Dear Wendy
I'm following you now! as of today my lambda light chains have jumped to 58, a gradual climb over several months to 26, then doubled!
No treatment changes so far, watch and wait – but it's still so disappointing. I'm off to Barcelona on Friday. Good luck for the 15th
Love Helen

Dear Emma
I'd speak to your mums GP and explain the situation, and speak to a McMillan advisor as soon as possible, as Tom says she can't be sent home unless they are confident she can manage. So lots of assessment to be requested, home visit by both physio and occupational therapist – this will take time – might give more confidence for both of…[Read more]

Dear Jean, Pat and Dai
How lovely for all of you, they all look so lovely, I don't have any grandchildren but they must give you so much pleasure.
Love Helen

Hi Jenny
Sorry to hear you've not been too well, I had cyclophos and Revlimid with dex as my induction treatment and it worked very effectively for me, I did feel very rough with it though, not so bad with just the Revlimid now, though it does make me quite tired. Are you heading for SCT?
Love Helen

Well!….no gas and air this far north! Southern softies!! Hmmm… We still have snow and now rain so hope it takes the snow away.
Vikki, I am wimpishly tired and was even more so for first 6 months after SCT. I've gone from superwoman to frail, and am just about resigned to it now. I know I've had infection after infection for the last year,…[Read more]

Hi Phil
Well done on your second anniversary, keep it up, bad luck with the bugs, I sympathise…… I'm still coughing, …… It's got to be just another bug too.
Love Helen

Hi Tom
So, do you have soft tissue lesions? Did you have an MRI scan or ct scan to exclude lymphomatous lesions at the beginning? The diagnosis is sometimes difficult at the edges of the condition but in those situations the decision has to be made and treatment started, usually based on clinical need for treatment. Also how the disease…[Read more]

Dear Keith
You are certainly going through the mill at the moment, I hope things settle down a bit for you, soon
Love Helen

Dear Tom
When I was diagnosed I was told that I had 'a myeloma' . Subsequently it has been described as oligo secretary light chain myeloma IgA Lambda, roughly at stage 2-3. This means that i produced little detectable paraprotein or light chains but bone marrow biopsy was 60% disease. I needed to know all this detail at the beginning while…[Read more]

Hi Ozzy
I had husky voice too, unlike Tom- some thought it was very attractive- I thought a change of career into vice was imminent but it all settled down when I stopped taking it, phew lucky escape there.!!;-)
Love Helen

Hello Jenny
There are many of us out here with light chain myeloma, I was diagnosed nearly 2 years ago and am now in full remission, I had RCD as induction chemo before SCT 17 months ago and am currently on maintenance therapy with Revlimid. I'm not sure how I can help as you seem a bit further along the road as far as treatment is concerned.…[Read more]

Dear Keith
Good start, let's hope you get a good run with it. Love Helen

Dear Wendy
This is a terrible blow for you, but don't cancel your holiday just yet, were you to be going with friends? I feel sure that your docs would let you go, unless you don't feel up to it of course.
Let us know how you get on on Friday,
Much love Helen

Hi Sharon
It is normal for all sorts of arthritic pain to disappear when you are on steroids, but I think you should mention the pain at the next appointment – if there is bone dammage, it is something they need to keep an eye on. And adequate pain control could be started.
Love Helen

Hi Lesley
On 3.2.11 I was told I had myeloma. It was the biggest surprise and shock ever. I was the fittest and most energetic of people, though a bit anaemic for no reason, blood transfusion service told me to go and get it checked out. I was reeling from the shock. I can't quite believe that I let them give me all this noxious stuff for such a…[Read more]

Hi Peter and Tom
Clearly this is now a competition! I was in for 3 days for the Melphalan and stem cells, then home for 2 days and back in for 10 a total of 13 days in hospital!
Hope you don't feel too bad Peter, just hang on in there.
Love Helen

Dear Lesley
I started the myeloma xi trial almost 2 years ago. Since then I have completed induction chemo, had stem cell transplant and now am on to my 15th cycle of Revlimid maintenance. I have been in complete remission since April 2011. I'm back at work full time, been on holiday to New Zealand and Italy, and am generally getting on with…[Read more]

Hi Tina
Yes I do have side effects, I have a poor sense of taste and smell so some foods really do nothing for me now as they taste so different and I have to eat lots of fruit and veg or get a very gripey gut and constipation. I get quite tired too, and I don't always realise how tired until too late and then the next day is difficult.
They…[Read more]

Dear Wendy
I'm in deep admiration of your fitness regime, I gave up playing tennis about 10 years ago after rupturing a calf muscle and realising that it could easily happen again so only do walking now! My daughter has caught the bug for the great north run and has done it twice now but says she sees it as putting something back not a love…[Read more]

Hi Tina
Welcome to the maintenance club! There are quite a few of us now. I've just started cycle 15 on the Revlimid and aspirin and still in complete remission. Hope all goes well for you.
Love Helen