CancerCompass message board discussion started by Auroraa on 11/17/2006 http://www.cancercompass.com/message-board/message/all,7851,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, My 78 yr old father was diagnosed with chronic leukemia apx. 10yrs ago from a bone marrow biopsy. In the last several years, he has had to have blood transfusions but now in place of blood transfusions he gets procrid shots. 2 weeks ago the doctor took bone marrow from my dad and said that there may have been a possible misdiagnosis, that he may have Waldonstroms Macroglobulin disease but won't know until after his urine analysis is back from the lab. I have never heard of this blood disorder before and I wondered if anyone reading this could prepare me with what to expect if this is truely what he has? Anyone have especially good results with certain medications that I should ask my doctor about? I would appreciate your feedback. Aurora Auroraa Fri, 17 Nov 2006 00:00:00 GMT Waldenstroms macroglobulinemia is a rare, chronic cancer that is classified as a low-grade, or indolent, type of lymphoma. (Indolent lymphomas tend to grow slowly and cause fewer symptoms.) It affects plasma cells, which develop from white blood cells called B lymphocytes, or B cells. Treatment may or may not be necessary and most patients can live for years with this lymphoma. Let us know what the plan is. Oncrx Fri, 17 Nov 2006 00:00:00 GMT Waldenström's Macroglobulinemia ----------------------------------------------- Waldenström's macroglobulinemia (WM) is a cancer of lymphocytes (a white blood cell). It is similar to Non-Hodgkin's Lymphoma (NHL). WM was first described by Jan Waldenström in 1944 in patients with bleeding from the nose and mouth, anemia, and increased levels of a heavy protein called macroglobulin. WM was originally felt to be related to multiple myeloma due to the presence of monoclonal gammopathy, but was later reclassified as a lymphoplasmacytic lymphoma. WM is rare with fewer than 1,500 cases occurring in the United States annually. Symptoms include weakness, fatigue, weight loss, oozing of blood from the nose and gums, neuropathy, lymphadenopathy, splenomegaly, and hepatomegaly. A diagnostic feature of WM is the presence of an IgM monoclonal protein that is produced by the cancer cells, and a concurrent decrease in levels of uninvolved immunoglobulins IgG and IgA. Median survival is approximately 5 years from time of diagnosis. WM may progress to multiple myeloma. Treatment includes chemotherapy: rituximab, chlorambucil, cyclophosphamide, and corticosteroids; plasmapheresis; or autologous bone marrow transplantation. Amnia Fri, 17 Nov 2006 00:00:00 GMT Amnia Good to see you and hope you are well. Oncrx Sat, 18 Nov 2006 00:00:00 GMT interesting that this was moved to the leukemia site. WM is actually a form of NHL, so it should be in the lymphoma site. Oncrx Fri, 08 Dec 2006 00:00:00 GMT  On 11/17/2006 Auroraa wrote:Hello, My 78 yr old father was diagnosed with chronic leukemia apx. 10yrs ago from a bone marrow biopsy. In the last several years, he has had to have blood transfusions but now in place of blood transfusions he gets procrid shots. 2 weeks ago the doctor took bone marrow from my dad and said that there may have been a possible misdiagnosis, that he may have Waldonstroms Macroglobulin disease but won't know until after his urine analysis is back from the lab. I have never heard of this blood disorder before and I wondered if anyone reading this could prepare me with what to expect if this is truely what he has? Anyone have especially good results with certain medications that I should ask my doctor about? I would appreciate your feedback. Aurora HI, I also have WM, which is very rare for a woman, it will be 2 years in Jan, since they dx'd this, I have been taking the Rituxan treatments and I am doing great! Since I started the treatments, all my blood work is coming back totally normal!  I am only the 4th patient my Onc. has ever treated with WM, because of the rarity of it, except for getting tired now and then, I have done great!  I know one of the patients my onc. treated, lived 10 years with this, and he died of the flu! The WM will not kill you, it is what you will catch or get. because of the compromised immune system.To be honest. I have not changed my lifestyle at all, I do all the things I have always done,  even went camping this summer and tubing on the lake!  The main thing my onc told me is........keep a positive attitude, a smile on your face and your faith in God! I weighed 134 pounds when I first saw the onc, I am now up to 184 and I am 5 foot 8!  