[mhnevillParticipant]

Hi Bridget

I too had you on my mind. I do hope and pray that you find something to get this pain under control soon. since I was diagnosed and had op to remove tumour my pain has always been bearable, if limiting, but as others have siad, i have always found using several pain killersw together seems to work best, Do hope they increase your dose or givee you something to add to it.

Love and prayers.

Mavis xxx

[mhnevillParticipant]

Dear Angelina

Just to say I am thinking of you John and the girls at this very difficult time. May you find the strength you need and an assurance that this life isn't all there is. Love never dies and your Memory Book will be ione way of keeping it alive.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Claire

I can understand you being confused about your Mum's diagnosis. The good thing is that two years later you are here rooting for her. It is a difficult disease to understand because everyone's path through it is so different.

You have come to the right site. Ask any questins and I'm sure someone will be able to help'

Best wishes to you and your Mum.

Mavis

[mhnevillParticipant]

I would find this helpful too.

Thanks.

Mavis

[mhnevillParticipant]

Hi Jo and all

I'm interested that your MM has plateaued. What numbers are your Para protein on? I haven't started treatment yet and I'm very committed to the theory of "as little as possible and as late as possible" so i found Patrick's blog encouraging.

I do worry about the different stories I hear about CDT. I'd love to know what proportion of folk go well with it and no side effects. If I hadn't stood out I would have been on it early this year. I was told there aren't many side effects, but it is not what I have gathered from all of you.

What would we have to do to get a more individual approach agreed by NICE. I was inspired by meeting Marie, one of the Velcade three. Change can happen.

Of course, I appreciate it that being an individual disease therefore putting clinicians under pressure, but surely there is a way ahead.

So appreciate all your views.

Mavis

[mhnevillParticipant]

Hi Dai

So glad to hear the frightening tumour has taken flight. It gives me great encouragement to know that these drugs actually do work in spite of all the side effects which terrify me. It will help me when my time to take them comes.

Do hope things continue to improve for you and that our "bard" continues to be inspired!!!

All best wishes.

Mavis

[mhnevillParticipant]

Welcome Ali and Guy from me too. Have just picked up your post.

It is all such a shock at the beginning and most of us had never heard of MM before diagnosis, and as you say, all the jargon is mind blowing. I still ahven't got my head round it all.

However, I do commend this site and urge you to ask whatever you like, or say whatever you kife. People are so supportive.

In a way, you will probably both feel better once a treatment plan has been agreed and is underway.

All blessings to you both.

Mavis

[mhnevillParticipant]

Dear Tina

I am so sorry that Ptrick has at last lost the battle he fought so bravely.

Sincere condolences to you and all the family at this very sad time.

Very bast wishes.

Mavis

[mhnevillParticipant]

Dear Bridget

Just caught up with your troubles. So sorry because you are so brave ans an inspiration to me. Hope improvement continues.

Thinking of you.

Love

Mavis x

[mhnevillParticipant]

Dear Eve

Have been off site for a while. Just caught up with all your troubles.
Just to let you know I too am thinking positive thoughts for you and Slim. I sympathise with your wish to get him safely home as soon as possible. And they say the NHS is safe in their hands!

Love
Mavis

[mhnevillParticipant]

Hi Jean

Hope Frank is right and it is a pulled muscle! But, whatever, I hope you can still stave off treatment.

One thing I can't quite work out is if chemo helps bone pain anyway as lots of folk on drugs still seem to have lots of pain. Perhaps someone can enlighten us.

Very best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Gill.

What to say to you and Stephen? No words help and I feel sure it is worse for the care giver.

Yes, living in the moment is the best each of us can do with this horrible disease. Blessings as you try to do this. I have found the sunshine has helped in some ways, but has also reminded me of what I can't do!

All blessings to you both.

Mavis

[mhnevillParticipant]

Dear Gaye

Just as few from me too!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Happy Easter.

Mavis

[mhnevillParticipant]

Hi Keith (Via Gill – aren't our carers wonderful!)

sorry to break into your post to reply to Debs.

Do hope your second half of Velcade plus goes more smoothly and gives you a good preparation for you eventual SCT.

All blessings to you both.

Mavis

[mhnevillParticipant]

Hi Debs

Hope you have told "them" about your suspicions of nueropothy as everything i have read, especially of US site, says tell folk soon as you might need to decrease dose.

PN is something I really worry about when I have to start treatment as I alreaady have some nerve damage.

Yes, I agree with you – use of PP numbers seems very different with different people. Mine is now 8/9 and my Consultant is agreebable to me waiting and seeing! I am in no hurry to start treatment.

Deabs, all the best to you. Keep smiling and praying.

Blessings.

Mavis

[Author]

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