Thanks Claudette
That is really helpful, I've found quotes from £800 down to 200 for the 2 of us (husband is mildly asthmatic and he costs nearly as much as me!!) lv seems to come in at a handy £83 for their 'premier' cover so I'm very grateful for your help, look after yourself
Love Helen

Hmmm yes very similar, I lost masses of weight too. I'm on 25mg revlimid, they say they might reduce it if necessary, wait and see.
Hope you have a good old rest and some fun in spain it is exciting doing normal things again, I'm planning my trip to New Zealand later this year and really looking forward to it. Now all I need is…[Read more]

Hi Carol
Sorry, had my sct in august and am recovering very slowly – when I commenced revlimid again at a hundred days post transplant I was still not very well and seem to be at a sort of plateau. I had revlimid as induction treatment and it brought my light chains down to 0 in 3 months and my hb went up from 8 to14 in the same time frame so…[Read more]

Hello Carol
Happy new year too
I'm just finished the second month of revlimid, (Amelie it is only given as a maintenance dose to people in the uk on the myeloma xi trial)
I'm still very tired and lack energy but ok so far on it – I think. If it slows disease progression I'll keep going with it as long as I can but it's a weird choice, as I…[Read more]

Dear Gill
I'm so very sad for you both. I think a chat with specialist nurse is a good idea, there may be something they can suggest. Stephen must also be feeling very down which might make the dex effect more profound if he has been told he's to be on it permanently. Also there is sometimes an irrational personal withdrawal from the people you…[Read more]

Hi Liz
I'm not bothered about thinking or talking about it, it was way worse than childbirth but does get less horrible as the time from it goes further away, if that makes sense. I saw it as an essential process to extend my life as much as possible, as, despite all the new stuff coming in for myeloma, we can only have what is the best available…[Read more]

Well:………. My experience was pretty awful, I had sailed through the chemo induction phase by comparison and worked until the stem cell collection. I was going to be mostly out patient treated for the transplant. Many people have a couple of bad weeks with it and some have little trouble at all, we are all different.
The high dose treatment…[Read more]

Dear Dai
Good luck with the trial, I do hope you randomise to the new med. I see you as an intrepid traveller and are setting off on a new pathway, a trailblazer, we watch and wait to see where it takes you…. It is a brave choice keep us posted.
Love Helen

Hi Kay
How did it all go for you today?
Helen

Hey Bridget
Happy new year. Hope this one is good for you. You seem to have done more than me today and I'm only on the revlimid! All I could do today was to pack the Christmas decorations in a box and cook the dinner! Still managed to fall asleep on the sofa again.
Love Helen

Hello Eve
Good news for you at last. What a struggle it has been. Time to take a breath now before the next phase. I found the sct much worse than I expected, I'm 18 weeks post now and not able to stay awake all day yet! Still got lots of gut problems -the unpredictability of which is very unnerving ( and painful!!) but I am in remission and that…[Read more]

Hello Liz
No I didn't have any plasmacytoma, I became progressively more anaemic as the mm cells took over my bone marrow and stopped the normal blood cell production. When I became too anaemic to give blood at the donor session I was sent for tests. That was October 10. I was diagnosed with mm in February 11, fortunately for me i have no obvious…[Read more]

Hi liz
Bone marrow transplant is a generic term these days and can mean any of several procedures. Many of us mm sufferers will have autologous stem cell infusions (our own cells previously withdrawn and saved) ( commonly called transplants) after high dose chemotherapy and some will have additional allogenic (donor cells) you need to get reading…[Read more]

Fingers crossed for today Eve
Love Helen

Hello Kay
I can't help here but hope all goes well on Friday
Love Helen

Dear Ed
I too am on the patient side of this select group. It is a hard road for you carers to travel with us but I can only reiterate what others have said, here is a place where you find support even if you only read about others experiences.

When I first found myself coming to terms with the disease I visualised myself in a small boat in a…[Read more]

Hello Heather
It's a funny place to meet people, I too am a nurse and am now 4 months post sct and thinking about the return to work, it's not an easy prospect I may say but I know I have to go back, I'm not really one of natures housewives and the ironing pile looks more intimidating than the boss. I know the emotional draw to work is strong…[Read more]

Hello Chris
Upbeat and flippant is good, sad, mad and angry bit is normal, I'm still moving between all of those things and have spent the last year on the roller coaster that is myeloma. I'm now 4 months post stem cell transplant and doing ok. Ask any question on here, you will get lots of support – even at those funny times of the day or night…[Read more]

Awww Tom thanks ever so much, hope you had a good day, I think we did, I cooked lunch for 14 then snuck away to sleep for hours this afternoon so now wide awake……..
Love Helen

Happy birthday Dai
Love helen