Hi Wendy

Can understand your worries. Strange to be saying that I hope it is something like arthritis which I assume attacks folk with MM as well as others.

I get lots of bone pain and most are my arthritis, although I am riddled with lessions in my bones, including in my head! Trouble is, I find taking too many pain killers causes worse…[Read more]

Dear Mike

Just hope you have a lovely time with your family over Christmas to give you something to hold onto when you are having a grim time in the New Year.

Very best wishes.

Mavis

Hi Tom

May I, alonside everyone else, welcome you to this Site – sorry you have had to join – so young too.

I am 67yrs and, like you, had a plasmacytoma needing surgery followed by radiotherepy. I them had approx 16 months before next crash! Then followed six cycles of CDT. I am now PP free and hoping for a long remission and working on…[Read more]

Hi Emma

Sorry your Mum is having such a grim time. I can understand where she is coming from about quality of life.

One thing, as they have already identified blood clots they will be extra careful in any procedures. I have had four hip ops – at least they can do them by epiduaral. I had such dire warnings before my forth operation (I was…[Read more]

Hi Tom

Happy many returns for your stem cells!!!!

Thank you for your unfailing cheerfulness.

Best wishes.

Mavis x

Hi Dai

Just caught up with your news. Sory about the Revlimid, but maybe the Bendamustine will be even better for you. You say that you have only had eight months from Rev, but in fact you are still going strong – well strong in the fight anyway.

Hope the Thalidomide doesn't cause problems this time.

Rooting for you as always. I'm…[Read more]

Hi Sue

Just posting to ask how things are with Michael. I do hope and pray that as you approach Christmas there is something to look forward to.

Much love.

Mavis x

Hi Shelly

Thank you for taking the trouble to post at what must be a very sad time for you. I'm so encouraged that your Mum coped so well with all the treatment. How long did she live post diagnosis?

I know your continued contributions to the site will be welcomed.

Very best wishes to you and all your family.

Mavis x

Hi Dai

This C Diff seems to really have got you "on the run"! (Excuse the humour!!) So sorry it keeps coming back. It's this downside of antibiotics that they keep warning us about. We do need another breakthrough like when penecillin was discovered. I wonder if there is research into this?

Glad you are soon to be back driving. I…[Read more]

Hi Sarah

I had six rounds of CDT and this banished the PP completely so for the time being my only treatment is a four weekly infusion of Zometa for bone strengthening. Like your Mum, I have decided not to go down the SCT route and feel very comfortable about it.

You don't even have to get down to zero PP to be able to have a drug free…[Read more]

Hi Andy

Like the others, I am gutted thst you can't find a donner match. However, I'm glad the drugs are working. The donner transplants don't sound like a walk in the park, so maybe, with your battered bone marrow, going other routes may not be such a bad thing, IF they can find a combination that whacks the blasted MM into touch.

Very…[Read more]

Hi Sarah

So sorry you and Henry are experiencing the down side of the NHS just at the time when you need it to be at its best. I know that feeling of frustration and feeling powerless to change things.

I really admire Henry for keeping on working. I do hope you don't have finacial pressures as well as everything else.

I do hope and pray…[Read more]

Hi Vicki and Colin

Somehow I have missed all your batles witht he SCT thus far. Just wanted to sign on and say that I do hope things get steadily better for you and that a really long remission make it very worth while. I have just been reading of one of nine years.

Lots of love to you both.

Mavis x

Hi Jo

Good to hear news of you! Do hope this next round of treatment gives the old MM a run for its money!! They keep saying that MM is on the verge of becoming a chronic disease let's hope it is for us even if it is a real drag at times!

Much love.

Mavis x

Hi Carol

Just caught up with this post. So sorry to hear that you have relapsed. What we all dread. Never the less you sound as if you are coping well now you have got over the initial shock. Well done! I do hope the PAD works well for you. From all I've read, I wouldn't worry that you are putting off thughts of having another SCT after…[Read more]

Hi Kerry

Sorry Melvion is having such a hard time of it, and you too, as you give him such wonderful support.

Is there the possibility of another Surgeon, elsewhere, doing the operation on Melvin's spine? We have some marvellous ones at LGI (Leeds) They did the operation to remove the tumour on my spine (T10 I think) and built some racking…[Read more]

Hi Babs

Welcome to the Site, but sorry you have had to join it! You are well on with the journey, and should be able to get planning now for some enjoyable happenings. None of us would chose life with MM, but we are all committed to making the best of our lives as we can, and we can spur one another on.

Lots of love.

Mavis x

Hi Kes

Welcome from me too, and as others have said, we are all here to support you all we can.

Goodness, as you have got through to round five of CDT you are doing well. Those last weeks go very quiclky. I remeber counting the days off: nineteen, eighteen etc!!! Just be warned you could have a bit of a dip as the chemicals work their way…[Read more]

Hi Sue

So glad to hear Michael is now home. I lit a candle for Michael, at church this morning, and prayed for a miracle that you could all have some lovely days together.

Love to you all.

Mavis xxxx

Hi Sue

Couldn't sleep well last night – unuisual for me, so was thinking and praying for you and Michael a lot. Do hope Michael is calmer now. It is a time when he could naturally feel frightened. Hope you are able to spend time with him, – and perhaps other members of the family. Is it your daughter in the photo with you?

Lots of love…[Read more]