Hi Mark,

I am so sorry to hear about your dad. Don't look for survival rates – the illness is so individual and the research is developing.
My friend John was diagnosed a year ago and he also had a tumor. He got radiotherapy, chemotherapy and a stemcell transplant. Now he is back working full time and doing really well.

I remember when I…[Read more]

Hi David,

2.2 after only 10 weeks is very good. Remember they can drop further down at least the next 4 months and as long as they are below 5 they are good!

John is almost 6 months post sct and at his latest check (end January) it had dropped from 2.4 to 1.7. We are so happy!

Did you ever get an answer regarding the blood versus the bone…[Read more]

Just read a bit more on this topic here:

http://www.myelomabeacon.com/news/2011/02/02/bone-marrow-examination-can-predict-progression-of-multiple-myeloma/

When is your next appointment? I am really curious to hear what they tell you.
Here I have copy pasted my question and the response from the nurse:

My friend aged 59 was diagnosed with mm this March. At that time his M component was 37. In August he got a sct and at the first monthly check the M component had dropped to one tenth: 3.7. On the…[Read more]

Ok I am looking forward to hear what they tell you! Somewhere I read that "normal" people have a M component between 0 and 5 which means as long as it isn't more than 5 everything is fine.
However I find everything I have read quite unclear and contradictory.

Kindest regards,
Amelie

Hi David,

John's protein was 37 when he was diagnosed. After sct it dropped to 3.7 and further down to 2.4. Now we are awaiting the result of his latest blood test.

I still haven't figured out what the paraprotein level means regarding to response. John was told there was no evidence of the disease in his bone marrow – but whether that or…[Read more]

Thanks a lot for asking! It is very good to know.

You have the right attitude! I wish I could convince John to use the hand gel.

Ok, now it seems it wasn't a flu, he is ok and back to work. What a drama for nothing 😀
Hopefully it means it isn't too late to have the flu jab.

Just want to send you my best wishes for a great result with the pomalidomide.
Love
Amelie

Thank you Tom!
I have told him to see the doctor and usually he listens to me, so I hope he will do it. At the moment I am terrified.

Celgene is applying for further approval in Europe so Revlimid can be used as maintenance:

http://ir.celgene.com/phoenix.zhtml?c=111960&p=irol-newsArticle&ID=1512323&highlight

Good to hear that you are home! Well done!

Thank you so much for the advice, Min. I will tell John straight away to see the doctor.
Love,
Amelie

John isn't doing too well today. He just told me on the phone that he feels like sleeping all the time. I told him to get the flu jab, but obviously it is too late to catch this one.

He said he didn't expect this flu to be worse for him than for anybody else. He doesn't know much about MM, which in one way is good because it doesn't occupy his…[Read more]

Thanks for your reply. John isn't my bf, but a very dear friend – like a second father for me (he is much older), so I don't think I should mother too much 😀
However I am the one who helps him to find information on the internet since he isn't that kind of guy. And you have all been fantastic helping me with that task! I will talk to him…[Read more]

Hmm, I was too late – it seems that John has got the flu now. Hope it won't be too difficult 🙁

I understand you! I was also disappointed when I heard that John's PP is 2.4, but as far as I have understood it can still be a complete response when there is no evidence of the disease in the bone marrow.
Yes, it can continue go down the next 6 months.
Best,
Amelie

Hi David,
Thanks for the great news!
May I ask why a PP of 2.2 is a downer? I thought it was good as long as it is below 5.
Take care!
Love
Amelie

Thanks everyone for really great help and advice! Wouldn't know what to do without you!
Love
Amelie