Thank you so much Debbie for posting this. It is so helpful and reassuring. My husband was a bit upset at first as he thought this might be the cure! He was very irritable and difficult to live with when he was on the Vorinostat. I definitely knew it was week 1 or 3 of every month so I am very happy he has been taken off it, especially as the…[Read more]

Hi Richard, sorry to hear the Revlimid is no longer working. That’s all Graham is on now for his maintenance and I realize it won’t work for ever but just glad it’s working for now and he will make it to his 60th in two weeks’ time. We are having a big party. I can remember reading the figures of 50% surviving 5 years when he was diagnosed in…[Read more]

My husband is on Revlimid maintenance as part of Myelomz XI trial following his SCT. His Consultant said that what he is taking would probably cost about £3,000 a month !!!!!! We could never have afforded that ans so glad that he is on the trial. I hope you can get some maintenance that would be good for you on the NHS.
Angela

Hi Richard
I too hope you get some good results on Monday. Dr A won’t tell you too much about the next stage as he takes things very slowly which is good because it would be too much to take in all at once and you need to concentrate on what’s happening at the moment and see how you do. The main thing is to get rid of your pain and get your…[Read more]

Hi Peter. Graham was only admitted to MRI for about 2 weeks. After stem cell transplant was carried out he was allowed home for a couple of days until he started feeling poorly so that was good. He then had to go straight to isolation when admitted as he had a bit of flu. He also had a morning in intensive care and while there rang me for a…[Read more]

Hi Richard

We saw Dr Allameddine yesterday for Graham’s 3 monthly appointment. His bloods are still good so he carries on normally with his Myeloma XI maintenance (now 3 years in stringent remission). It’s now 4 years since diagnosis and Graham said to Dr Allemeddine that he was only originally expecting to survive 5 years and then Dr A said…[Read more]

Hi Richard, It was great to see a post from you and to see that you are doing so well and learning new skills. I can’t believe it was 3 years ago when you were about to go through the SCT at the same time as my husband Graham. It’s so good that you are both doing so well. Keep it up and I am sure you will see your pension. I am 60 and get my…[Read more]

Hi Pepz, I agree totally with what Rebecca has said. My husband was diagnosed with Stage 3 and at the time you think it sounds so bad compared to Stage 1. i think Stage 3 was because he had damage in his spine with some collapsed vertebrae and he was originally in agony with his back. However, now he is nearly 3 years in remission following…[Read more]

Hi again Richard
Even though my husband has been nearly 3 years in remission he still gets bad chest infections and colds at winter time so he definitely could not have carried on with working as a lecturer in a college full of students. He was 55 at diagnosis and our daughters had been through Uni and now don’t live with us so money pressures…[Read more]

Hi Richard, I hope the Bury Support Group have been in touch with you by now. I wanted to go to their meetings but my husband who has myeloma didn’t want to go so I learned all I could from this forum which was so helpful to us after he was just diagnosed. I used to tell him all the positive things I had learned. He was an IT Lecturer and his…[Read more]

Hi Scott, I remember you from the early days. My husband was on Ward 44 too and diagnosed 3 months before you. He too is still in full remission and on Myeloma XI trial and taking Revlamid and Vorinostat as maintenance. He is now back at the Royal Oldham Hospital for treatment after his 100 days post transplant. You are doing brilliantly if…[Read more]

My husband has now been having Zometa infusions for 3 years and says the pain afterwards has lessened to what it was originally. He now makes sure he has lots of water afterwards so he doesn’t get dehydrated. He has never mentioned sore eyes but definitely gets some back pain and other aches.
Best wishes, Angela

I work at a hospital and once you have said once that you would like copies of clinic letters you should get them automatically after every visit. Just in case though when you arrive for your appointment inform the clerk on reception that you would like a copy of the clinic letter. My husband gets his clinic letters and has never had to ask again…[Read more]

Hi Mark
My husband was probably smouldering for years and unaware of it. He had many pains with hips and back over the years and put it down to his gout. He was diagnosed at the stage of having had a bad back where he would collapse to the floor and after 5 months of intense back pain and physio that made things worse he had an MRI scan which…[Read more]

Hi Faye
My husband decided he would go with the Myeloma XI trial and you are then randomised and the computer in Leeds decides whether you are on it or not. He had his stem cell transplant 2 years ago and has been in remission since. He was then randomised again and is now on maintenance treatment which he is coping well with although I…[Read more]

Hi
My husband is on the Myeloma XI maintenance treatment. After 100 days post transplant he was transferred back to our local hospital and then it was a few months before he was randomised and it was decided he would take maintenance. He realizes he can say no but wanted to go with what was decided for him by the trial and he said he can always…[Read more]

My husband is also in remission and has been for just over a year. He had one infection after another from about October until January or February and was on antibiotics all the time but he has now been ok for a couple of months so I hope your husband gets a break from this soon. In my husband’s case it may be because his neutrophils are low…[Read more]