[simonParticipant]

HI,,,NOT SURE WHERE I’M UP TO,,,HAD MY LAST AREDIA YESTERDAY,,,,IN APRIL I WAS IN REMISION..NOW MYELOMA IS SHOWING AGAIN,,STILL LOW,,AS OF JULY 31,,,SO NOW SEE DOCTOR EVERY 3 MONTHS SEE WHERE MYELOMA IS AT,,ALL THIS AFTER 18 MONTHS OF TREATMENT,,,SO OF COURSE I DONT KNOW HOW SLOW OR QUICK MYELOMA WILL RETURN TO NEED TREATMENT AGAIN!!! UP IN THE AIR,,AND DREADED UNCERTAINTY BACK AGAIN,,MAY BE I SHOULD OF PUT THIS IN GENERAL TOPICS,,WISHING EVERY ONE WELL,,TAKE CARE,,,,,,,,,,,,,,,

[andygParticipant]

Hi Simon.

Unfortunately that’s the nature of the beast treatment knocks it down but it always comes back. The time scale varies vastly from one patient to another. Some only get a few months of remission others get years some never achieve remission. They won’t start treating you until the myeloma starts causing you problems. ie bone damage, kidney problems etc. which hopefully won’t be for a long while yet. Unfortunately uncertainty is the life for us MMers.

Every day is a gift.

Andy.

PS. I’ll of been on 48 months of constant treatment in October.

• This reply was modified 9 years, 2 months ago by  andyg.

[mhnevillParticipant]

Dear Simon

I can feel your frustration with you. As Andy has said this is a complex disease and each one of us is very different. I can say though, having read posts on here for five years, that having “only” a partial remission doesn’t seem to determine the progress of the disease. Some people don’t seem to achieve full remission even after a SCT but still do very well and other people do and yet have a shorter remission.

I think Andy’s philosophy is the best for all MMers! Do as much as you can, while you can and don’t worry too much about the future. I know it’s easier said than done.

All best wishes.

Mavis

[Author]

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