Hi Susan

I’m sorry no one has answered. I guess that what you asked is a bit out of the usual. Ellen on the Help Line is probably your best best.

As I understand it Mm can either be monitored via PP if folk secrete it, or by light chain readings if they don’t. However, this time my Consultant has asked for my bloods to be tested for both. I…[Read more]

Dear Helen

I’m really gutted to hear your news. It just doesn’t seem fair. Mind you, who said life would be?!

I know it seems a strange question, but does there have to be a mad dash to have more treatment? Will you feel ill if you don’t, or be more prone to infection, or is it just the numbers will rise?

Did you have CDT first time…[Read more]

Hi Ali

I don’t know what happens to the Site these days. I have just renewed my password for about the sixth time. I had an email saying your Mum was going to have radiotherapy, but the post isn’t here! Maybe you started a new thread.

Anyway, what I was going to say is, compared to everything else radiotherapy is an easier part!! The worst…[Read more]

Hi Ali

I has plasmacytoma wrapped round my spinal cord so had to have surgery four years ago. plasmacytomas in soft tissue seem to be dealt with by radiotherapy.

I like to have my blood results every four weeks when I go for Zometa infusion. I am always frustrated that they do not do PP test routinely. I am keeping a close eye on my kidney…[Read more]

Hi David

Just managed to get back on site after lots of difficulties. Hate this new Sign In set up!

Anyway, good to get on and hear your good news. It is so encouraging that our survival rates are getting longer all the time. I am now in year 4 and feeling good apart from mobility.

May you have many more years and get that trip to Greece as…[Read more]

Hi Ian

Sorry your a Dad has been diagnosed with Myeloma. I was diagnosed in 2010 and chose not to have a Stem Cell Transfusion. I took a Course of chemotherapy CDT two years ago and am currently in complete remission. Although the MM did considerable bone damage, I have a four weekly Zometa infusion and this seems to have kept things…[Read more]

Hi Maureen

I too am delighted that you and Ian got away. Especially after such a bad year. Isn’t it good to feel ” normal ” again!

Here’s to your futures!!

Love

Mavis x

Hi.

Just to confirm what Eve has said about Zometa. I have been on it for well over two years and was on tablet Bisophonates for a year before that. Like Slim I have no symptoms except a flue like fever the first time I had an infusion. They only used to give them for two years but have decided they are worth while continuing with as they do…[Read more]

Hi Jane

How good to hear your story I am sure it will encourage those facing SCTs especially those deciding whether to go for a second.

My story is encouraging too although nor so dramatic. I was first diagnosed three and a half years ago and am currently in full remission following CDT.

MM isn’t a good disease to have, but there is hope for…[Read more]

Hi Trigger

Welcome to you and your Mum!

I’m another one who didn’t go for a SCT by my own choice. I didn’t want to gamble quality of life for what could have been a short remission. About 14 months after diagnosis I had six lots of CDT and fortunately got into full remission (now 18 months and counting.)

It is a very personal decision about…[Read more]

Hi Michelle

Delighted for you. Long may it last.

Best wishes for the future.

Mavis

Hi Wendy

What a rotten and difficult time you are having.

The unfortunate thing about MM is it creeps up in very varied ways making diagnosis difficult as you have realised.

Do keep in touch and let us know how things go. This is not a nice disease, but there are worse, AND, we do get through all it’s challenges. I’m sure you will get lots of…[Read more]

Hi David

I’m so delighted to hear your news. I know how excited I was when I got that news. Long may it last for you it couldn’t have happened to a nicer person
I would have said so earlier had I been able to log on to see it. For reference, I managed by resetting my password.

Lots of love.

Mavis

Hi Stuart

Found this because of our conversation this morning!

I can now get on the Forum, but can’t see how to start a new topic which used to be at the top of each Category.

Thanks for all you are doing to help us.

Mavis

Hi Tom

At last I have been able to get on line to the Discussion Group so am catching up. Good luck with the treatment. Hope you get into remission real quick. My question is, if you do, why do you need another SCT now, why can’t you just go with the remission for however long?

Lots of love.

Mavis x

Dear San

I am so sorry for you that your Mum has lost her brave struggle. However, in view of the pain she has been in over the past few months and the repeated infections, I do hope there is some comfort to you in the fact she is, at last, at peace and she hasn’t had to struggle for many more difficult months in a Nursing a Home.

You will have…[Read more]

Hi Deborah

Good luck with the Trial. Hope you find some other fellow travellers out there!

Best wishes.

Mavis

Hi Andy

Happy New Year!

I do hope the new treatment works for you. It has very good write ups which is why NICE has agreed to fund it. I think it is related to Thalidomide, but I might be wrong. You are another front runner for us all.

All blessings.

Mavis

Hi Jeff

I can imagine how you feel not knowing the answer as to why you were taken off the Trial. I have learnt to be more assertive and ask “why?” I also always take a written list of the questions I want answering so I don’t forget. I nearly always see someone different, but I find having my “list” helps them to see I want to understand…[Read more]

Hi Sarah

Welcome from me. I have been having trouble getting on site lately and am only just catching up.

I came into MM the same way as M, but fortunately with no break to complicate things -only the caging in my back. I had a further trauma a year later when I again lost mobility. That’s when I starter on chemotherapy, CDT. Fortunately I…[Read more]