Hi Etta
Welcome
I react to the zometa with lethargy, tiredness and muscle ache, I try to remember to take paracetamol an hour before the injection and then regularly for a day or 2 afterwards. I have been on it since feb 2011 and when have forgotten to take it it has been worse. If you can't take paracetamol maybe the team at the hosp can…[Read more]

Hi Wendy
No idea either but how are you feeling now? hope you are less tired and down.
I had the ' you are in complete remission' blood tests back this week so, despite still feeling pretty sick it was a big boost.
Helen

Hi Dai
Yes I agree with you but have never really thought through the whole process until now, when i have reached the goal of sct and now enter the watch and wait section.
When you first get the diagnosis, the shock and the treatment options are presented to you in such a hurry and you have no real idea how to make choices, we are as you say…[Read more]

Hi Bridget
Have sent you email with address for hat
Love Helen

The site won't let me finish my previous post?
So I will continue here.
Is the disease still as much of a mystery to medics as it appears in the literature?
I do hope you get some answers at the conference Dai and I look forward to hearing how you get on with it.
Helen

Hi Dai
I hadn't read this before I answered Nadines post but you raise a point that I too deliberated on for a very long time before the sct. I was fitter the day before my sct than I have been for about 5 years, I was able to do a 5 mile walk without pain or tiredness.
I have searched the literature too and read report after report on the…[Read more]

Hi Nadine
I had my sct nearly 6 weeks ago, it was horrid but I'm getting better every day. It is as Debs describes, like childbirth and you begin to forget about it as you improve. I'm doing the shopping and cooking now and watching the dust doesn't get too deep!
About you, I have 21 and 25 year old children(!) and I don't want them to be part…[Read more]

Hi Paul
Ah the missing soap.. There you go it's the little things that get you! I worked at jimmy's back in the 80's I have fond memories of the place, I live close to the Newcastle centre so was only going to be in hosp for a few days and come and go as a day case how ever became very ill at day 6 and was admitted for the next 10 days then been…[Read more]

Hi Paul
Belated welcome, I've been a bit out of commission lately.
I was diagnosed with IgA lambda light chain myeloma in feb, was on RCD arm of myeloma xi trial and just had sct 5 weeks ago, doing ok now.
My light chains dropped from 800 to 11 (normal) in the 4 cycles I had. So -good response and on to sct.
One thing I'd warn about and that…[Read more]

Hi Dai
I asked about central lines early on, (you are going to think I'm a vacuous vain creature who ought to know better from all my posts about appearance and hair etc, but I was concerned about the position of these lines and neckline scarring afterwards, I want to return to as normal a life as possible and look as though nothing is wrong with…[Read more]

Bridget and Gill yes none of the men need to read this
This hair thing is odd, before my diagnosis in feb I thought my aches and pains and tiredness were due to a very busy job and life and the dreaded menopause ( I was 56) . My eyebrows had started to grow longer and more wild and need firm trimming, leg hair more luxuriant, head hair finer and…[Read more]

I have the same, what feels like lumps along the line of the vein they used, I was told they take a long time to get better. I'm 2 weeks behind you at 5 weeks post sct.
Helen

Aww Bridget thanks very much, I know what you mean about being too untidy for a wig, I think that is my problem too, I'm normally very lazy with my hair and in fact when my boss asked me when I'd be back at work I had to reply, 'only when I've got my hair back' then had to explain that I'd be the person who was waving her arms around and suddenly…[Read more]

Debs That is an impressive amount of fundraising, well done. I'm going to have to keep the wig on then! It was a bit un nerving yesterday when I went out in the wind and I was trying not to hold on to it and terrified it would blow away.
Bit soul destroying for you if sister thought you'd shaved head again.
I'm much better this week thought it…[Read more]

Funny how it's so different for everyone my mouth was ok, very dry and my lips constantly peeling but no ulcers but the gut problems are still bothersome though gradually settling
H

Min I love that you share this with us, and that Peter clearly loved you so much, I love that you spent a little time with me when I felt so low,
And I hate that this illness makes us be so horrible to the people we love most, I'd have done anything to have spared my family from taking this journey with me
And I love that my beautiful daughter…[Read more]

Hi I was on revlimid for 4 cycles and the tiredness was terrific. I kept working and sometimes could not come home as I felt to exhausted to drive, ended up having to get lifts from people. Light headedness and trembling muscles so I couldn't do anything til I'd had a sleep happened on some days but I couldn't predict which would be my worst days,…[Read more]

Debs are you wearing anything on your head? My problem is that I haven't told a lot of people what is happening to me so I feel obliged to maintain the pretence, my daughter chose my wig so she likes it and my 2 are much older than yours and don't seem bothered either way. Did you have your sct at the end of July? We will have a hair growing…[Read more]

Hi Elizabeth thanks for this I have no sign of new hair yet, have left the old sparse hair and was thinking I'd wait until some new hair starts to grow then get the hairdresser to sort it out. in the meantime I have wig which I think looks wrong but the family think it's a good match looks too neat to me but hey ho got to put up with it
Helen

Hi Ivan
As I understand it, paraproteins are released by the myeloma cancer cells and are what are known as 'marker' cells, they only occur when there is something going wrong and are specific to this type of condition. So 0 is the best number to have. The level for treatment seems to depend on the overall condition of each individual, this is…[Read more]