Hi Debs
Just to let you know I have been on Reblimid for three months and like you, am exhausted and the nerve problems in my feet and hands are annoying and uncomfortable – also have tummy upsets etc. etc.
Just returned from a couple of days in Spain during which time I had to stop the tablets as I just felt so absolutely rotten. It wasn´t…[Read more]

Hi Nadine
Welcome – although like everyone else I´m sorry that you have had to join us. Do you think your mum would be able to manage joining the site now that you are finding your way around? I suppose we mums always want to be strong for our children and I know that I am guilty of that – but here on this site I can be honest about how I am…[Read more]

Hi Sandra
Welcome (but sorry you had to join us – Best of luck with the transplant. I had mine done at St Jame´s Leeds and they allowed me to take in both pillows and duvet (my husband also brought in a kettle which we kept discreetly tucked away in a cupboard but they knew I had it and understood as my room was so cold and the drinks were…[Read more]

Hi,
Was nice to meet you as well. Yes our 1st meeting is a few weeks away! Getting excited & nervous.. Thank you for the support!
Chelle

Hi,
My husband is on Zometa and touch wood had had no problems. He has had about 3-4 infusions. I'm not sure if he can be switched but it is worth asking the consultant or even calling Ellen on the info line here as she might know or be able to point you in the right direction.
Best of luck,
Chelle

Hi,
My husband has been off since late March. He was told when his levels were steady for +4weeks he could go back (mainly his neutrophils). They went a whole 4 weeks but that's it. He's still home. As much as he is waiting to go back it is for the best and it had taken his SO long to come to terms with that. He would go to work if his eyes were…[Read more]

Dear Min
Thank you so much for sharing your loss with us – I look at my darling husband who cares for me and now understand better why he is at times fussy and overprotective (in my grumpy independent eyes anyway).
Having lost my first husband of 21 years to cancer I have been where you are. Two things – keep breathing and keep taking that…[Read more]

Hi all..
Thank you again for the lovely words. We saw Phil's Consultant today. He doesn't think the Revlimid is working like it should. Doesn't think it is a "Blip" since the levels have gone up that much. Going to stay on the Revlimid for now and been referred back to Dr Cook @ Birmingham to hopefully start on the Bendemustine Trial. He was too…[Read more]

Hi. Just wanted to Thank everyone for the lovely words of wisdom. We are back at the Consultant in the morning so fingers crossed. I do try and stay positive I just hate getting knocked back 2 steps after going ahead 1.. Guess that's the name of the game though… Thank you again.. Will let you all know what happens at the Consultant. xx

Hi Chelle
Only just read of your rotten news and I am so sorry that it´s taking a while to find the right treatment for your husband and obviously taking it out of your both in different ways. We all understand that it´s very hard to remain positive – at times all we can do is keep going whilst we let the doctors try and figure things out on o…[Read more]

Hi,

I don't know if you ever "know" how to act. My husband is 37 and was diagnosed at 30. It was caught by accident and was fairly good the past few years. This year has been SO different! He has been quite ill and we've actually started talking about death. I try and do the good and the bad. I'll tell him how things will get better and they…[Read more]

Hi Paul.
Welcome. I'm sure it was tough to hear your news. But the others are right this is a great place to get advice, support, friendship and vent. My husband is 37 and was diagnosed at 30. I have just started a Support Group in Burton because of how wonderful Myeloma UK has been. I wanted to give back some help. It does get easier after some…[Read more]

Hi Bridget
So sorry your having so much pain – hate to think of you putting up with it if there is something the Hospice could offer above what you already have might it be worth a short stay? Would it mean going in for very long to see if they could help? I know how you feel – I wouldn´t want to be away from home either but perhaps if it´s 4…[Read more]

Hope your feeling better soon Dai. Fingers crossed that your feeling better soon and you get to enjoy your holiday.
Carol x

I simply don´t understand why adults who are fighting a life threatening condition are now allowed a record of their treatment progress.
Whilst I was undergoing my conditioning chemo prior to sct I asked my specialist for a photocopy of my prescription which included my monthly blood results including neutrophils etc. etc. I was on such a…[Read more]

Hello Everyone

Just a lne to thank you all for your lovely messages following my good news – a zero paraprotien level. You have all been so encouraging and just wanted to say that the last year has been made so much easier having such a support network to turn to. Nice to know that we are all welcome whatever our news is – good or bad.
I…[Read more]

Hi all – a little bit of GLOOD NEWS!

Re: Myeloma 11 trial

We saw the specialist yesterday who was really pleased (pp still at 0) and has reduced the revlimid from 25mg to 10mg so I am hoping that some of the side effects reduce. I have lost quite a bit of weight so I am hoping that will stop now and my appetite improve. I don´t have…[Read more]

Hi Dai
We have something on those lines and maybe everyone does. Anyway, we got a folder when we first started treatment which logs all visits and treatments – it also provides a brief intro to chemo,basic glossary etc. To be honest I haven´t really used mine as it was just yet another thing to cart around (and lose on bad days) but I can see…[Read more]