Dear Min

Please don´t be silent. Not only would we miss your kind, common sense approach you might just miss us too! Having been widowed I do know what a help friends can be when your going through such a traumatic time so pleae do make the most of us.

I´m really glad that the funeral went well – what a comfort for you all.

Try to t…[Read more]

Hi
I had my SCT in Feb and the last three months I have been back on Revlimid. In addition to the usual symptoms you mentioned I have felt quite strange at times. I describe it to my husband as being like a goldfish looking out as everything seems rather vague and distant. I have also had some worrying short term memory losses and there are…[Read more]

Hi Bridget
Thanks so much for letting us know how you are getting on. I often think of you but don´t want to pester.
Sorry you are suffering with the pain and just praying that they get on top of everything for you soon.
Prayers and very best wishes are with you
love Carol xxx

Hi Ivan – what fantastic news. I don´t understand all the "ins and outs" but I do know that such a drop indicates that they have the cancer on the run!
Best wishes for continued good news.
Carol xxx

Hi Keith and Helen

Luckily I didn´t have any problems like yours but I just wanted to send you my very best wishes as I know how under the weather you both must be feeling at present.

Keep your chins up – had my sct in Feb and for a little while wondered if I would ever feel stronger but yesterday I rode my new horse and cleaned lots of mud…[Read more]

Hello Graham

Just wanted to extend a very warm welcome to you. Seems we were diagnosed in the same year but I only had my stem cell transplant in Feb of this year and after further velcade am now in remission.

Good luck with the Harvest and very best wishes – hoping that the GMX has produced lots of the little wrigglers for future…[Read more]

Hi Aileen
Just popped into the site, saw your post and wanted to say welcome but really sorry that you find yourself needing to join us.
I have found this site to be a huge support and there is always someone who has had experience that they are willing to share with you or perhaps talk over what options etc.
Sometimes, I have even found…[Read more]

Hello Alexis

Just wanted to say welcome (but obviously sorry that you need to be here).
I too am on Revlimid and am always interested to share experiences with others who are also using or have used Revlimid.
Best wishes
Carol

Hi Julie
Smashing to hear from you – but so sorry for the news about your poor husband. The expression never rains but pours springs to mind – you both sound to be taking things as much in your stride as you can though and I hope you can go forward with your plans soon.

We went over to Spain to check out the house last week. Also, my husband,…[Read more]

Can´t add any advice but I did just want to wish you all well. I know what your saying about they don´t want to investigate because of her other issues but how does your Mum feel? I know when I was very very ill I was beginning to feel I was a huge long burden to my poor husband. It´s only now that I am much much better and life is returning to…[Read more]

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]

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 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 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]