin had loads of hiccups when he was taking dex. Tried all sorts. Wished we spotted the option with taking yoghurt! Glad you are coping ok. Any questions please ask…..we are still awaiting colins new SCT dates!

Keep on going 🙂

Vicki and Colin x

[VickiParticipant]

Hi bill,

Welcome to the forum…..you say you are 41, there seems to be a higher incidence of young people getting this condition! My partner Colin is not as young as you but he's gone through the myeloma 11 trial and is awaiting his SCT dates. I won't say it has been easy in any shape or form, but the medical teams are well clued up on the various options, and that together with this forum really helps. As colins partner it is hard to stand by sometimes and feel helpless, so perhaps this site will help your partner too,

Best of luck

Vicki and Colin x

[StanstanParticipant]

Hi Bill

It must me trauma for you and your family at 41. So young. Let's hope we can go through the trials well together. Is your wife/partner OK? I feel sometimes it is worse for them than us.

As Tom says – upwards and onwards and as Carol says – Dance!!!

Charlie

[StanstanParticipant]

Hi Vicki & Colin

Let us know when the SCT dates are – that is the bit I am dreading, and recovery. Hope it goes well and maybe fun afterwards!!

Keep Dancing.
Charlie

[StanstanParticipant]

Hi Michelle

How long after SCT did you feel better? Was it dreadful?
So glad you are feeling so much better.

Charlie

[Author]

Posts