Hi Ian, Thank you for your post, and the kind thoughtful ways of trying to make our minds up on which path to take. I really understand where your coming from, it’s like when I go to day care at my local hospice I find solace with another chap who is in the same situation and we both enjoy each other’s company. He understands what I am going…[Read more]

Hi Jan, Thank you for your post, and especially the point about continuing the Zometa at a time when further bone damage has been shown by the latest scans. I will mention it to the Consultant in April so that I can get the best outcome when considering all the factors.  The second SCT option I just cannot see the overall benefit of going through…[Read more]

Hello Sand, I found your post so interesting and positive about your SCT, yes like you my first dozen or or so Zometa infusions gave me plenty of bone pain but I had really bad bone damage to start with. And after my SCT in March 2015 I was in partial remission until January this year, although the MM was rising all the time and by December last…[Read more]

Hello, I didn’t reply at first because being a little under the weather due to Chemo, but I would just like to say a little late, yes it must very daunting when someone you love is given this type of news so I do really feel for you and your family. Just a little about me first, I was diagnosed with MM in 2014 having severe bone damage, so much so…[Read more]

Hi all, thank you so much for all the replies in regards to the Velcade, I think now I ve read the Velcade info guide I will see if my Consultant is to recommend VCD , if not I will ask. Seems the better combination .

At the moment I feel I need to get onto some sort of treatment straight away because my bone pain has taken off, both my shoulders…[Read more]

Hi David, thank you for the quick reply and info, I will certainly check it out. All the very best. CT.

Hi Molly, I hope your Mum operation really goes well and is fully successful, I had 3 fractured vertibaes repaired and another damaged 1 repaired last October. It was carried out in Medway hospital, they called it Kyphoplasty so a little bit unsure if it’s the same thing, it basically was key hole surgery and the Surgeon filled the fractured…[Read more]

Hello Cheryl,  seems like you were diagnosed the same year as me and went the CDT which again is the same. I was offered to do trials but back then in my shocked confused mind I decided just to take the standard treatment, however it worked in that it managed to knock it back in order to have a SCT.

Your right in thinking about further scans to…[Read more]

Hi Peter, sorry for not replying to you for the message you have written before now, but I have been in hospital with a severe upper respiratory infection. I felt so ill and I suppose I was lucky in that I had an appointment with my Consultant and my wife and I only sat down, and when I said I felt so unwell they examined me and said I was going…[Read more]

Peter, thanks for letting us share your funny situation in the MRI scanner I can imagine the state you must have been in. It would have been an awful type of torture when all you want is to get it all over and done with. It reminded me of a incident of mine in the MRI scanner, I too was waiting to go into the tunnel and the technician asked if I…[Read more]

Hi Peter, yes sorry I cannot help with how they anylis the various types of MM but also would be interested to know. All I know was what was written up on my hospital discharge letter, having spent 3 weeks with so many test every day they would say still looking. I had so so many bloods, Bence jones urine, MRI, CT scans, bone marrow and even bone…[Read more]

Hi Karen, good to hear some of the issues your Dad was having have improved a little, the fatigue is a big issue with me even now after being drug free for some time. It’s the drugs the pain relief and MM itself, the other thing you may want to tell your Dad is that when taking Thelidomide it can give you tingling dumbness in the toes and fingers…[Read more]

Hi Tom, firstly thanks for the very quick reply I thought that maybe you were off line at the present so was happily surprised.

Again that’s really interesting about the scans because the only MRI , CT scans I have had was during the 3 weeks I was in hospital getting the MM diagnosed back in 2014 . So I have really no idea the latest situation…[Read more]

Hi Tom, I know it’s been a number of months since you posted your situation, I haven’t been on the web site for a while so been playing catch up. But if you read this I would be very much interested how you progressed . I also have non secretary MM with no PP indications which meant not getting diagnosed through the normal blood test, until I had…[Read more]

Hi Emsie, Firstly sorry to hear about your husband and I can truly understand the anxiety your feeling, the replies that have been posted are so positive and that is what you need for both you and your husband along side the treatment. I was diagnosed with MM but mine is the kappa light chain one but still amounts to the same treatment. I had my…[Read more]

Hi Karen, I am Chris and was diagnosed in June 2014 at the age of 61, I can understand that you are worried about your Dad and hope that messages like these will help to reassure you.

After I came out of hospital I undertook CDT treatment and after about a year I was able to have a stem cell transplant. However it was pretty tough along the way…[Read more]

Hi Dino,  I read your post with fascination and admiration, it brought back memories of Feb/Mar this year. The pain you describe while doing the cell boosting injections is something that I found underestimated wow it was so painful, my friend who was injecting the same time as me ended up in A&E with chest pain it was that bad. Your positive…[Read more]

Hello, I had my SCT in March this year, and yes had a tough time. I think most of us don’t like to be too graffic for fear of putting off, and also adding to their anxiety. From what you describe is about right although you will find everyone reacts different. I had a pretty torrid time for about 10 days, with infections and all sorts the worst…[Read more]

Hello, Sorry to read about your Dad and that he has come off Thelidomide, due to the side effects.  The CDT treatment has proven to work very well, and yes you get the nasty side effects with these toxic drugs. When I was on CDT the Thelidomide dose was 100mg which I took late at night with Horlicks and a biscuit. I did get neuropathy in the…[Read more]