Thanks Tom and Wendy
I will do my best visiting all the high spots – tops of towers etc! Never been before, he did say it could be some months before I might need more treatment. Ironically the cough seems to finally be going.
Love Helen

Hi Helen
oh I wish you wouldn't copy me! It really is disappointing to find out that remission is coming to an end after what seems to be such a short time for both of us. It is not a good place to be in this watching and waiting period but it is still better than being on treatment so lets hope we both have a long period of time before we need…[Read more]

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

Hi Eve

I have just got back from Tromso in Norway so didn't see your post till now. I had a great time and saw the northern lights and went dog sledding. My light chains stayed more or less than same on my last light test so no need to start treatment yet, the consultant said I can go to India if they don't go over 600 so as they were only 69…[Read more]

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]

Hi Ozzy, hope you feel better soon, you are obviously having a bad reaction to the velcade, have they given you anti sickness medication and stuff for constipation, you have to take it every day regardless.

Wendy

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

HI KEITH,yes I realise the law of diminishing returns when it comes to a second stem cell transplant have told me medical consultant that I am not keen to have one until maybe further down the line holding it in reserve, so I have asked them to come up with something else instead. The good news is that my consultant says I should be fine to go to…[Read more]

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 Suan

I had weak and wobbly legs too but think it might have been caused by the dex not the thal or maybe both? Are you taking dex too? I already had my SCT in September 2011, I'm now starting to relapse. You need to see what your doctor says about having it or not.

Good luck with your treatment

Wendy

Hi Keith

That's a lot of platelets and transfusions, I do hope the medical team get on top of it and you can get a break from the relentless visits to hospital which is tiring in itself and that you get some sleep tonight. When will you get your next paraproteins results?

Take care

Wendy x

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