[mhnevillParticipant]

Hi Dave and welcome from me too!

Sorry you were diagnosed at such a young age. I also had plasmatoma, September 2010, but was just off my feet for a couple of weeks before having my op. I always refer it as having scaffolding in my spine! I then had 10 shots of radiotherepy early this year. My only treatment since has been, first bisphosate tablets, now been replaced by Zometa monthly injections, for my bones. I am still walking on two crutches, but this wasn't helped by already having four ops on my hips!

My paraprotein is now at 13, but I am resisting any treatment at the moment. Consultant is keeping me under review every two/three months. I think it is different if you are older (I'm 66yrs). Sorry you have not had a warm response from your Hospital team. What are are you in?

As to SCTs. All those on the site who have had them see to do well although it sounds a pretty gruelling experience. Have just read an article on the American "Myeloma Beacon" site about a recent Spanish Paper which suggests that those who respond well to their initial treatment do well after SCT so this bodes well for you.

All very best wishes.

Mavis

[mhnevillParticipant]

Dear Gill

Sorry that Stephen is having to go down this new road. Let's hope and pray it isn't as bad as you fear. Lets hope the reduced Dex isn't as difficult on the nerves – yours as well as his!!!

Hope this will lead to a good long remission and make it all worth while as you have both coped with so much already.

Best wishes.

Mavis

[mhnevillParticipant]

Dear Bridget

Thank you for your kind words. I feel much more cheerful now Kate and the boys have arrived, even if I did have to collect them from Leeds in thick fog!

Sorry about your rash. Hope it soon disappears. These drugs are so powerful aren't they, that they always seem to came with a price (side efects). Still my prayer is that they will really work good for you and kick you back into another long remission.

Much love

Mavis x

[mhnevillParticipant]

Hi Bridget

Good to hear how things are going. Sorry about the sickness, but you seem to be managing things with your usual determination and courage.

I was feeling a bit sorry for myself this evening as my general lack of mobility and tiredness were making it very hard to get ready for a vist from my daughter and two grandchildrenou (4 and 18 months) tomorrow for four days.

I keep remonding myself to concentrate on what I can do, not what I can't but sometimes it seems harder than others. Still, reading your post reminded me to count my blessings, as did listening to the war widows at the Service of Remebrance. At least we are here. with our loved ones, to tell the tale.

Much love.

Mavis x

[mhnevillParticipant]

Thanks for the info Helen.

Hope whichever arm of the Trial you are put on it works for you. As you know I have every admiration for those of you willing to take part in the Trials.

Here's to a "good hair day" soon!

Mavis

[mhnevillParticipant]

Hi eve and Slim

What a hard road you have both travelled to get to this point. What a relief, at last, to hear some good news that makes all the difficulties of the Velcade treatment worthwhile.

Here's to the next two rounds really knocking this dreaded MM on the head.

All best wishes to you both.

Mavis

[mhnevillParticipant]

Dear Abi

Like the others I wanted to say welcome to the site and to assure you that things are moving fast with the treatment of MM, and as Dai says, many in a similar position to your Dad have responded very well to treatment. It isn't a walk in the park, but neither is diagnosis the end of all hope.

All best wishes for Monday. I do hope your Dad warms to the Consultant, it makes such a difference.

Mavis

[mhnevillParticipant]

Hi Helen

So glad you are now so well on the other side. I do understand about the hair though. It would be the thing I would hate the most.

Take care and enjoy getting glam again!!!

What does the Trial you are going on consist of? Is it a maintenance thing?

Whatever, very best wishes and thanks for sharing all the ups and downs. May there be many more ups in the future.

Love

Mavis

[mhnevillParticipant]

Hi Dai

So sorry that your bad cough is still hanging on. Thank you for making so much effort to nearly make it. You must be very frustrated having put so much work and effort into preparing, but as others have said, there will be other opportinities.

Do take care of yourself – I'm glad Janet is keeping a sensible eye on you.

Best wishes.

Mavis

[mhnevillParticipant]

Hi bridget

Good to hear from you again even if things have been a bit rough. If I could knit I'd knit you a Blue Peter badge!

10 out of ten for effort with the injections.

Much love.

Mavis

[mhnevillParticipant]

Hi Sue
Like everyone else I do hope things turn the corner for Michael and for you re the work situation. It always seems crazy that they don't let people who want to, go, rather than folk who are desperate to keep working.

Keep in touch.

All blessings to you both.

Mavis

[mhnevillParticipant]

Dear Min

I do hope that by the time your holiday ends you feel really revitalised to face the long window. I started to look at winter eveenings differently when a friend, who lived on her own, shared how she loved pulling the curtains and settling down in front of the warm fire and could just please herself.

I think you are dong really well considering the hard time you have had.

All blessings.

Mavis

[mhnevillParticipant]

Hi Ted

Great news and it must be a great relief to get another reprieve!!! Long may it last. It also serves to encourage me.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Gina

So sorry things aren't bettter for your Mum, but you are doing a very loving thing by having her home. I do hope she manages to stay at home now and doesn't have to go back into hospital.

Have a lovely wedding day in spite of everything.

All blessing to all the family.

Mavis

[mhnevillParticipant]

Hi David

Good to welcome you to the site. It is an encouragement to newer members to have someone who has successfully gone through what you have.

Long may your remission last!

Very best wishes.

Mavis

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