Its really nice to meet you all just wish it wasn't cause of MM! I will ring on Monday for a MM diary. I am just cross that we haven't been informed in 2009 that there was Bence Jones protein in his urine, at least we would ve expected all the last 2 week's drama with his kidneys. He was so poorly he didn't know what was happening to him, he…[Read more]

Hi Deirdre

Sorry thatmyou are now part of our club, but welcome from me. My hubby was diagnosed 6 years ago with smouldering MM no treatment only Zometa which he had for a year. June this year he started CDT and has just finished and is waiting for date for SCT and he has started Zometa again. Deirdre if you phone MMUK (no at top) and ask they…[Read more]

Hi Dai and David
I think I upped the stress limit with this trip to NZ,getting everything ready doing all the organisation,plus producing Christmas presents for the people we leave behind,specially the grand children.Have not seen one of my Kiwi grand children for 3 years,so this trip is a must.I also feel it has to be now rather than later,I do…[Read more]

Hi Eve,
Thank you for replying :-). According to the consultant at the hospital in Swansea, Cyril has had Bence Jones protein in his urine since 2009 (we were only told last Dec 2011) about it, Somewhere we've haven't been told he had MM in 2009 and he has been left for 2 years without monitoring or treatment :-S He only had Zometa every month…[Read more]

Hi Jet

Nice to hear from you,must have been heavy going with back to back SCT,they do say it is the best thing to a cure.Have not heard about vaccination for shingles,but do know if you catch it early,have less side effects.
I believe you have to have all your childhood injections again with donor transplant:-S Helen got whooping cough,seems…[Read more]

Hi Chris and Lena
Well I hope you are waiting for your drugs now and ready packed. Dont forget to get some Anti Sick Tabs as I needed them for a month or two after SCT :-/
Take care when you get home now is when the healing starts stay away from infections and you might (i did) need some sleapy pills also.

Vickie and Colin
It wont be long…[Read more]

Hi Stuart and Vanessa

A Warm welcome to the site.

I am Tom had CDT and SCT in Decenber 09 am now in remission and Drug free am pleased to say.
Good Luck on your road to remission as its a hard one some days but stick with it and stay strong you will soon be my side of it and it feels great 😎

Ask away and this is the place to vent out…[Read more]

Hi Vicki and Colin

Well Honest it is going the correct way and to be fair its one not to rush.

I didn't have Injections post SCT but I do remember them prior to SCT and yep it was Bloody awful, the pain was in my ribs,back and arms and my pain lasted about two and a half days, I was told it was theCells getting pushed out into the blood…[Read more]

Hi Kes and welcome from me to. This is the best place for you to be. We are all a friendly lot and there is a mindful of I formation, advice and friendship here. It is hard coming to terms with Mm. My hubby was diagnosed 6 years ago with smouldering MM and started CDT in June and has just finished his last cycle and waiting for date for SCT.…[Read more]

Hi Deirdre
Welcome to the site,yes the whole thing does seem so unreal,it is all a bit mind blowing,how are you managing in yourself are you getting enough rest??

It must be hard work,going to the hospital 3 times a week,why are they talking of ( crancking up the chemo??? )

How long has he been on treatment and what chemo treatment is he on.??Eve

Hi Babs

You certainly have had a terrible time. But as you have read a out Slims journey you will,know that there is light at the end of the tunnel. Slim had a hard struggle but look at him and Eve now gallivanting all over the place – and New Zealand no less!!! So as Eve says book you Australia trip (when you get consultants permission) then…[Read more]

Chris great news you are going home and that you are feeling good. I'm sure Lena is over the moon as well. Take it easy and take care

Love Jean

Hi Kerry

Sorry Melvion is having such a hard time of it, and you too, as you give him such wonderful support.

Is there the possibility of another Surgeon, elsewhere, doing the operation on Melvin's spine? We have some marvellous ones at LGI (Leeds) They did the operation to remove the tumour on my spine (T10 I think) and built some racking…[Read more]

Hi Babs

Welcome to the Site, but sorry you have had to join it! You are well on with the journey, and should be able to get planning now for some enjoyable happenings. None of us would chose life with MM, but we are all committed to making the best of our lives as we can, and we can spur one another on.

Lots of love.

Mavis x

Hi Kes

Welcome from me too, and as others have said, we are all here to support you all we can.

Goodness, as you have got through to round five of CDT you are doing well. Those last weeks go very quiclky. I remeber counting the days off: nineteen, eighteen etc!!! Just be warned you could have a bit of a dip as the chemicals work their way…[Read more]

Hi Babs

Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line…[Read more]

Hi Babs

IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S

My husband had his SCT in May so a little ahead of you,and we are off to NZ…[Read more]

HI Keith

Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer…[Read more]

Hi Babs

Sory you had to join us but welcome. It is such a shame that you have only just found the site as this is a great place for support,advice and friendship. I hate the word carer, but I am carer to my hubby Frank. We are just waiting for a date for his SCT. How was yours are you in remission? Although I have been a member of the forum…[Read more]