Hi Eve,

Yes, good to see you posting still. Like you I often think of lost friends all who helped me in my early days. Don’t know if you watched the new awareness video. I find it very depressing. Glad it wasn’t the first thing I read on here.

Take care. You are special!

Love Mavis x

Hi Both of you newbies

Be encouraged. The treatment does work even if it feels tough at times. Just do watch out for infections. I got shingles and didn’t recognise it straight away so was not treated as soon as I might have bee. I have now been in remission for two years. I am full of lessions, but breaks which I put down to the regular…[Read more]

I’m also sorry to hear you dad has lost his battle against MM. I am glad you were able to be with him right near the end. I do hope his funeral will be a celebration of his life.

Love Mavis x

Done. Good lunch! Mavis

Hi Izzie

Someone else not sleeping! And I can’t even blame it on Dex! Like Andy, I find the balance between pain killers and feeling zonked during the day, and then awake at night, a hard one to find.

I am so pleased to hear the SCT did its magic for you. It is funny, some Consultants don’t like to use the word “remission”, but that must be…[Read more]

Hi Stu

Sorry to have to welcome you here, especially as you are so young. However, as has lready been said, if your early treatment hits the MM hard before any bone or organ damage you stand a good chance of a full remission following treatment. Do you know what the long term treatment plan is for you.

Don’t be downhearted. I can tell you,…[Read more]

Dear Eve

I do send you my deepest sympathy that that which you had both expected and dreaded has happened. In spite of a valiant battle by both of you, Slim has finally been defeated by this dreadful MM.

I do hope, that as you plan his funeral service, it may come together as a celebration of a life well lived and of the strong bond between…[Read more]

Hi Susie

It may be worth taking part in the antibiotic trial. If you did get the antibiotic it could stop you getting shingles or other complications of being on chemotherapy.

Best wishes, whatever you decide.

Mavis

Hi David

Thank goodness for some good news at last!

Hold on in there.

Beast wishes. Mavis

Hi there,

I always think we are the key player in any decisions made about out treatment. Certainly if/when I relapse I shal try to get CDT again as it brought me into complete remission this time.

If you aren’t happy with what is being suggested and team are not willing to discuss things, you could always ask for a second opinion as several on…[Read more]

Hi Helen

Just to put another view! I was on CDT for six rounds. It wasn’t easy as I had a metallic taste that meant I only fancied strong flavoured food, my hair thinned, zi got shingles and spent one week in hospital with sickness, but having said that, I didn’t really find it too hard to cope with. It got me into complete remission in which…[Read more]

Hi Helen

What a lot to cope with. The Indurance thing is a real trial isn’t it. I can’t get insurance because of all my health issues. I take a chance when I go to Luxembourg, but it is different because we are at my daughter’s. Bit more problematic if you are “on your own”, as it were. One of my 50 – List for Life things is to get to Italy…[Read more]

Hi Susie,

I can see that the site of your plasmacytoma is very differently sited than mine. Mine was golf ball size and wrapped round one of my vertebrae, can’t remember if it was T10 or T12. The thing was it was also around the spinal cord so it was very dangerous when they removed it. However, I had a brilliant surgeon at a Leeds LGI and…[Read more]

Hi Andy

So pleased to catch up with your very encouraging news. So glad you ans Steph are able to celebrate in an appropriate way!!

Do hope you can plan another trip soon.

Very best wishes. Yes, every day is a gift!

Mavis

Hi Jeffery

Well, by default you have had to take things in your own hands. Sometimes though, I feel it is best. Can you tolerate something like Tramadol till you can build up to your original morphine dose?

All best wishes.

Mavis

Hi Anthony

Sorry you have come out of remission so quickly. A real bumber. I do hope that Velcade does suit you and foes get you into a full remission without PN.

Very best wishes.

Mavis

Hi John

Sorry your Dad has been having such a bad time. It sounds as if the chemo is doing the trick. The problem is, following remission, is that improving mobility depend on getting supportive physiotherapy. I have re mobilised twice from MM and four times following hip operations. It isn’t a bed of roses, but you can improve whatever your…[Read more]

Hi Susie

So sorry to hear you have progressed to full blown MM. Although you must have known it was a possibility it doesn’t stop it been a body blow.

Sorry to hear you have a plasmacytoma on your spine. How are they going to treat it? Are you to have an operation? I had a plasmacytoma removed from my spine four years ago. It was then I…[Read more]

Hi Hmj

I am so sorry to read of your Dad’d passing, but it is obvious he fought this dreadful Mm to the last.

It was generous of you to post at this sad time, because as Tony says, the story of your Dad’s 19 years will be an encouragement to so many of us.

I am sure that you will have inherited your Dad’s strength and determination to make…[Read more]

Dear Sarah,

I believe it is your beloved amsrk’s service today. If I have got it right, I pray you will find much comfort, not only in the words of the service that Mark had lovingly prepared, but also in the many friends who will come to support you.

You are quite right! Our faith that death is not the end, gives us courage to go on, but it…[Read more]