Hi Lexi.
I have multiple myeloma and my paraprotein level was 41 at last test! I started at 50 in oct 2011 and my paraproteins have proved a challenge to my medical team and I. The main thing to remember is everyone has a different journey and reacts differently to treatment. The target for me is to get below 10 and have a stem cell transplant…[Read more]

Hi Tina.
A warm welcome to the world of DEX. I've had my 4th round of DEX for my 2nd cycle of rev/dex therapy. It's 3:30am and I'm wide awake! I know I'll be sleepy all afternoon but as Tom says its worth tfe side effects for the good it does. I get chubby rosey cheeks too.

Take care
Andy xx

Hi Teresa
CDT is usually the first line treatment of MM – well it was for me – and is cyclophosphamide, dexamethasone and thalidomide.
Hope your coping ok.

Love Andy xx

Big hugs Bridget. It sounds like you're having a really tough time so keep that chin up and I hope that you get stronger. Are you getting your appetite back at all?
Lots of love
Debs x

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]

Dear Eve and Slim.
We are so sorry to hear of your sad loss. Our thoughts are with you and your family at this sad time.

Love and hugs.
Andy and Steph xx

Dear Teresa and Pete.
We are so sorry to hear your dreadful news. It knocked the wind from my sails. I don't know what to say other than you are all in our thoughts and we hope that you knowing that can in someway help. There's no need to reply but I do hope you get this message.

Lots of love and good wishes.
Andy and Steph XX

Hi Stephen.

Welcome to the forum.
The important thing to remember about mm and the fight against it is that everyone's journey is different. Drugs that work marvellously for one person fail to make an impression on another. I know I seem to be in the later group 🙁 Velcade didn't work for be and now I'm trying Revlimid and Dex with my…[Read more]

Hello Vanessa and Philip.

Welcome to the forum. We are all friends here.

Sorry I can't help you with your question. I was only diagnosed October last year and haven't reached a stage for a sct yet. I'm sure you'll receive an answer from someone who has had a similar experience as Philip soon. If not you could give Ellen a call on the…[Read more]

Hiya Ann and Pete.
Welcome to the forum, none of us want to be here, but it's a friendly, supportive and informative forum.
Sorry for the delay in welcoming you but I was in hospital last week and have only just recovered.
I was diagnosed with mm oct 2011 after approx. 18 months of back trouble.
If you have any questions ask away, either…[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]