Take care love Gill

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

Gill x

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]

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]

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

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

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]

As you said bite down and hold on

Gill x

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

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]

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]

I had a bad bout of mucossitis and could not eat for over…[Read more]

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]

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]

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]

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]

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]

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]

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]

It is good news, you are heading in the right direction and if a full remission is possible that is fantastic news. I have lived with this for many years with no treatment but getting lots of infections, bone pain and tiredness my pp was always around 9 and my pcs were 10% so I lived with it. I cannot imagine ever getting to…[Read more]

That is fantastic news, I am sure all the tears are the built up emotions of the past few weeks and the news sinking in but things will get easier. We have to remember we are on the journey now to remission and it will have its ups and downs but we will get there judging by the postings on this site.

I think the tiredness is the…[Read more]

I hope you got the good news yesterday and are looking a little less like a pin cushion.

Scott I hope you got good news too, I had a wonderful cruise last year to the Far East and I always said I wouldn't do a cruise but we really enjoyed it we saw so many wonderful places and the food on the ship was amazing. I am sure tha you and…[Read more]

Great news about getting out of hospital, its a pity about your plans for the future with the house. I think you just need to take it one day at a time as I am sure that like me every day is different at the moment, some days I feel fine and other days I feel really sick and lethargic other days I get a lot of pain. So sit back and…[Read more]

I thought it was just me, I cant seem to stop eating and have a craving for chocolate which I don' normally get. It must be the tablets I was thinking after my birthday I will really try hard to eat fruit instead of all the other things but then I think at this time we need to be pampered so a little of what we fancy can't do us any…[Read more]

I am glad the radiotherapy went well hopefully you will start to get better soon. I am starting my second week of chemo tomorrow and so far I have been OK apart from the constipation one or two others have said they have had. I had a bad few days of pain with the Zometa and although it is better it has made my head worse, I find it…[Read more]

So sorry that your dad and husband has developed this at such a young age but I agree with Dai things are changing all the time with treatments. Although I have only started treatment yesterday I have been screened for the past 17 years and things have changed a lot in this time.

Dai I think I have chemo brain without…[Read more]

I am sorry you are having such a bad time. I was lucky as I have been monitored for myeloma for the last 17 years but this is the first time I have needed treatment. It was picked up as being active by my GP because I was feeling so tired. I have had pain in my back and head but I just put it down to wear and tear so never mentioned…[Read more]

My name is Gill and I am 59, well I am for the next 2 weeks anyway. After 17 years with MGUS I have just been diagnosed with myeloma, I just can't believe it. There seems to be an awful lot to take in, I suppose I am lucky as I have been screened regularly it was picked up fairly eary. My only symptoms are tiredness and back ache. I…[Read more]

I can empathise with you, I am another Gill (59)recently diagnosed and haven't really got my head round everything yet. I am having my skeletal survey done tomorrow and then seeing the doctor to discuss treatment. Like you I feel this site will be very useful and the support from others in the same position seems to be great. Maybe we…[Read more]