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

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

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

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…[Read more]

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

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…[Read more]

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

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…[Read more]

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

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

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

Hi Helen

So glad to hear your blood readings were better this time. It is a roller coaster isn’t it! I remember you saying that once before.

I will hope and pray that the drugs will do the trick and bring the numbers down. I can see that the thought of an allo is so enormous. I do hope you find another way through. If only you can stave…[Read more]

Hi Les

Just read your post. So sorry for your loss especially as it came so suddenly. I suppose one comfort must be ( and I say this from a patient’s point of view,) at least your a Dad didn’t have months of fighting off the inevitable.

Be kind to yourself. Loss doesn’t go away over night, how can it. Keep bringing good memories of your Dad…[Read more]

Hi

I had the same problem with CDT. The only things I really enjoyed were salt and vinegar monster munches. I, however, was glad of the resultant weight lose! Only sorry I have piled it back on again.

Sorry you are having the same problem with your next regime. I am fortunate that I am still PP free so no more treatment yet.

All best wishes.

Mavis

Hi Sarah

Do hope M is coping with the drastic treatment as well as can be expected.

Your story of the rainbow reminded me that, when I was first taken to hospital, prior to MM diagnosis, I saw a rainbow, and subsequently, as I was being wheeled down to theatre to have my plasmacytoma removed from my spine ( and I’d been told it could go either…[Read more]

Hi Sara

Hope you manage to get an answer about MM soon. It must be very worrying having it hanging over you.

PP blood readings aren’t done as routine. I think this is because of cost! Also it takes about 10 days to get the results, unlike others which they can do immediately.

Do let us know how you get on.

Very best wishes.

Mavis

Hi Graeme

A belated welcome from me. CDT knocked my MM completely back to ” undetectable” hope yours does the same.

Very best wishes.

Mavis

Hi Tom

Hope your new treatment is doing its magic and brings your readings right down.

What I want to know is, why does MM and treatment make folk like you lose weight, while others, like me, just pile…[Read more]

Hi Dick

Haven’t been on for a while. Sorry to hear your SCT didn’t last as long as we all would have hoped. At least your Consultant seems to be ” working with you” which is encouraging. Do hope the drugs get, and keep things stable.

All best wishes.

Mavis

Hi Laura

Thanks for this info. As you say, let’s hope we see a UK Trial soon. I know I am always saying it, but I feel so grateful to the researchers and then patients who take part in Trials.

Hope things are good with you at the moment.

Best wishes.

Mavis

Hi Izzie

Yes, aches and pain are part and parcel of my MM. I have changed my pain control recently. I now take tramadol and paracetamol. I stopped taking anti- inflamatories as I am worried about the effect on my kidneys. I have just started sone Alexander Technique lessons to see if that will help.

I’m surprised you aren’t still on Zomets.…[Read more]