I have to admit, when I was first DX's I was scared to death, but I have an awesome support group, and prayer board, that I belong to, and these folks have helped me so very much, they give me so much support and positive feedback, and most of all they pray for me, and I know that has helped me tremendously. I don't know what I would do without them, it is www.allin1accord.com, and the user name is praise and PW is love, we would love to have you join us, if you are looking for a great support group, they are like a family, we laugh, pray and really care about eachother, we have many cancer survivors there too, that really encourage the others, I will be praying for you, and please feel free to join us, I will be praying for your dad as well, I can tell you this, it is not a death threat as I thought it was, it's something you learn to live with, be sure and find an ONC that has treated this before, that is so important! God bless you and your dad, and I pray all goes well for him.......Pat  Pat46350 Thu, 28 Dec 2006 00:00:00 GMT HI, Sorry I should have posted this up here, sry for the double post! I also have WM, which is very rare for a woman, it will be 2 years in Jan, since they dx'd this, I have been taking the Rituxan treatments and I am doing great! Since I started the treatments, all my blood work is coming back totally normal!  I am only the 4th patient my Onc. has ever treated with WM, because of the rarity of it, except for getting tired now and then, I have done great!  I know one of the patients my onc. treated, lived 10 years with this, and he died of the flu! The WM will not kill you, it is what you will catch or get. because of the compromised immune system.To be honest. I have not changed my lifestyle at all, I do all the things I have always done,  even went camping this summer and tubing on the lake!  The main thing my onc told me is........keep a positive attitude, a smile on your face and your faith in God! I weighed 134 pounds when I first saw the onc, I am now up to 184 and I am 5 foot 8!  I have to admit, when I was first DX's I was scared to death, but I have an awesome support group, and prayer board, that I belong to, and these folks have helped me so very much, they give me so much support and positive feedback, and most of all they pray for me, and I know that has helped me tremendously. I don't know what I would do without them, it is www.allin1accord.com, and the user name is praise and PW is love, we would love to have you join us, if you are looking for a great support group, they are like a family, we laugh, pray and really care about eachother, we have many cancer survivors there too, that really encourage the others, I will be praying for you, and please feel free to join us, I will be praying for your dad as well, I can tell you this, it is not a death threat as I thought it was, it's something you learn to live with, be sure and find an ONC that has treated this before, that is so important! God bless you and your dad, and I pray all goes well for him.......Pat  Pat46350 Thu, 28 Dec 2006 00:00:00 GMT I was diagnosed with WM in 2003. I have not gotten any treatment yet. I go to my oncologist anywhere from every 3 months to every 6 depending on my lab results. I get tired very easily and am wondering if I should be on any treatment yet. I adore my oncologist and he seems to be up to date on treatments with WM. He had called me in after one testing because he was concerned the levels had increased but when I got there he said everything was fine. Should I consult another onc? On 11/17/2006 Amnia wrote: Waldenström's Macroglobulinemia ----------------------------------------------- Waldenström's macroglobulinemia (WM) is a cancer of lymphocytes (a white blood cell). It is similar to Non-Hodgkin's Lymphoma (NHL). WM was first described by Jan Waldenström in 1944 in patients with bleeding from the nose and mouth, anemia, and increased levels of a heavy protein called macroglobulin. WM was originally felt to be related to multiple myeloma due to the presence of monoclonal gammopathy, but was later reclassified as a lymphoplasmacytic lymphoma. WM is rare with fewer than 1,500 cases occurring in the United States annually. Symptoms include weakness, fatigue, weight loss, oozing of blood from the nose and gums, neuropathy, lymphadenopathy, splenomegaly, and hepatomegaly. A diagnostic feature of WM is the presence of an IgM monoclonal protein that is produced by the cancer cells, and a concurrent decrease in levels of uninvolved immunoglobulins IgG and IgA. Median survival is approximately 5 years from time of diagnosis. WM may progress to multiple myeloma. Treatment includes chemotherapy: rituximab, chlorambucil, cyclophosphamide, and corticosteroids; plasmapheresis; or autologous bone marrow transplantation. -----end quote------ Michellejanice Wed, 28 Mar 2007 00:00:00 GMT