Hello Eve
I totally agree with the the statement it a really good way to think
Love Jox

Hi Eve and Slim
sorry slim is not feeling so well I hope it is just a blip after coming off meds I felt a lot of withdrawal symptoms when I came off CDT I think the drugs have to work there way out of the system I havn't slept as well since not having Thalidomide. I am still lucky enough to be in Plateau I don't know how long for so fingers…[Read more]

Hi Mandy

Welcome to the site,it must be worrying for you being so far away.One of my own daughters is in NZ,so have some knowledge of how helpless she felt although my husband,has me and our other 2 daughters.

I do not think anyone going through Chemo treatment has a good quality of life and many of the side effects,can bring you down to a…[Read more]

Hi Chris

Thank you so much for posting,it does give us some in sight,knowing we have to make this big decision ,it is early days for us concerning SCT,just trying to get any information concerning SCT,its almost like having to take a couple of steps backward to advance, with not knowing if it will be worth the effort
(if that makes…[Read more]

Hello Phil
congratulations on a good remission I really hope it lasts for years for you
Regards Jo

Dai

You are not going to like me for saying this,but in the big picture of things,it does not matter what you would like,because at the end of the day ,Janet will continue to live,how she chooses to do it, it will be a measure of her self being!!!!!,Sorry DAi.
Find your fighting spirit , if you cannot get on trials,ask to have the drug any…[Read more]

Dai I wish I could give you some sound advice,but the only thing I can think of,is if you reduce your water intake it must have an effect on your kidneys.

It is so wrong that you have to comply to a criteria ,were does that leave people like Slim,nothing shows in bloods or urine,I just know when things are not right,luckly I now have a GP who…[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

DIA
You are a one off yes very different a medical conumdrum indeed:-/ I really hope you can hold out for the next three weeks I am the other way round if things change it shows up in my urine almost straight away . I saw my consultant the other day and apparently I am still in plateau so fingers crossed I will soon be clear for three years I…[Read more]

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

Hi Only Me
good to hear the good news about your mum,it is amazing the way things turn round from someone being so ill,and then responding to treatment,its just finding the right treatment.:-)

I think it,s very important to be positive,and to try to lead a normal life as possible,every one has there down days,and as you say there is only one…[Read more]

Hi Val

My hubby suffers with his legs,not so much cramp or even PN, just very painful,they feel very hard around the calves,I massage his legs as much as possible to take some of the tension from the calves,plus walking seems to help,it seem his leg problem is more effected with the cold.
I will not tell you what Slim suggested,but it had to…[Read more]

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]

Hi Michele

I can relate to your problem,as we are in the same position,at last we have remission,and waiting on Kings to see if my husband is suitable for SCT,his consultant says although very fit has had pneumonia which has damaged his lungs,so feels it might not be in his interest,but has told us to go to kings,they are the experts,so we…[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]