Hi Terry,
Great to hear your shoulder pain was just normal 'life's twinges'and you are still in the watch and wait group. I want to stay in the watch and wait group for as long as possible too if I can. I don't know why it is taking so long to see the specialist, even my general heomo doctor is surprised he said it usually takes 2-3 weeks, so he…[Read more]

Hi Terry,
Can't believe St Patrick's Day is eons away now I think I have been living in the twilight zone since then such a lot of really confusing stuff has happened to me. However,I'm sure you have had all of this yourself over the past months. As you know I took your suggestion and organised a second opinion from a specialist in myeloma and…[Read more]

Hi Terry,
Saw my general/heom doctor yesterday and he has agreed to arrange for me to have a second opinion with a myeloma expert at another hospital so I am very pleased to be having someone else take a look at my results.I was thinking about the 'watch and wait' monitoring system you are on in the US and was wondering if you have been given any…[Read more]

Hi Terry,
Good idea about writing it all down because although I feel pretty lucid at the moment I can see how I might get flustered in the meeting, especially if he starts to bulldoze me into accepting everything he says at face value. I've decided if I am not happy with the meeting I will either ask for a second opinion from a specialist in…[Read more]

Hi Terry,
Thanks for your help. Yes, I have requested another appointment with my hematologist at the hospital. When I first heard the news I couldn't think of any questions to ask him because I was too much in shock. However, now I have had almost 2 weeks to seek more info about this illness, from good people such as yourself, I now feel in a…[Read more]

Hi Terry,

Thanks for your leads. I was due to start chemo today but rang and cancelled ! Last week I spent the whole time in a 'daze' feeling like I had just been hit by a bag of hammers but now I am starting to realise it is 'my body' so it should also be my choice. It is so easy to just be so scared that you can just do whatever the doctor…[Read more]

Hi Mavis

Thanks for your post. I was due at the hospital today at 1pm to start chemo but rang and told them I needed more time to think over my options. Yes, in time, I may well have to go through the treatment they are offering but I think they are rushing it a bit in my case. If I wasn't been monitored it would have taken me at least 6…[Read more]

Hi Terry,

Thanks for the info – I have never heard of the CRAB criteria but I have been told that the only presenting symptoms are my hemoglobin level which is 10.9 and my protein level is 39. My creatinine level is 52, calcium serum is 2.23.I have had no infections at all or bone lesions.
On Monday I am going to see a homeopathy doctor to…[Read more]

Fadia,
Oh, just read everyone's posts and I should have said a Big Hello to you all. I'm Fadia and I am due to start what sounds like awful treatment next week (might just run off to the hills instead, don't know yet )has everyone had the CTD treatment of cyclophosphamide, thalidomide and dexamethasone ?

Fadia

Hi Terry,
Just read your post and I was very interested to hear that you have only mild anemia so treatment has not been triggered yet. I was diagnosed accidentally too, I was found to have MGUS in 2007 and was checked every 6 months until last week when I was told I had become mildly aneamic so they would start me on Chemo next week. I am still…[Read more]