Hi Andy. Can't help out on the alcohol as I don't drink. But on the pp level I went down from 38 to 20 on CDT then plateaued. I went in for harvest After first day of harvest consultant came round to say pp had gone back to 34 in 3 weeks and sent me home to be put on velcade. Plateaued again at 18 but they put stem cells they had collected at 34…[Read more]

Hi suzie sorry u have to join the happy bunch here but that is what they are and very supportive. I went to my doctor with tiredness and was sent to a haematologist soon after as my para proteins were 37. But I had no calcium or anaemia. My bone marrow was 13% I was told anything above 10% without other symptoms was called asymptomatic or…[Read more]

Hi Bridget just been reading all your posts. Like everyone I can't find the words but wanted to let u know I am thinking of you and will be praying that they find something that will help you. You are so positive and an inspiration to us all. You are always their with a kind word for others. Keep that positive attitude. Day at a time Love kay x

Hi Mavis I was on CDT and thalidomide gave me lovely night sleeps. Dex kept me awake and made me irritable when I came off them each time. But all in all I still continued to work 4days a week. I injected myself each day and I found it was ok but I agree with others don't do it if u don't feel comfortable with it. All the best kay x

Everyone is different. It will be up to your consultant. But whatever they say they know what they are doing and it will be for the best. Have another chat with them and ask the question. I just wrote down questions as they popped into my head. There is light at the end of the tunnel now. Best wishes kay x

Hi penny how did it go yesterday. Any date for SCT. I was also a lucky one. They kept telling me I was boring 🙂 no infection, one bout of diarrhoea, one bout of sickness and home in two weeks. I was also quite fit when I went in and 46 years old. I think it helps. Good luck and keep in touch kay x

Hi Andy good luck with your journey. It is an emotional roller coaster. But as It was said to me "it's not a walk in the park but you will get through it" and like others I did with the help and support of this site. People here have either been through it, are going through it or will be going to go through it. So stay close x

Such great news Tom. It will keep me going, positive and strong. Kay x

Hi terry. It is a shame they did not tell u about two day stint. Me and my friend stayed in the hostel over the road free of charge and it was really nice. They wanted 8 million from me for two transplants but got 4 which was enough for one transplant. I am at barts for last time on 19th march. Would be happy to pop in and say hello if u wish.…[Read more]

Hi terry I'm assuming u had your harvest yesterday. Hope all went well. I was in barts too and they are fantastic. I was one of the lucky ones who breezed thru it. One bout of diarrhoea, one bout of sickness and no infection. They kept telling me I was boring:-) but even if you do have any side affects they are constantly monitoring you and give…[Read more]

Hi Mandy so sorry to hear about your mums pain and also that she has this horrible illness. Treatment affects people differently, but I can understand her frustration with the PN. I was extremely active before treatment and now I have finished the only thing that is still with me is PN. Gabepentin is what I am on. It takes time to build up in the…[Read more]

Oh well saw Rheumatologist. He does not think it is arthritis. Did loads of blood tests. Maybe gout!!!!! oh great on top of MM I have pain in every joint of my body now. Prescribed co codomol for pain until blood tests back. Dont want me to have anti inflamatories because may cause kidney problems. Saw that Bonefos can cause joint pain. Maybe…[Read more]

Hi Mandy. Your poor friend. Firstly to find out she has Myeloma and then having difficulty in swallowing the medication which is ment to help her. I think Anne's suggestion of contacting Ellen on the Myeloma infoline is a way forward. Your friend's problem must have come up before. Wishing you both all the best. Kay x

It will be a tough few days, but for me the waiting is the worst. Once you know what is happening at least you can start to deal with it. HB is haemoglobin which makes the red blood cells which carry oxygen around the body. It fell and I was exhausted. My consultant said 'it proves to me you cannot make healthy blood and we have to start…[Read more]

Hi everyone. Just wanted to let you know I saw my consultant Monday and it all looked grim. She said my SCT was a disappointment. My last 3 PP results were 16, 18 and 22. Good news was she believed my bone/joint pain was rheumatoid arthritis and she wanted to get that under control as I am in so much pain, but she did not have the results of the…[Read more]

Hi Dai I do wish you all the very best. When I was speaking to my consultant on Monday she was telling me about a new trial (did not take in the name) and she was so excited about it. It gave me hope that if I did need it I was more than happy to try it. Do let us know what you are randomised too. Kay x

Hi Amelie I had my SCT in September and my PP has risen for the last 3 blood tests, but my consultant said she is not worried due to my HB rising consistently. When I had to have treatment it was because I became anaemic and that is what they will look for rather than rising PP. Myeloma is so so different for everybody. I do wish you both all the…[Read more]

What fantastic news for you both. Enjoy hearing the positive side of this illness. I had SCT in September and came through it really well. Out in two weeks and now I am back to work. Love Kay x

Thank you all so much for your replies. Lorraine you have given me a lot of hope. Scan went ok. I believe they are thinking about putting me on revlimid but we shall see on Monday love Kay x

Thank you all for your lovely replies and thoughts. What a pain Myeloma is. So great to have the support to share with. Kay x