Welcome ALI
I am about write retrospective review on my experience of smouldering for 6 and half years which answer some of you queries
Mike

Hi Marian,
Welcome to the smoulderers/mgus forum which was set up relatively recently because there was a need to address the specific problems we encounter.
Your queries are not new so I will try to answer them .
Light chains ;
In your bone marrow you have an excess of abnormal plasma cells which produce abnormal immunoglobulins /paraprotein/M…[Read more]

Hi Ian,

Thanks for your kind message, I was very happy at yesterday’s clinic appointment to be told that that my paraprotein had dropped from 12.1 to 10.6 so my consultant was pleased with that. She said it may not drop much below 10 but it is more important that it stays down. I looked at the Mayo Clinics sMART classification and that was…[Read more]

Hi Vanessa

Persistent infections do seem to be part of the MM package. Although in remission I get frequent bouts of cellulitis. However, have you thought of talking to one of the MUK nurses to ask what they think about a second opinion?

Best wishes.

Mavis

Hi Tony

Welcome to the site you never wanted to join. As you read you will find that there is a great amount of research going on into a cure for MM. Treatment options have mushroomed since I was diagnosed nearly Five years ago so stay positive.

Apart from this Site the American site Myeloma Beacon is very good.

There is a Project called…[Read more]

Hi

Sorry to hear about your Dad’s pain. Has he seen the pain nurse? I find the palliative care nurse the most helpful person to help with my pain. She explained to me that we often need a mixture of pain killers. I am currently on paracetamol, Tramadol and ibruprofen. It just about keeps the pain manageable, but initially I was on oxycodine,…[Read more]

Hi Peter, Ian and Dawn

I am now 6 weeks post SCT and starting to feel alot better. If I go back to bed after breakfast and doing the essential household chores I read my book and then get up about 12 pm, go for a walk and then I am fine for the rest of the day. My youngest daughter is revising for her GCSE’s so it is lovely to have time home with…[Read more]

Dear Carol,
Thank you.I am aware about the neuropathy of thalidomide,I hope yours is resolving .
Mike

Hi

I have been a member of this forum for some time although I don’t post often I like to keep up to date with other members journey’s and overall I have shared the good the bad and the sad with you all. I have done the Myeloma X1 the chemo the SCT and all that jazz with the fallout of the before and after side effects I have noted people on…[Read more]

Hi all,
HB dropped to 11.1 before zometa infusion(flu like reaction 36hrs after)
Enrolled for myeloma x1but on CTD
Start 22/4
Mike

Hi Maureen

Sorry to hear that Ian’s SCT is delayed. Hopefully the hospital dentist can sort out the dental work quickly. It must be worrying for you but as I keep telling myself – one day at a time!

Hope all goes well

Andrea xx

Hi Dawn

Sorry you have had to start treatment but glad to hear you have got through the first cycle! I had CDT and it did take a while longer before the full effects kicked in with me and I had to give up work and driving etc. You will know you feel and adjust to give yourself the best chance of the treatment working. Good luck and hopefully you…[Read more]

Hi David,

My husband Phil is on the Pollux trial at Bart’s, he was randomised to the Daratumumab/Rev/Dex arm of the trial. Phil has just finished his second cycle. Things did not start well as he had a reaction to the first infusion of Daratumumab – a bronchospasm that resulted in difficulty breathing and also a rash. He had to stay the night…[Read more]

Dear Jane
My light chains are rising but below 100 and ratio below 50
Mike

Hi Karen,

So glad to hear you managed to pop over the France. Hopefully now you have a plan and know what is happening (or at least what the options are until your hear the result of the randomisation) you will feel a bit better, the limbo of not knowing what is coming next can be very daunting.

Phil has only ever had light chains mentioned a…[Read more]

Hi Jared

Welcome to the Site. Sorry to hear your SCT didn’t work for you. I think you would find Jetblack Living Blog really helpful as Jet has gone through a donner transplant and writes very helpfully about it. She is also in a similar age group to you. She doesn’t often post on here, but you can find her via your search engine. Although I…[Read more]

Dear Sean.
Smouldering myeloma has it s own thread
If you hb is less than 10 or has dropped by 2gm since november you have the criteria for active mm.In the uk you would most likely be offerd to go myeloma x1…[Read more]

Dear All,
A temporary repreive for two or three months unless hb drops to 11.1(last up to 11.7).The pet scan showed a pea size lesion in t12 ?significance ;repeat scan in may . But start zometa meanwhile .The 60% plasma cells are criteria for treatment but not for enroling for myeloma X1 which would give possible access (33% chance ) to…[Read more]

Hi Maureen

You have had a hard time. I do hope and pray all goes well with Ian’s SCT and brings the longed for long remission. Do let us know how things are going.

No, I haven’t heard anything from Jo. I have wondered what has happened to her. I used to value her sensitive posts.

I think folk disappear from here for two reasons: I. They are…[Read more]