[mhnevillParticipant]

Don’t know about bites, Carol, but enjoy Croatia!

Although I didn’t have SCT I still am more open to infections. I have had cellulitis of the legs several times.

All good wishes for lots of good days.

Mavis

[mhnevillParticipant]

Hi Sarah

I had six lots of CDT starting in March 2012. Following this I have continued in complete remission. If I remember correctly my PP levels went steadily down from about treatment number three.

Main side effects for me were thinning hair, metal taste that made food less appetising (I developed a craving for Salt and Vinegar Monster Munches!) and I got shingle which I didn’t recognise at first.

I survived it reasonably well and didn’t have the Dex days that many people describe.

Do ask if you have any specific questions.

Best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Maj

Just caught up with this post. I do hope your husband’s SCT went according to plan and that his after effects haven’t been too dramatic.

Best wishes to you both.

Mavis

[mhnevillParticipant]

Hi Gill

Thanks for this. It is good to have confirmation of something I vaguely remembered, that you could revisit CDT. Certainly if/when I relapse, I will ask about it. Not without its problems, horrible taste, thinning hair and shingles, but six lots brought me into complete remission the first time.

I do hope your Mum does well on it. I think you can ask for a lower dose of a Thalidomide if nueropothy becomes a problem.

Do let us know how your Mum gets on.

Love to you both.

Mavis

[mhnevillParticipant]

Hi Victoria

Just caught up with this post. Has your better half checked this out yet?
As Helen says, better safe than sorry!

Hope all goes well.

Mavis

[mhnevillParticipant]

Hi Graeme

This is interesting because infections are the real bug bear of MM. I always feel so grateful to all of you who take part in a trials. It hasn’t been relevant to me, but I feel I’m conducting my own – MM without SCT!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Graeme

So glad you have had no complications with the chickenpox. Don’t think I have caught on what TEAMM Trial is, but hope you are on the “real thing” and that it works well for you.

Keep smiling!

Mavis

[mhnevillParticipant]

Hi Vicki

Yes, you are right I didn’t have an SCT. I had CDT and six lots got me in complete remission and so far I have done 21 months and counting. I’m still having hing four weekly Zometa infusions. I’m now nearly 4years post diagnosis so feel grateful. Not an easy ride, bit I’m still hear to tell the tale!

So, there is lots of hope for Colin.

Enjoy all the life you can together. That’s our philosophy. We have just spent the enormous sum of £4000 to buy a new Quingo Mobility Scooter That parks itself in the back of the car by remote control! It is great as Gordon doesn’t have to lift it in and out, like he did with my old one. Also, I have already experienced the freedom it gives as it can tackle hills and it is quite hilly round here in Bradford.

Love to you both.

Mavis

[mhnevillParticipant]

Hi Graeme

Glad you got to the bottom of the itch. Wonder if it will make you vulnerable to Shingles while on treatment? Watch if you have any aching or rash round your middle once chicken pox has gone. I had thought chicken pox gave you immunity to shingles, but apparently not!

Take care!

Mavis

[mhnevillParticipant]

Hi Susie

I also have OA. I asked my Consultant if I could get new bone pain while in remission, as my back pain had got considerably worse. I thought he might order another X-ray. In fact, what he said was encouraging. He said, as I was in remission, there was no PP in the blood to do bone damage so it must be down to OA.

When I had the MM pain around my ribs it was like a deep bruising type pain!

Hope things go well with you.

Mavis x

[mhnevillParticipant]

Hi David

Fabulous news. Enjoy the treatment free days and this comes with a hope you won’t have to have any treatment for your prostate problem.

Best wishes.

Mavis

Hi Andy

So glad to hear your numbers are at last decreasing. Long may it last.

Seize every day!

Mavis

[mhnevillParticipant]

Hi Kay

I’m with you. The more knowledge the better! It sounds like someone should edit the
“professional’s material” in a form that is suitable for the lay person who wants to be as clued up as possible. It strikes me some new sort of flow chart is needed.

Like every other resource, only those who want to need access it.

Hope things go well with you on the next part of your MM journey.

Love.

Mavis x

[mhnevillParticipant]

Hi Vicky

I’m also very sorry to hear about Colin’s latest scare. I do hope the figures settle down so he doesn’t have to rush for more treatment.

Glad you got your holiday in. Time to plan the next one and one in the eye for MM!

Very best wishes.

Mavis

[mhnevillParticipant]

Hello Frances

My husband, not a MM sufferer, had dizzy ness when they put him on Benza……… He had to come off it.

I bet it is the drugs making your mum feel heavy. Hope things improve soon.

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Angela

So glad for you both. Enjoy your future. It’s great not having to work!

All best wishes for a very long remission for Graham.

Mavis

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