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 Karen – I was diagnosed with smouldering myeloma from a routine GP blood test in August 2012. It was a complete shock and the watch and wait was difficult, not being able to plan anything etc. I started treatment this April and am now on my 3rd cycle of CTD. I am glad to start treatment and feel very lucky that I was diagnosed early before…[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]

Hi David

Thats great  to hear ist finished but as I said when you started it ” No Rush to Use It” al keep checking and see

Take care David and stay well

Tom Onwards and upwards “Vasbyte” x

WoW Sarah

What a photo well done you its a great one I can tell you.

Good Luck to M now its on the go, its tiring in hospital as it is let alone the regime that M is going through  and am sure you all know I wish him luck and few side effects on his road to remission

Love Tom Onwards and upwards xx

Hi Angela,

Good luck to you and Alex for your run and thank you for helping to raise money for Myeloma UK. I hope the bone marrow biopsy on Tuesday brings good news.

Megan

Congratulations, definitely well deserved.

Megan

Sarah,

I hope you are both enjoying the long weekend and that the DTPACE helps get the Myeloma down to a level that will allow M to have the SCT.

Megan

Hello Helen,

Sorry to read about your relapse, I hope the next treatment has few side effects, works well and gives you a longer remission.

Megan

Hi Sara,

I can’t really help with most of your questions as my husband Phil was diagnosed with Myeloma not MGUS or SM. Phil has bone pain from the damage caused by Myeloma and this has not gone away completely after treatment so he has ongoing pain but one of the things the doctors are tracking to help decide when treatment is needed again is…[Read more]