Hi Chris
I had complications which are resolving at their rate not mine! I do keep wondering if I've just turned soft but they assure me 'no, just everyone reacts differently' On Friday it will be 1 year since diagnosis day, and it has been very full on since the start. I have apparently been ' very sensitive' to all the drugs and only time will…[Read more]

Hi Peggy
There are some pharmaceutical cool bags available which keep drugs at the optimum temperature during travel etc, I had one at work a few years ago. It would not be impossible to find out from your specialist nurse and the pharmacy department you attend. They are VERY expensive. You might need to approach a local charity to see if they…[Read more]

Hi Sarah
All in one go is good, it took me 2 days but only for an hour on the second day, and the feeling of 'kicked by a horse' lasted for about 3 weeks afterwards, so enjoy the time now before the sct.
My daughter did the great north run last year for blood cancer research and raised a couple of thousand, people do post the links, we didn't as…[Read more]

Dear Chris
I'm a few months post transplant now and looking to go back to work in the next few months. I worked up to stem cell collection point (I'm a nurse) since transplant in august I've been slowly recovering, we are all very different in our recovery speeds. I think the reason no one talks much about finance on here is that it is such a…[Read more]

Hi Wendy that's also a good quote I was only looking at single trips but I suppose an annual policy might be a good idea, I might want to go elsewhere as well8-) I am told that Revlimid is only a therapy not chemotherapy so there is not supposed to be a problem and there is less risk of DVT with it than thalidomide. Enjoy the skiing, I've never…[Read more]

Hi Dai
Bit of a blow for you, I'm sorry, I was just reading the bumf about this study on the mmuk site and it sounds very encouraging, I'll keep my fingers crossed for you.
Helen

Oh no David -now I don't know what to do! I did fill in all ailments, I'm happy to say I never had anything wrong at all before mm and husband only mild asthma ( allergic to cats- and we have one:-/ ) so all my quotes included full disclosure and I assume this is taken into consideration hence the great variation in quotes? Or have I got this…[Read more]

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]