Dear Eve and Slim

I am so so sorry to hear your really sad news.

Wishing you all lots of love

Thoughts are with you
Debs xx

Welcome Jacqui

Love
Debs x

Hi Stephen

Just to say, I think it is TOTALLY normal to be preoccupied with your pp levels pre transplant. I definitely was, and used to phone the hospital as soon as I thought the results would be in! It is only post transplant that I have now trained myself to wait until the next appointment! The reality is that pre-transplant, you know that…[Read more]

Hi Stephen,

Just a quick one as I have to dash out, but I am on the Myeloma XI trial and started on revlimid. After 4 cycles I also plateau'd and was randomised to Velcade. (My pp had dropped from 55 to 28 by this point). The velcade did a similar thing…dropped quite quickly in the first couple of cycles and then slowed down. I had to stop…[Read more]

Thanks Helen,

That's really kind of you!!! It's really lovely that people are prepared to go out of their way to help raise some money for the charity that supports us all so much!!

I look forward to getting the package!! It's like Christmas come early!

Debs xx

I use safari and see big and small pictures. My picture is ok though if that is what you mean by safari users being unaffected.

Debs

Hi Ann,

Welcome to the site and I hope that it gives you (and maybe Pete!) all the support that you need. It was definitely my lifeline when I first got diagnosed and everyone here is just so welcoming.

Take care and good luck
Debs x

Hi Trish,

I had my SCT last summer, and my paraprotein came down to 2. My bone marrow (another indicator of remission) was undetectable – well the abnormalities were!!

They class me as having had a Very Good Partial Response. Because my pp isn't zero, they can't class it as total remission. But in reality, I am in a sort of remission as I am…[Read more]

Hi Jean

Like others have said, try not to worry too much. But they are totally right that Frank should just be careful who he is around over the next week or so, especially if he wants to go to Spain! He needs to be as fit as possible if he is going to insist on going. I'd also ask his consultant what he thinks. I'm off to Beijing in August but…[Read more]

Hi there Tony

Nice to hear from you. I am on the Myeloma XI trial too..I got picked for revlimid and had 4 cycles of this before I plateaud and moved onto velcade for 4 cycles. Between the 2 they brought my pp levels from 50 down to 8 and I had my SCT in July last year. 9 months on and doing fairly well bar a few more coughs and colds than…[Read more]

Thanks Ellen,
Just need to stay in remission for a good 4 or 5 years or more and hopefully there'll be some trials in the UK by then…..or maybe we'll be even further along the line 🙂
Always good to have some hope in the pipeline!!!
Look forward to reading MUK's work on this next week
Debs x

Hi David,

Yes I think they could well be part of life. I had my SCT in July and have only really had 3 weeks since the beginning of December where I've been without any sort of illness (wish I'd been on the antibiotics you were on!!!)

Paracetamol and lemsip cold and flu are my lifeline these days!!! I keep them in business I think.

But…[Read more]

Does anyone from MUK have any news on whether this is a drug we should be excited about or whether it is too good to be true….first time in ages I have been positively optimistic about what could be ahead of us, but I am wary as nothing was mentioned about this sort of vaccine at the info day.

It's frustrating though that there is limited support out there. I just about get the ESA (although am waiting for them to question that!) but am not eligible for DLA as I don't need support with caring for myself – I can just about cook etc but we have a cleaner as I don't have the energy for that. I wish I'd applied for it when there was NO WAY…[Read more]

Hi Helen

Think Paul has covered most things. I used to work in HR before all of this although it's been a while since I was on the advice side of things.

THey have a duty of care to see if you are fit for work….they shouldn't be asking you back if you aren't, but as with all business, are likely to take the view that if you are fit for…[Read more]

Hi Kirsty,

We'd all be lying if we said that the SCT was a lovely experience, but you do get through it!

The main things are to keep people away as much as possible for the 3 weeks you're in, and if possible for a month or so after. I only let my husband, and one of my 5 siblings visit….my parents and the rest, I made wait. I thought it…[Read more]

Hi Kay,

I'm with the others…think you are amazing to have gone back to work so much. I think about it and then know that I can't when i get ill from just overdoing it with the kids and looking after the house.
I suppose where you get joint pain, I get coughs and colds and exhaustion.
Perhaps think about doing a bit less if your work are…[Read more]

Hi Dai,
I don't tend to post regularly anymore because I find it all a bit tough at times.
Post transplant, I have been pretty much constantly ill with coughs, colds and illnesses. That alongside trying to run my family in some sort of normality,and organise my ball just takes it out of me, so I suppose that is perhaps the same for others.
I…[Read more]

Bumping this post up again so that people know how to get hold of Scotty if they want to join the extra Under 50 site….as she says, the language is a bit riper but it is another type of support. x