Hello again Gaye, you keep smiling lady, i hope that you are getting looked after well and i hope the sun shines everyday on that lovely hospice garden just for you xxxx

Hi
thanks for your reply how badly were your kidneys damaged did it take you a long time to recover from the SCT what sort of state are your kidneys in now I would be very interested to know if they are more damaged now after the transplant

Kind Regards Jo

Helen,
PS. So glad to hear your going into sct at 0 – fantastic starting point for you I feel quite excited that you must surely have a super long running remission.
Fingers and toes crossed.
Carol xxx

Thanks Helen – at least I´m forwarned then not te expect too much at first.
Take care
Carol xx

Hi Helen

In that case we are doing things in a slightly different order as I have had my sct (which by the way has left me now with 0 yes zero paraprotien level!) and am now just finishing my 3rd cycle of Revlimid.

They seem to be so well practiced in this procedure now that I am sure everything will go smoothly and know are in good hands so…[Read more]

HiHelen good luck with your sct tomorrow . It is definitely worth doing and hopefully you will get a long period of remission and no heavy treatment ( thats the best part!!) I am sure you are well organised but just a thought take your own cup or mug with you When you are feeling a bit queasy tea in a plastic cup just makes it worse !! I hope you…[Read more]

Hi Helen
Thanks for the update about stiff joints and sickness etc. Sounds like you at a similar point of treatment to me – I have just finished my third month of Revlimid.
Glad to hear that things might be settling down over the next few months and I might be able to get a bit more active.
Have a good weekend
Love Carol xx

YOUR ON
JO;-)

Terrific wish i could have been there to see you
Keep it up
Love Jo xxx:-P

hi Min

glad Peter got his back fixed lets hope it helps to keep him free of pain
I will be thinking of you both on monday hope all goes well so you both can get on with life again GOOD LUCK Peter:-)

Regards Jo

Hello Ted

Wecome to the site you have done so well not to have had treatment for five years long may it last I think chest infections are part of the baggage that comes with MM lets hope you have a better autumn:-)

Love JO

Hi Gaye
I came on this site the end of February just as you went off,I saw your posting on trying new drugs ,about getting approval ,and your problems with pain control,I went back over your old posting to try to learn from your experience and I did,thank you for helping new people on this site.I like many others wondered what had happened to…[Read more]

Hi Ted welcome to the crazy gang!!Seriously you couldnt find a better place for support, advice or just a place to vent your worst fears There are lots of lovely people who are at various stages of the myeloma journey Its brilliant to hear you havent needed any treatment yet whilst we all get anxious on clinic days just try and enjoy these…[Read more]

Dear Gaye you have been in my thoughts a lot lately and it is lovely to hear from you Not so lovely to hear you have had a rough time though. I can understand your decision to stop treatment completely Initially we are all for fighting the fight but these treatments that give us extra time take their toll, mentally and physically. I realised a…[Read more]

Thank you Carol, believe it or not they are 6 of us brothers and sisters. Me and my sister are the main carers, take mum to appointments, do shopping, check mum is ok and on the right medication,ring round everywhere and tell people off when need be. We go for our day with mum to her house on saturday and have a good natter some dinner and a brew.…[Read more]

hello Ted and welcome to the site. My mum is the myeloma sufferer in our family.All i can say is that you will get lots of advice and support of the lovely people on this site i feel that i can come on here and when i need to ask anything there is always someone there with an answer or a kind word. I am sorry that you have myeloma but here is to…[Read more]

Hi Min
Glad to see you have posted at last was worrying,as all your posting was about other people and not how Peter and you were.:-)I hope it all works out for you on Monday,and Peter starts to feel better,now his back has been fixed

We need some good news on this site,so keeping fingers crossed that Peter is the turning point!!!,will be…[Read more]

Hi Craig
The Problem is Craig,you need someone who has been through the whole system of varies drugs,with all the problems that go with it,these people do not plan that far a head.As you may understand they do not know what will be happening by November so no one can offer you a guarantee!!!!.Even carers like Min who are very well informed,have…[Read more]

Hi Gina
Glad to hear things are a little more positive. You sound such a lovely caring daughter – your mum must feel so lucky to have you but please do look after yourself too won´t you? My carer is my husband who spent the first 9 months up to transplant worrying himself sick and hardly every having a break from thinking how he could make…[Read more]

Hi and welcome!
So pleased you are having a good long run. I managed for just over five years and to be honest if it had not been for my job becoming incredibly pressurised and our elderly mum becoming very difficult and demanding I suspect I would have continued well for quite some time. I should have put my foot down and looked after myself a…[Read more]