[mhnevillParticipant]

Hi Dave

Welcome! It will be encouraging to folk reading your post that you have managed to dance with this dreaded MM successfully for so long.

As your PP levels are so low and you have no other symptoms, why would you be thinking of any treatment at the moment?

I haven't had a SCT. My current PP is 13 and I have no inclination to go down the STC route even if offered me at a later date. I am 67!

All best wishes to you.

Mavis

[mhnevillParticipant]

Hi Dai

Maybe things will work out for you for once. When you have the screenings you might be accepted on the Trial without the "p" results!!!!!

Sending lots of positive vibes for Monday.

Mavis

[mhnevillParticipant]

Dear, dear Bridget.

Will pray that this one dose of radiotherepy does have a good effect on the pain, also that they will agree to another MRI. So sorry you need one as I know you find them so painful, but at least it will be able to give you peace of mind. I'm glad that NHS money is being spent on you – it couldn't go to a better person.

Sending you so much love.

Mavis xxxxxxxxxxxxxxxxxxxx

[mhnevillParticipant]

Hi Tina

I can see that thinking about the Trial is daunting, but at least you know that you will be monitored very, very closely and doses will be adjusted if side effects are too bad.

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Tom

Like everyone else I am delighted at your news. Fancy, nothing at all! I think once monthly zometa is good, but nothing, that's amazing! Couldn't happen to a nicer person!

Also hope we still hear from you from time to time.

Very best wishes for a long, long, phase of nothing.

Mavis x

[mhnevillParticipant]

Dear David

Hope you soon feel better.

Mavis x

[mhnevillParticipant]

Hi Graham

Glad you feel you are being treated like a human being at last by NHS. All the best for your tests however and whenever they happen. Must admit, waiting isn't fun, but then I remind myself I don't want to wish my life away.

Your have probably read all about MGUS. It isn't MM, but there is a belief about now that we will all have passed through a MGUS stage, probaly unknown and undiagnosed. On the sites are various progression rations for each year.

All best wishes.

Mavis

[mhnevillParticipant]

Hi bridget

I have enjoyed the escapism too! I had read the bookd before, as my sister in law was a midwif around that time. The series is very true to the book.

I agree with you, it really brings home how life has changed. I loved it when the phone was grabbed out of the hand of the lady in the phone box because "it is an emergency!" Now everyone seems to have a phone hanging on their ears all the time!! One of my pet hates – people texting in a Restuarant. A friend was telling me that at Christmas dinner three of her grandchildren were texting.

Makes me sound like a grumpy old woman! Mind you, I am 67 this next week so perhaps I am!!!

Enjoy the next episode tomorrow. I will think of you as I start to watch.

Much love.

Mavis xxx

[mhnevillParticipant]

Hi Dai

What a lovely song. Hang onto it as you wait for your appoinment on 28th.

I had a blast from the past today. My brother is visitng and we were listening to Peter, Paul and Mary. Why do songs from the past often seem so much better?

Keep singing!

Love

Mavis

[mhnevillParticipant]

Hang in there Ros!

One day Rachaeel will come to her senses and realise she misses her Mum. I think sometimes daughters can't cope with their mother's grief and have a funny way of showing it. If they were fond of their Dads they somehow take their death out on their mums. I have seen it before.

Love

Mavis x

[mhnevillParticipant]

Hi Min

I had missed your earlier post. I am so glad you are getting through even if you feel you are living life in slow motion! You are one brave lady and I am glad life is throwing some good things at you as well. Mind you, I can't imagine anyone being able to take five large dogs for a walk at once!!! We find our little yorkshire terrier enough for us. Mind you, these days, I tend to sit in the car while Gordon does the walking.

All best wishes as you rebuild you life. Of course it isn't what you would have chosen, but it sounds as if you have a lovely family and good friends to support you.

Much love.

Mavis x

[mhnevillParticipant]

Hi Zoe

So sorry you have had to join us especially as Dan is so young.

I like Dan like to read everything I can on MM. I find the Myelome Beacon (an American site) really helpful as they have threads to televised discussions between Drs on various approaches to treatment. In thsi country they aren't as keen on Allo transplants – I think because of the high risks, but even in America, because so many new treatments are coming on line, other approaches seem more attractive.

Has Frank asked about going on a Trial. This is one way of being involved in front line treatment, although having said that, many folk on here have had very good front line response to CDT.

I don't know about getting "easier", but you do get your head around ling with MM in time. Most of us take the line it isn't going to dominate our lives. I have learnt to make the most of good days – especially if the sun is shining!

All good wihes to you both.

Mavis

[mhnevillParticipant]

Dear Nikki

Sorry about your Aunt. It sound as if she is having a dreadful time. I am sure they will get on top of her infection soon and she will be able to resume her treatment. They will no doubt also give her monthly infusions for her bones which should help prevent more problems.

Do you get on with her daughters? Maybe they could tell the Hospital it is alright to talk to you. Mind you, these days, patient confidentiality is almost taken to extremes.

You auint is lucky to ahve a caring neice.

All best wishes to you both.

Mavis

[mhnevillParticipant]

Dear Bridget

Do hope the Dex has stopped messing your brain and that you get a good week-end.

Keep strong we love you. You know what they say, you can't keep a good woman down!

Mavis xxxx

[mhnevillParticipant]

Hi Sarah

Do hope Henry's infection is under control and that nothing stops the SCT going ahead. I can understand how he feels about Hospital food – I always loose weight when in hospital. It is one of the bonuses for me!

Hope SCT leads to a very long remission.

Best wishes.

Mavis

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