I am really sorry to hear your news, I wish I could say something better but words are difficult at a time like this. I do not contribute often to the site but regularly read the posts and followed Pauls.

Take care love Gill

Hi Eliz,

Thank you for your kind thoughts, I am sure I will enjoy my holiday I am really looking forward to it.

Gill x

Hi Charlie,

Everyone is different when it comes to Myeloma so although they could not delay my treatment they may be able to delay yours. I had been attending The Chrisite for 17 years for regular checkups. with the MGus/ smouldering myeloma I used to get more infections than anyone else and felt tired more easily but that was all really. But I…[Read more]

Hi Charlie,

It is a personal choice whether you go for the trial or not but for me it worked and I would do it again even though I had a bad time.

I started on the Myeloma X1 trial last July the day before my 60th birthday, I asked if I could delay treatment for a week or two but was told the treatment couldn't wait.

I got randomised for…[Read more]

You have given me hope to as it seems so long since I have had a holiday. I had my sct in January and have had a very good partial remission. Unfortunately I have had a problem with fungus in my lungs which floored me and I spent three weeks in hospital, I am home now still not better but hopefully getting there.

We have decided to have a week…[Read more]

I am home after almost three weeks in hospital, I am still no better and they cannot find the cause of the fungus which is a concern. I am still on antibiotics which aren't working and am having another CT scan on 10th July. The hope is that the nodules have shrunk which shows that the antibiotics are working or that they have grown enough so I…[Read more]

I am very sorry to hear about your mum she will be sadly missed and although I don't post very often I always looked for Bridgets posts as she always had such good advice and a very good sense of humour. I have been wondering about her over the past few weeks as I hadn't noticed anything from her.

I will be thinking of Bridget,you and your…[Read more]

Hi Susan,

How did you go on at the clinic with the results of your tests? I came in to clinic for a scan over two weeks ago and because my temperature was high they kept me. I have swelling in the colon so I had a Sigmoidoscopy which didn't show much. After I had been in for a week they re-looked at the CTC scan and noticed that I have nodules…[Read more]

That is fantastic new David,I'm sorry about your chesty cough, sure you will be fighting fit again in s couple of days.

As you said bite down and hold on

Gill x

Hi Jacqui,

Welcome to the site, as others have said you will get some very good advice from people on this site and whatever problem you have they will always be there to help and support you.

Gill x

Hi Sue,

I am sorry you are still suffering after three years this seems an awfully long time. I haven't found out what irritates me yet, I have been keeping a food diary but it is difficult as my stomach is so sore all the time. I wanted to cut out solid food for a few days and see if I was any better but the consultant said I need to put on…[Read more]

Hi Eva, Dai and Helen,

Thank you all for you replies, Eva I too had bad diarrhoea and sickness and was in hospital for a month. I came out on the Thursday and was back in for another week on the Friday. I am still being sick and on antisickness tablets although it is now only 3-4 times a week so I am getting there. Like your hospital Helen my…[Read more]

Hi Jim,

I agree it is such a shock to find yourself with this dreadful disease but there is hope. I too am recieving treatment at The Christie and was selected for CTD on th X1 trial. The main thing that affected me was the steroids, at the end of my fourth cycle I could not even walk upstairs. My face was so bloated I looked like Moonface out…[Read more]

Hi Paul,

I have worked all the way through I haven't taken any time off but I have a business to run and staff who have holidays and sickness and school holidays lol. I was also quite lucky as I was being monitored and although I had to start treatment straight away I had minimal bone damage. I am having a week away in October, I can't decide…[Read more]

Hi Paul,

I hope your treatment is going well and you are started on your 2nd cycle now. Don't worry about not knowing much about this we are all on a learning curve, well I know I am.

I am not sure what type of myeloma I have no one has ever said, although I think it may be Heavy chains as they always talk about the paraprotein levels but i…[Read more]

Hi Sally,

Sorry to hear about your dad, hopefully you can help him get through this. I hope my own experience can help you, I had MGUS for a long time before needing treatment which I started 6 weeks ago. I am 60 and work full time which I have continued to do as I have my own business. I have found that since starting treatment I get good days…[Read more]

Hi Ted,

Welcome to the forum, I have only recently joined myself but was in the same position as yourself. I was diagnosed 17 years ago and was having regular checkups at the hospital and like you always felt such a fraud when there were so many sick people in the clinic. Like you I had lots of infections and pains in my ribs and back but while…[Read more]

Hi Lara,

Welcome to the site, I hope by now your father is feeling much better. I am in my second cycle of treatment of CDT so probably the same as your father. I found that the first week was the worst, I think it is our bodies just getting used to the onslaught of all the drugs. The first week we have everything the chemo, steroids and the…[Read more]

Hi peggy,

I am so glad you are coping with your medication, as someone else said it is better to be able to control your medication with tablets than having to attend for treatment twice a week. Like you I have just started on the trial but I got the cheap one!! I am just finishing my first cycle and go back on Friday, I find the worst time is…[Read more]