Hi Terry

Like Jean, I can't offer any information but just wanted to show some solidarity to you in your struggle. Do hope the funding comes through and the Bendamustine does the trick. I know Dai is starting on it soon so should be able to give you some feed-back eventually.

Congratulations at keeping on with the car restoration – she…[Read more]

Hi Dai

What you say seems so much sense. I wonder how we can make this particular opinion heard. Is this something Myeloma UK could help us with.

In the USA they have telephone ring rounds with Consultants where such issues can be raised. I guess that here the Consultants are so over-worked that they haven't the time for such luxeries.…[Read more]

Dear Emma

Glad to hear that a pathway has been decided for your Mum, and that, although not the brightest news to be in hospital for four months, at least she will be in the "safe" place.

Do hope the chemo does its magic during this time of waiting.

Lots of love to all the family.

Mavis x

Hi Peter

Thanks for the post. I shall look forward to hearing the link when the lounge is Christmas preparations free! Gordon has just put the first forty lights on our tree!!

I am always interested in what Dr Berenson has to say on this subject. I am one of the "less is more" folk and decided against pressing for a SCT. I guess age has…[Read more]

Dear Dai

At last some really good news from you. I couldn't be more pleased. You so deserve for things to go well now and I hope that Bendamustine breaks all records in its positive effects on your MM.

AND, I know what you mean about keeping Revlimid in the back of your mind for the future, but hopefully, after the Bendamustine you won't…[Read more]

Dear Jet

Have been following your campaign. Do hope the desired young potential donors are rsponding.

And from a Christian, Happy Christmas!!!

Much love.

Mavis x

Dear Michelle

What marvellous news. I do hope and pray you continue PP free for many years to come.

Have a very special Christmas.

Love Mavis x

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