[mhnevillParticipant]

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

[mhnevillParticipant]

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 the business with the bons and appears to have an anti MM effect. As with all drugs there are possible side effects, but as your husband’s MM is very much bone related, I would say it is a risk worth taking.

When my MM progressed, after removal of a spinal plasmacytoma eighteen months before, my Consultant said I could potentially suffer stress fractures at any time because I had so many bone lessions. I haven’t had a single one. I put that down to Zometa so I continue with the four weekly infusions.

I do hope your husband’s treatment goes well.

Best wishes.

Mavis

[mhnevillParticipant]

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 which we must all be thankful.

I do hope you get fitter and lose weight for your son’s wedding! The latter is not easy this time of year!

Love.

Mavis x

[mhnevillParticipant]

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 SCT. Some Consultants are not doing them for younger patients because there are now many more options.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Michelle

Delighted for you. Long may it last.

Best wishes for the future.

Mavis

[mhnevillParticipant]

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 support here.

Love.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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

[mhnevillParticipant]

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 so many good memories of your Mum. Cling to these, they will help you through. Listen for “her voice” telling you how to be strong.

Death never has the last word. Our loved ones live on in our love and in our memories, and in the memory of God. I do hope your mum’s funeral is a celebration of her life.

Lots of love at this difficult time.

Mavis xxx

[mhnevillParticipant]

Hi Deborah

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

Best wishes.

Mavis

[mhnevillParticipant]

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

[mhnevillParticipant]

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 exactly what’s happening to me.

Couple of things I have learnt from the Site over the years are I. Many folk don’t get into complete remission yet carry on for a long time as if they were. ii. That sometimes PP levels continue to fall after treatment is complete.

Don’t be too down hearted. Maintenance is a fairly recent notion and some would say it is better to have as long a drug free life as possible.

Think of it like this, you will be closely monitored and there other drugs in the arsenal for later if you need them and more coming on stream all the tome.

All best wishes.

Mavis

[mhnevillParticipant]

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 got into remission after six lots.

I got no direction about food, BUT I found I lost my appetite because I had a horrible metallic taste.

I had a fever after my first lot of Zometa, but I have only had it once since and I have been on it for well over two years. at the time of starting chemo I was full of lyric lessions, including in my head(!) and my Consultant was very worried I would get stress fractures, but I haven’t. I’m sure that is down to the Zometer.

Getting your mobility back is a long haul, but the proper exercises do help. I am much older than M, but I rely on crutches when out, for very short distances, but had an electric scooter, that goes into the car boot, to give me mor freedom. We have even taken it abroad. (Free on the plane!)

They do now seem to be using Velcade as front line drug. Supposed to be very good for those going to have a SCT. Is that the idea for M? Do take heed to the advice folk give about neuropophy. My husband has it as a result of diabetes and, if it gets bad, it can be very debilertating.

Very best wishes to you both.

Mavis x

[mhnevillParticipant]

Hi Tina

Also so sorry you have been in hospital. I’ve had a bad cough, but fortunately although I still haven’t got rid of the cough I have been OK apart from that.

Do hope that this apart life is going well for you.

Love.

Mavis x

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