Hi Mandy.
Just wanted to say I’m sorry your suffering so much.
There’s not much I can say in the way of experience as I’ve never had a SCT and never will. It’s a long story but a shortened version is I’ve not responded to the drugs.
The only thing I can think of is its something to do with the production of stem cells as I’ve read that causes…[Read more]

Hi Jeff
I was on pain killers for my back, very strong ones at times, but I stopped taking the stronger ones because I didn’t like the way they made me feel. So I stuck to paracetamol and oramorph. Post op I still get pain though it’s not as sharp as before where they operated. The trouble is my back has damage from top to bottom so if I’m not…[Read more]

Hi
I’m very sorry to hear about your dad’s problems.
Like Tom and David I was warned of the danger of dental extraction whilst on Zometa. I was told before any extractions I had to stop Zometa for 3 months and also not start again till 3 month post extraction. I was also given a leaflet to take to my dentist though she knew about it already. Your…[Read more]

Hi Carol.
My paraproteins started at 49 in Oct 2011 tried all the usual treatments and my PPs wouldn’t go below 35 I’ve now been on CRD for 22 cycles now and the lowest reading I’ve had was 12 for one cycle only I’ve been around 20 for most of the time. No chance of auto or allo transplant for me my last reading was 31 so movement to my next…[Read more]

Hi David
That’s great news David.
From what I thought I knew about Revlamid I thought it was a slow burner and it takes it’s time setting about its work. I’m sure it took 3 or 4 cycles and the introduction of cyclophosphamide before it worked for me. So hopefully your readings will go even lower.
Good luck

Every day is a gift
Open it carefully

Andy

Hi Jeff.
I can’t tell you wether partial remission is as good as it’ll get for you. I think 6 cycles is the norm for CDT and I think they’ll be trying Velcade to push your paraproteins down a bit further before going onto SCT. Velcade works well and quickly in most people and I’m sure it’ll get you to SCT if that’s the route you want.
I had…[Read more]

Hi Maureen.
I’m glad to hear Ian is out of hospital at last. I hope his wound heals quickly and you can both start enjoying a “normal” life the best you can.

Every day is a gift.
Unwrap it gratefully

Andy xx

TEST

Hi Mothas

Unfortunately I do not had a good view of the Mersey. But the rooms with the view are half the size of mine so I decided I would much sooner have the space.. 🙁 SHAME

MANDY X

Good Evening everyone

Well I will have been in for a week tomorrow and to be honest I don't know where the time has gone.. I had my SCT on Thursday and so far – so good!! Couldn't feel better if I tried. Its a real weird feeling laying/sitting here waiting to feel poorly.. when you just feel good.
Sorry I have not much to tell but it really…[Read more]

Thanks Tom.. I have been using the mouthwash also like its going out of fashion because mouth ulcers is something I have always suffered from and that scares me hence I also use the mouthwash and the Nystatin. Right nurse has give me a sleeping tablet as I haven't had much sleep the past 2 nights.. good night everyone
Mandy x

I am eating a lot but mostly all of the wrong things – I have developed a terrible sweet tooth – got to stop it I dont want to gain the weight… I will keep you posted about the x-ray – fingers crossed I am right and the doctor is wrong. hehehe, Mandy x

Thanks Tony.. thats very reassuring – about the weather at least.. haha. I love the outdoors and have such a happy social and family life I am not going to let anything take that away from me and I am going to be a Nanny in October so thats something worth fighting for 🙂 Its also my 50th birthday in October so that 2 good things to get better…[Read more]

Hi Gill

I was diagnosed last October, I am in hospital now having had my SCT today. I was on the clinical trials prior to this and I must confess the side effects I suffered were really rough. My feelings are what choices do I have so after talking to myself, reading other peoples journeys I decided I didn't really have any other choice. I…[Read more]

Hi Megan and Tom and anyone else that is following me x

Thanks for asking – yes I had my second stem cells put in today and everything was fine, they bought a portable x-ray machine to my room to x-ray my abdomen to check if I have a blood clot as my ankles and legs are still very swollen – I don't think of myself as a medical person whatsoever…[Read more]

Hi Eve

Yes I have had my hair cut into a short bob I wasn't brave enough to go any shorter just in case a miracle happens and I don't lose it – ha wishful thinking. I am already stuck in my room not allowed out for at least 2 weeks.
Yes it's still the old hospital but the new one Is in the process of being built as we speak and it will be…[Read more]

Hi everyone, well I am on day 4 of my 28 day stay in the royal hospital In Liverpool – so far so good. I have had the intensive chemo on Tuesday and yesterday I had some of my stem cells put back in. I will be having the remaining put in today. I am still very swollen – face, ankles & feet. The doctor is prescribing me with an injection today…[Read more]

Hi Dai and Chris
Dai is right I've been through most the standard and some not so standard treatments to no avail. My PP's stubbornly remained in the mid 30's. The criteria I was given at the start of treatment, when my PP's were 50, to get to SCT was at least a 50% reduction in PP levels. So that would of put me in the lower 20's bracket. Anyway…[Read more]