Hi Cupcake70,

Firstly hello and welcome, I do not get on here as much as I would like but it is great and a friendly and very helpful site, quite unique to us!
when I read your post and concerns it took me right back, I am post sct approx 22 month, not all plain sailing but well worth it. Like Wallace I found the Melphalan awful. but since early…[Read more]

Hi all, I too take the Adcal and Zometta, not sure if my blood is checked though. At my zometta seesion this week I was told my sessions are to be changed to every 3 months instead of every 6 weeks. Usher (nurse) said this is good news, I will ask at my next clinic though.

Regards to all

Karen

Hi all.

Many thanks for all the replies.

Today marks another anniversary – Three years ago today Steph and I were married.

It’s been a roller coaster these past 3 years and I don’t know how I would coped without Steph. We’ve managed to get by and fit a few trips in, we’re at the lakes now, sometimes for pleasure and sometimes for health ie the…[Read more]

I thought that vitamin d levels were checked at each blood test.
I take a daily Adcal that includes vitamin D, and every three months have a calcium infusion.
Regards
Tony F

Well done Andy G hope the success continues. Hey the Greek sunshine has probably got something to do with it as well!
Keep going.
Regards Tony F

Hi Tom, sorry to hear this, I hope this next round of treatment achieves a longer remission and few side effects.

Good luck and very best wishes.

Take care

Karen
xx

Hi Susie, I am monitored 6 weekly at present, last PP was 39. It is an awful disease and different for everyone which I think makes it challenging to manage.

I was only diagnosed in April this year so still trying to come to terms with it all.

I haven’t had a bone marrow biopsy as blood tests don’t show any end organ damage.

Hope you are t…[Read more]

Hi Susie,

Hope all goes well for you on the second cycle and not too many side effects.

I had a monitoring appt recently and numbers up again, but no signs of any end organ damage and I feel OK in myself so continuing on the wait and watch protocol for asymptomatic.

It is so hard to define ” fatigue” isn’t it as sometimes I am really tired by…[Read more]

Hi Susie, hoping you are doing OK and coping with the treatment regime.

Kind regards

Karen

Thanks everyone.

Every day is a gift

Andy xx

Aye, it is a tricky bugger and no 2 cases are the same, which makes it even more difficult.
Wishing you well.

Karen

Done! Good luck! x

Hi Tom, just read this, I get pains in the same part of my spine, ribs and sternum, I am still on Zomorph, I was told I will always have some pain as there was a lot of bone damage (late diagnosis), so I just have to control it. I had my sct in January 2013, so if my appetite goes or I am more tired, or pain is worse, I worry that it’s coming…[Read more]

Done!

Hi Jan, what an awful experience for you both, I am not surprised you have been scared and hope he is getting sorted out by the Doctors.

Do you think that you could use some counselling? it must have been so traumatic for you and might help to “talk it through”

Hope things start to improve

Kind regards

Karen

Hi smoulderers. I think that is right.

Although there are a lot of treatments out there. Not all work for everyone and to date all seem to fail eventually even if they do work initially. So the longer you can put off starting the treatment journey the better in my opinion.  Bisphophanates are used to strengthen your bones due to Myeloma being…[Read more]

Thanks everyone for all your help.

Every day is a gift.

Andy xx

Hi Brian

Sorry to welcome you to the MM club. I got a lot of helpful advice on the “confusing journey” thread.

I too hope to stay asymptomatic for as long as possible. The hardest part has been getting my head around the no treatment until there are signs and symptoms that the MM is causing end organ damage. It has been described as the Sword of…[Read more]