[mhnevillParticipant]

Hi Carole

Just to put another perspective. I got into remission after six lots of CDT, last summer, didn't have a SCT. I am 69. There are other ways through.

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Andy

Just wanted to add my good wishes. Hope the operation makes a real difference to your pain.

One thing about scooters, they can open up a very restricted life. You may have read, I have now taken it to Luxembourg twice and am planning my third trip.

Yes, every day is a gift.

Mavis x

[mhnevillParticipant]

Hi Helen

Glad you are hanging in there even if the treatment sounds grim. How many rounds have you got to have? Is there an end in sight?

Lots of love.

Mavis xxxxx

[mhnevillParticipant]

Hi Sallyann

When I was diagnosed with a plasmacytoma, I also had no clue what I was dealing with. I think there is a Leaflet on the Site about them, but before I knew about MUK I track
Led the Internet frantically like you.

Plasmatomas are cellular masses formed by rogue cells. They either form as lumps in the tissues, (sounds like what Daz has. Is it around his throat/shoulder area?). They can also form around bones. In my case it formed around one of my vertebrae and caused restriction of the spinal cord. This meant I temporarily lost all mobility. I had to have an operation to remove the growth and had 10 fractions (sessions) of radiotherapy as soon as my back had healed. This was three months after original diagnosis. Diagnose of Myeloma followed diagnosis of plasmacytoma by about a month (following a bone marrow biopsy.)

Which hospital is Daz under? Can he change. Someone on here is under Hull and I think they find it OK.

This isn't a death knell, so keep strong for one another.

Love Mavis x

[mhnevillParticipant]

Hi Mandy

Of course the carpal tunnel syndrome developing might have had nothing to do with the drugs. I have had it for many years. Just had a really bad bout and had second injection into my wrist. It really acts like a miracle. Surprised they didn't suggest that to you first.

However, I've heard very good reports of the minor operation so hope you get some good nights soon. It really is one of those things that destroy quality of life.

Long may your remission last. I am now a year on.

Love Mavis x

[mhnevillParticipant]

Hi Maureen

So glad you have got a date for Ian's discharge. It gives you both something to aim for. Well done for putting your notice in. I'm sure you won't regret it. There is still a lot of living for both of you yet.

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Scott

Hope things are still going well with you.

Hi Jo

How are things with you? Are you tolerating the treatment any better now?

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Max

I think you can have plasmacytomas in the groin area, but the important thing is for your mum to tell the Dr about it. Better to report something that isn't important than let it be missed.

More love.

Mavis x

[mhnevillParticipant]

Hi Lynne

Sorry to have to welcome you to this Site, but I am sure you will find lots of help and support here like I have done.

Sorry you have joined us so young, but I am always inspired by Kathy Giusti founder of MM Research Foundation. She was diagnosed, in the 90s, at 37 when her daughter was only one. She was told to expect three to five years. Having a background in pharmaceuticals she determined to improve the odds. She is still going strong after various treatments and the Foundation has raised nearly a quarter of a million dollars and funded research that has led to four of the new treatments.

There is life after MM. Keep strong.

Love Mavis x

[mhnevillParticipant]

Hi Tom

I have been pinning my hopes on the American "Black Swan" Project which is searching for a cure. This Canadian news is great.

We just all need to hang in there!

Best wishes to you.

Mavis

[mhnevillParticipant]

Hi Barbara

So sorry to hear that your husband's pp levels have started to rise again. 10 doesn't sound high. Will he be able to wait and see how things progress before he has to consider any further treatment?

Keep strong!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Max

It sounds to me that your Mum might have spinal cord compression. It could be that which made her legs go from under her. Does she respond if you tap her knee. This as how they diagnosed the tumour on my spine – my legs didn't respond. Incontinence can also be a sign.
Why not ask her Dr if it could be a possibility.

Love to you Mum.

Mavis x

[mhnevillParticipant]

Hi Tracey

Sorry, don't have an answer but wanted to send my love to you and your Mum. Have you thought about ringing the Nurses on the Help Line?

Lots of love.

Mavis xxx

[mhnevillParticipant]

Dear Mari

Just wanted to send my love too at this very sad time. Although to lose Stephen is so devastating, I am glad his going was gentle. That is what I wish for us all.

I do hope his funeral is a celebration of his life and the love he was held in.

You will be in my prayers.

Love Mavis xxxx

[mhnevillParticipant]

Hi Jules

Just read this after I had posted on your other thread. I have had experience of elderly folk hallucinating when they have infections. The thing is, it is no good challenging the things they say, asvtonthem they are real! I remember one parishioner who was seeing green chickens under the bed opposite and was quite annoyed that his wife couldn't see them!! All you can be is a calm reassuring presence and surround your Mum with a bubble of love.

God bless all of you in these hard days.

Love Mavis xxx

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