CancerCompass message board discussion started by Akb1027 on 7/31/2005 http://www.cancercompass.com/message-board/message/all,2620,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am 44 y/o female with light chain myeloma that started with MGUS in 12-2003. I just started velcade (previously treated with Dexmethasone), due to my protein levels increasing. I also suffer from neuropathy and bone pain which has progressively increased in the past two years. I am not a big internet person, but I have read about MGUS, myeloma, etc over the internet to learn about my disease. The thing that bothers me is it's poor prognosis, although the Dr. says its possible to go into remission. Anyone else familiar with light chain disease? Thanks for listening. Akb1027 Sun, 31 Jul 2005 00:00:00 GMT To AnnB:I have BJ light chain disease, and also chromosome 13 deletion. I was diagnosed in Dec. 2002. I have been treated with standard induction of thalidomide and dex. for four months prior to stem cell transplant. I am currently in partial remission with stable disease. At the time I was on thal/dex. this was considered new and in trials, which it still is. I think it's hard to get a good prognosis when much of what was standard treatment is no longer standard. Therefore prognosis on specific disease configurations may not be accurate because the treatment regime is not the same as it once was. Since your on valcade that would seem to apply in this situation. Charles L. Tue, 02 Aug 2005 00:00:00 GMT How well I can relate to your message. I was treated with Doxil and Vincristine for a long time with scarcely any reduction in my protein levels. After my second round of Velcade they started coming down very rapidly and by the third round they were down sufficiently to have my bone marrow transplant with the hopes of putting me in remission. I had my transplant October 2004. I live in PA but had my transplant at Johns Hopkins Hospital in Baltimore. If I can be of any other help with questions or information please don't hesitate to ask. I just don't know what you would like to hear. Judeelane Tue, 02 Aug 2005 00:00:00 GMT Some people have found help for the neuropathy with a homeopathic preparation called Hypericum Perforticum. It is safe, inexpensive and will not interfere with any other treatment. Nancy C. S. Tue, 09 Aug 2005 00:00:00 GMT Anne B I also have light chain disease, lambda light chain to be exact, diagnosed in 1/04, initially and unsuccessfully treated w/thalidomide/dex and then, preparing for transplant, Cytoxin twice. when neither worked, we switched to Velcade/dex and that did it. I've been off chemo since January, in remission, checking serum light chain levels every 3-4 months, Zometa monthly. My doctor says he has no idea why I am doing as well as I am. I know folks who have had this, in one form or another, not necessarily light chain, up to a decade so... some things are possible with and w/out transplant. I have neurorpathy, probably from the Velcade, treated/controlled w/morphine and gabapentin [Neurontin] and then methylphenidate [Ritalin] too counteract the sedation of those and do ok. I can be up for 12 hours a day then have to get horizontal and can read detective trash but can't talk or even watch tv. Even typing is exhausting and I take FreeCell breaks to take the pressure off my back of having both hands on the keyboard. blessings to you Marilyn in Silverton Oregon Kids808285 Fri, 19 Aug 2005 00:00:00 GMT Hello, My husband name is Don and he has light chain MM. We did the Vads and thilomide and none of that worked. He was in stage 3B with renal failure. We took the velcade and it worked so that we were able to get a stem cell transplant. We had the transplant Aug 2004 and we are now in remission one year later. We don't know for how long and he is on morphine and oxy-contin for the back pain it helps but the pain is still there. Be aware we were on the bonestrengthning and Don's bone started coming through his gums. They had to stop the aredia. With this dreaded disease we take one day at a time because we have the big fear that it will come back much harder the next times. When we were first diagnosed in sept 2003 a dr asked us how is our faith in God because we are going to need it. Man was he right. We do a lot of praying and have Don on everyones prayers list and had his family touch him and pray over him. God does hear our prayers. We might not like the outcome but I do know he is walking with my husband and our son and me. I wish everyone well. Thanks Brenda Lovedone Tue, 30 Aug 2005 00:00:00 GMT Hypericum perforatum is also known as St Johns Wort which has been taken for many years as a 'natural'remedy for depression and neuropathy. It was assumed, as is often the case with 'natural products' that it did not interact with any other meds. It has since been shown to interact with a whole range of medicines, by way of switching on a series of enzymes that help metabolise other drugs in the body. That is, it can cause levels of other drugs in the body to be higher than normal leading to toxicity. Please be careful when taking homeopathic or herbal remedies. These can be very effective treatments, but should not be thought of as 'harmless'. Why not ask your local pharmacist if any drugs you take interact with each other? They are the best people to ask about any info on drugs and side effects - its who your doctor gets his info from! Beeches51 Fri, 25 Nov 2005 00:00:00 GMT