Hi, I believe it is extremely important to stay well hydrated for a variety of reasons, including protecting the kidneys, and 3 litres a day should be the aim especially whilst on a 3 drug combo. I am still doing this even tho currently drug free so it must become an integral part of your life. I found this to be very difficult but it does get…[Read more]

Hi Peter, Your consultant seems somewhat blunt without giving you any supporting information for his views. I got MM at 50 with severe kidney damage and they have recovered to a stable 30% gfr – I live life as normal on this. -went for SCt because of my age and it is considered to deepen the length of remission. The consultant told me there was a…[Read more]

My Dear Vicki

I was so sorry to see your very sad news. Colin is at peace now. My thoughts and prayers are with you during this very sad time.

susie

So sorry to hear this news and I hope you take comfort in the knowledge that he died enveloped in your love and that you gave him such tremendous support. I hope in time you embrace that “life is for the living” and have a very happy, fulfilling life – a different life and not what you had thought it would be – but a happy one all the same.

Rebecca

Hi Peter and welcome. You will find some very helpful, knowledgeable folk on here. I know when I was at the start of the MM life I found it so helpful and comforting to speak to people going through the same hardship.
I wasn’t having Velcade but was on the Myeloma X1 trial and on Revlimid, Dex,and Cyclophosphamide. I always found the dex made me…[Read more]

Hi, it is interesting reading this thread again with an extra year on and my hindsight of it all is that we are very ordinary people faced with a gargantuan extraordinary challenge and we start it with the normal mindset for a battle – you lose or you win and are victorious. We all set off totally focussed on positivity and focus on sct/remission…[Read more]

Hi Andy

Well done. So pleased for you. Hope it keeps going like that for a very long time. You deserve it.

Best wishes

susie

Hello. I’m sorry you have had to join this forum, but welcome. You will find lots of knowledgeable folks on here.

Wasn’t on thalidomide myself, I am on the myeloma x1 trial and was randomised to Revlimid, so I can’t speak from experience. However everyone reacts in different ways, just as myeloma is a very individual disease.

I suggest you…[Read more]

Hi Maureen

I’ll remember that about the blood results etc. My consultant always answers any questions I have but he never seems to offer any info. But he is a very pleasant chap and there is only 2 consultants at my hospital. However its something to bear in mind. Thanks

Best wishes

susie

Hi Tony

Thanks for your reply.

I shall continue to try and get these letters as they prove a good record to have. As I said, I used to always get them with the MGUS, and that was without asking. Its just weird.

Best Wishes

susie

Hi Mervin, good luck with it all – its not pleasant but doable – I was the ones who stayed in bed all the time in pyjamas moving only to shower – I was not whacked out or tired its just that any movement made me sick. I hated it when they made me get out of bed for them to make it as I would spend the whole time being sick. Everyone is different…[Read more]

Thanks Helen – I don’t like “preaching” exercise as am aware many have bone complications – I have kidney complications at around 30% but it doesn’t affect how I exercise/live my life – it is just a number and exercise helps. Unfortunately you will always have the sword of damaclese hanging over you and the key is to live well with this – much…[Read more]

Hi, I was diagnosed just before my 51st birthday and did the chemo/SCt and now in remission and drug free. My personal opinion only – what got me through it all was being adamant it would not impact on my life anymore than it had to so I continued with the gym/sporting activities throughout all treatment and as soon after SCT as possible. Having…[Read more]

Dear Vicky

I just wanted to add to the many posts following your sad news. I wish you both all the very best. Remember doctors can be wrong so try and keep hope in your hearts.

My thoughts and prays are with you

susie

Hi Reescj1

I found your post rather interesting. Do you know if unrefined sugar is ok to have ? I only ever have the golden unrefined sugar.

susie

To Sct you need to be stable and as close to the normal range as poss.IF this is not achieved with the initial chemo then another type may be added to achieve as low as poss numbers – perhaps 100 or less.THere is the option of home dialysis and have read of someone on this forum who does that and has adapted his life well to it. REmission is…[Read more]

Hi Sandra, this cancer is a huge shock to everyone and it is a natural reaction for your husband to not want to know everything initially – I left hospital with no literature and said I would ask when I was ready. I made a pact with my husband not to look at the internet (he did, however, but never told me of his research and when I was ready I…[Read more]

Hi Sandra, Sorry you are here, MM is very difficult to understand and the important thing to remember is that it is a very individual cancer so when you read through literature etc always bear that in mind. If you go to the information section on this site there are lots of guides to help you understand this complicated disease. I was admitted…[Read more]

Yes you are so right, I do feel tho it is a shame that we are not automatically helped with the armour to deal mentally with a cancer diagnosis. I have read a lot and thought I practiced “mindfulness” very well – “choosing” to react to things positively and choosing to do things that make me happy rather than get bogged down with things like work…[Read more]