Hi Aileen,
Sorry to hear of your diagnosis but really pleased that you have found this site. I hope that it helps you along this journey that you find yourself on…and that we can help you too.
Ask any question…none is stupid…we've all been there no matter how much it seems like we use all the jargon…sadly we've learnt it over time.
Take…[Read more]

Hi,
Just wanted to wish you both good luck on the op. I'm sure everything will go fine. I'd love to say don't worry but as a carer myself I know that's not possible. 🙂
Last year my husband got his flu jab so hopefully he is on the list this year. My GP's front desk can be awful. If you don't get a letter they won't do anything and don't want…[Read more]

Hi Sandra,
I was told to be very careful and spent the first few weeks adhering to that advice. But with 2 young kiddies, I can't avoid being out and about, so I have to say, I haven't been so careful since. I go shopping at the normal times etc. I sort of forget that I am ill still and that my levels are low!!! I should probably be more careful…[Read more]

Fantastic News Dai! Here is too a very long remission time!!

David was supposed to start his 6th cycle today but he has been admitted feeling under the weather. So they are waiting to see whats what and do a few tests and a scan.

Hope the last two cycles are being kind to you!!

Love
Meike

Dearest Min,

I don't know what to say. Peter's passing has come as complete shock and so sudden. My heart goes out to you and your family! You are a remarkable woman who has been supporting her husband in the most loveable way. You are also incredible at advising, helping and supporting other members of the MM family. Please keep strong! And…[Read more]

What great news Dai.

I am so so chuffed for you and hope that the velcade keeps doing its job!!!

Debs x

Helen
Here's to a long remission. I am just over a month post SCT and if it gives you hope, the last two weeks have seen a big improvement in my energy levels. I still need an extra couple of hours sleep a day, and have odd days where I feel terrible and sleep all day, but all in all, those are getting fewer and fewer and there is a light at the…[Read more]

Hi Sandra

Good luck with it all…I'm a month post transplant now!

I was told I could have a duvet etc….some people I know were told they had to take a brand new one in if they wanted to, and I was told I'd need to change the cover every day or so….I ended up not bothering even though we had the new duvet at home…i was so hot in the…[Read more]

Hi Keith,

Glad to hear that you're out of hospital and on the mend! It's a good feeling isn't it?!

I was also quite ill…from day 1 sadly….and lost over a stone in weight. Luckily, unlike you, I could afford to lose it as it was all weight I'd put on while I was on the Dex. So for me it was the one positive that I got out of the whole…[Read more]

Oh Tina
They've postponed it till next tuesday- I cried when I got the letter! I feel like my toes are broken tonight…worse than they've been in ages. It's partly my fault as I've overdone it today and not had a sleep but it's depressing to know it could have been looked at tomorrow and now I ve got another week to wait.
Enough moaning!! Down…[Read more]

Hi nadine.
Ask away on the question front. I was on the myeloma xi trial and had rcd ( revlimid, cyclo & dex). I plateaud quite early and went onto velcade. I don't regret the Sct yet although if I'm honest there were times in hospital and when I got home when I wished I hadnt done it as life seemed so hard. But now there is a light at the end…[Read more]

Hi,
Was nice to meet you as well. Yes our 1st meeting is a few weeks away! Getting excited & nervous.. Thank you for the support!
Chelle

Hi Nadine,
Welcome to the site although I'm sorry that your mum has MM.
Why are you finding it hard to discuss it with your mum? Because of how you feel, or because of how she is? I think if you can talk about it with her, all the better for both of you….you can support her better if you understand how she feels and also, my personal view is…[Read more]

Hi,
My husband is on Zometa and touch wood had had no problems. He has had about 3-4 infusions. I'm not sure if he can be switched but it is worth asking the consultant or even calling Ellen on the info line here as she might know or be able to point you in the right direction.
Best of luck,
Chelle

Hi,
My husband has been off since late March. He was told when his levels were steady for +4weeks he could go back (mainly his neutrophils). They went a whole 4 weeks but that's it. He's still home. As much as he is waiting to go back it is for the best and it had taken his SO long to come to terms with that. He would go to work if his eyes were…[Read more]

Hi all..
Thank you again for the lovely words. We saw Phil's Consultant today. He doesn't think the Revlimid is working like it should. Doesn't think it is a "Blip" since the levels have gone up that much. Going to stay on the Revlimid for now and been referred back to Dr Cook @ Birmingham to hopefully start on the Bendemustine Trial. He was too…[Read more]

Hi. Just wanted to Thank everyone for the lovely words of wisdom. We are back at the Consultant in the morning so fingers crossed. I do try and stay positive I just hate getting knocked back 2 steps after going ahead 1.. Guess that's the name of the game though… Thank you again.. Will let you all know what happens at the Consultant. xx

Ahh, thanks Tina!!

Let me see what they say to me on the 13th and then if I'm allowed to use one, I'll pop over if that's ok with you….would be good to catch up and once the kids are back at school, that'll be easier!

Love
Debs x

Hi Paul

Welcome to the site….it's a great place for support etc.

I am 36 and was diagnosed at 34 with smouldering MM. It developed and I started on revlamid on the Myeloma XI trial. Plateau'd quite early and went onto velcade and am now 44 days post SCT. Just for a bit of history!

Take it easy, fit the drugs round you as much as you…[Read more]