Hi donna

I think it is a good idea to get a second opinion at this stage, I know there are other drugs that can be used especially if he has had SCT, think bendamustine is one of them, speak to the specialist nurse here at myeloma uk, she should be able to help you with information.

I am here anytime you want to talk, you can email me if you…[Read more]

Hi donna

what treatments has your dad already had? I am really sorry that you have been told there is no more that they can do. He sounds like they are still actively treating any problems, so why nothing else?

with love michelle x x

Hi All

Just to let you know that Mum came home last night, and is so happy to be back in her own bed lol! She is now on Revlimid and will be having weekly checks at the hospital for 8 wk. Her chest is so much better, but she still has a cough, i am sure that will get better in time.

with love michelle x x

Hi everyone,

Thanks for the replies. Well, I'm on day one and like you said Norman (and it's great to find someone else on the same trial!)so far no side effects apart from feeling a bit dazed – but I think that is more to do with the fact I didn't sleep all last night (despite not having started the CRD!)!!

Anyway, I know it's early days,…[Read more]

Hi David,
Might be able to help you there. I used to be on talktalk and had the same problems. I think it is something to do with that your account is with talktalk to send emails, and since you can't get the internet access via them, you are unable to send emails. I don't quite get why you can receive them but I had the same thing!!! I never did…[Read more]

Thanks Bridget!
I'll ask the question tomorrow but I think you're right! And my other thought, is why are we all so worried about using the best treatment first…..surely it's better to use it up front and get the best quality of life earlier?? (actually, if I'm honest, that's my husbands thought, but I have to say I agree!)
Debs…

Hi Dai,
I did suggest to the webteam when I met them at the london infoday, that perhaps there should be an area of the site where people know that once they enter it the language might become a little bluer!!! Funnily enough, it doesn't look like they took me seriously!!
God forbid they ever take a look at the Under 50 site…they'd be…[Read more]

Hi Katie,
Not sure on the answer to that one, though I will ask on Tuesday. I'm not sure it would as I thought that it was more that you weren't allowed access to it (because of cost) until you'd tried other options. I also read something somewhere that suggested that if you stayed on revlimid for more than 2 years, celgene pay for the drugs? But…[Read more]

Hi David

I dont know, all mary said was that it didnt work and that he was back on chemo, didnt give me any levels. I can ask her, hoping to meet up with her in december for a myeloma support group.

with love michelle x x

Will do david thanks michelle x x

Hi all

Hospital allowed mum to go out on half day release to see Disney on ice, she had a fantastic time, very tired when i got her back there, but least she got go.

with love michelle x x

Hi Dai

I have heard from Mary and She and her sister are fine, Dad Patrick is ok too, SCT didnt work so he is now having Velcade treatment, and suffering from breathlessness with it, but all in all they are well.

with love michelle x x

Hi Mari,
I think that basically I have a 50% chance of being given CRD or CTD as induction therapy, and then depending on how I respond, I may get velcade before transplant (if I don't get a full response) and then after transplant, I have a 50% chance of getting Revlamid as a maintenance drug, which has been shown to be really successful in…[Read more]

Hi david

And they happen to be in the same hospital too, but under different consultants.

Hi Bridget
Roller coaster sure is the word to use, I am going to ring the lead specialist nurse today, to see if she can explain to me what is happening.

Just when things were looking up, she was so well at the beginning of the week, I know that…[Read more]

Hi Roz
Glad he has had op now, i understand what you mean about the Northern tho for the wheelchairs for that hospital it is rather hilly!! Hopefully it wont be long before they transfer him back to hallamshire.
yes defo keep us posted.
with much love michelle x x

Hi All

it was planned that mum was coming home today, well it was not meant to be, she had really picked up at the beginning of the wk and has started to go down hill again, been to see her tonight and she is looking quite poorly. They have done 4 xrays of her lungs that they can sit side by side to look at them, not really sure what for tho?…[Read more]

HI Jackie

My mum was diagnosed july 09, and she was in incredible pain, they tried all sorts of pain killers, she is now on methadone, it works better than any other pain killer, bone pain is one of the hardest pains to control,you need to just keep nagging the docs/consultants etc, have they referred him to the palliative pain team? they are…[Read more]

Hi Roz

Omg you are having a rough time with michael, but it is good to hear from you, was getting concerned that you had not posted. where have they moved michael to Northern General or Weston park? Really cant understand what is happening with his arm tho, surely someone should know what to do with it!? keep ur chin up

with love michelle x x

Hi Dai

I have Mary's email address, i will email and see if i can get a reply, i bumped her her post a few wk ago because i was worried and she didnt reply, i will let you know if i hear anything.

with love michelle x x