Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also…[Read more]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only…[Read more]

Hi David

Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.

I would…[Read more]

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

After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can…[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]

Hi Susan

I’m sorry no one has answered. I guess that what you asked is a bit out of the usual. Ellen on the Help Line is probably your best best.

As I understand it Mm can either be monitored via PP if folk secrete it, or by light chain readings if they don’t. However, this time my Consultant has asked for my bloods to be tested for both. I…[Read more]

Dear Helen

I’m really gutted to hear your news. It just doesn’t seem fair. Mind you, who said life would be?!

I know it seems a strange question, but does there have to be a mad dash to have more treatment? Will you feel ill if you don’t, or be more prone to infection, or is it just the numbers will rise?

Did you have CDT first time…[Read more]

Hi Ali

I don’t know what happens to the Site these days. I have just renewed my password for about the sixth time. I had an email saying your Mum was going to have radiotherapy, but the post isn’t here! Maybe you started a new thread.

Anyway, what I was going to say is, compared to everything else radiotherapy is an easier part!! The worst…[Read more]