CancerCompass message board discussion started by Ms.deb on 8/31/2004 http://www.cancercompass.com/message-board/message/all,1280,0.htm Mon, 06 Oct 2008 00:00:00 GMT Mon, 06 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have been told that multiple myeloma can be put into remission. I have been told that they do now know anymore about this disease today then they did in 1964 becuase it is rare. They say after 3-5 treatments that I am a good candidate for stem cell. Ms.deb Tue, 31 Aug 2004 00:00:00 GMT Dear Debbie F., There have been wonderful advances in the treatments in the last several years. I was diagnosed 3 years ago at the age of 50 and given only 6 months to live at tops because I have resistant multiple myeloma. I went through 12 months of several different Chemo treatments which didn't work and almost killed me. Which was why I was unable to have my stem cell transplant. Then I was treated with thalomide which worked for about 18 months but I was still sort of sick, the side effects were hard on me and my counts were not very stable. Knowing it was only good for 12-18 months I thought my time was growing nearer. When it stopped working, my Oncologist was able to try me on Velcade and low and behold it is working great! I have been on it for six months now and I'm in remission. No side effects for me. My IgG counts are within normal range and very stable. I only had one month of treatment most patients get 8 months of treatments. My IgG counts went from over 2000 to 725 after the first treatment. When I was diagnosed my counts were 8500. I wish you all the best ask your doctor about velcade. I wish it was my first treatment because I feel better than I have in 5 years. I now feel back to normal. I hope you respond well to what ever treatment your Doctor uses. Hang in there it is only a matter of time before they find a cure Thanks to Susie N. Sincerely, Darlene Darlene H. Tue, 07 Sep 2004 00:00:00 GMT I was diagnosed December 26, 2003 with Multiple Myeloma. My doctor gave me 1 year to live without treatment. I went to Hopkins and met with the head of the MM department. He notified my local oncologist to start me on Doxil and Vincristine. They did very little to lower my protein levels. I returned to Hopkins and this time he ordered Velcade. Amazingly it lowered my proteins so rapidly that on October 27, I am scheduled for a bone marrow transplant. My younger brother matches me and is going to be my donor. I've been back down to Hopkins a couple times for testing and must return once more and then beginning on October 20 I will be getting prepared for the transplant by getting more chemo and then a full body radiation. It's just too bad that Velcade cannot be used as the first chemo. They told me that you have to have at least 2 other chemos fail before they try Velcade Judeelane Mon, 11 Oct 2004 00:00:00 GMT I was diagnosed December 26, 2003 with Multiple Myeloma. My doctor gave me 1 year to live without treatment. I went to Hopkins and met with the head of the MM department. He notified my local oncologist to start me on Doxil and Vincristine. They did very little to lower my protein levels. I returned to Hopkins and this time he ordered Velcade. Amazingly it lowered my proteins so rapidly that on October 27, I am scheduled for a bone marrow transplant. My younger brother matches me and is going to be my donor. I've been back down to Hopkins a couple times for testing and must return once more and then beginning on October 20 I will be getting prepared for the transplant by getting more chemo and then a full body radiation. It's just too bad that Velcade cannot be used as the first chemo. They told me that you have to have at least 2 other chemos fail before they try Velcade Judeelane Mon, 11 Oct 2004 00:00:00 GMT Hi Deb, I was diagnosed with MM in Aug 2003 and underwent 6 mths of Chemo and an autogolous stem cell transplant in April 2004, which I had awful side effects from, including an arrythmia, which almost killed me. I am feeling alot better now, but not in remission, my Dr. is looking into Thalidomide and Velcade, should know shortly. Have met othe patients that are 7 yrs in remission, so stay positive, I am sure, like myself, you have a lot to live for. Heidi j. Wed, 20 Oct 2004 00:00:00 GMT My husband has Amyloidosis and M.M., he was given thalidomide and dexamethazone. After 1 and 1/2 years of the "dex" he was taken off it, because he almost died. He can no longer take any steroids at any dose. He is still on Thalidomide with minimal side effects. His condition is stable. There is no remission in Amyloidosis. He got as good results as if he had a transplant. If the thalidomide stops working we will go to one of the newer drugs in a more traditional chemo. routine. Textbook, my husband had three years to live with treatment, we are entering our fourth year. Colleen Colleen L. Sat, 30 Oct 2004 00:00:00 GMT My husband was diagnosed with MM in July of 2004. He is on oral chemothearapy (Melphalan) Alkeran and Prednisone. He takes a weekly shot of Procrit, and a monthly drip of Zoledronic acid. His protein level has gone from 4700 to 3300. He is getting stronger each day, but we are not told he is in remission. No mention of stem cell replacement or bone marrow transplant. My husband is 73 years old. We take one day at a time and depend on God to see us through the rough days. Which their have been many. This is a cancer I had never heard of before and it is hard for us to understand exactly what it affects and how it progresses. Any information to help us understand it better would be appreciated. The doctors have not given us any indication of how long he will be on chemo. Wanda Wanda j Mon, 08 Nov 2004 00:00:00 GMT Hello: Contact your local Lymphoma Society for support and information. Under their umbrella of care, they cover amyloidosis, and multiple myeloma. There are so many sub groups and complications. I have found our local unit to be a great source of support. Colleen Colleen L. Wed, 08 Dec 2004 00:00:00 GMT Dear Darlene, I read about your case and I'm glad things are looking good for you. I'm hoping you can help me. My brother is 37 and a father of five beautiful children. He was diagnosed last year in April. He was in good health until recently. His IgG is 7500, he has high calcium and creatine. He broke his back in several lumbars and also two ribs. I am so concerned. He is at the Univ. of Penn. right now because he cannot move and basically, we are hoping for a miracle. Any and all (good or bad) information would be beneficial. Nobody in our family has ever had any form of cancer. I wish you the best in your remission. I hope it continues and you live a wonderful and happy life. In my heart, I know this can be beat. Thanks, Beth Mmhope Thu, 30 Jun 2005 00:00:00 GMT Dear Mmhope, I am sorry to hear about your brother. This is now a very forgiving cancer. However, the new drugs they are using now are really working. With the approval of revamide, which is better than thalidimide, it has less side effects and now that they are allowing the treatment of Velcade after just one other type of treatment has failed instead of two. I would check with his doctors about getting velcade. I still am in remission and it has been over a year. I am in Daytona Beach and we have a wonderful oncology dept. My doctor has told me that he has had fantastic results with velcade with his other patients also. He said it works better than the transplants, less dangerous and less expensive. I have been lucky enough that it has not done any damage to my bones yet. I wish you and your brother well. My prayers are with you. Sincerely, Darlene Darlene H. Sat, 02 Jul 2005 00:00:00 GMT Hi Darlene, my brother is going in for a procedure tomorrow to fix 1-5 lumbars with a plasteo type product. He will get two fixed Wed. and the rest hopefully Thurs. He will be in the hospital for a few days. We hope it helps his back issue. Next week he will speak to his oncologist at Penn to determine the best treatment for the MM. Thanks for info on treatments and your prayers. It is greatly appreciated. Hope you are well. Sincerely, Beth Mmhope Tue, 12 Jul 2005 00:00:00 GMT Dear Beth, I hope your brother is doing well. I'm sorry for the delay in my reply. I do hope his back surgery went well. How are you holding up? I am still waiting for my counts to climb higher before I can get more Velcade. I get my answer to that on 8-31 this Wed. One thing for sure is that my counts are rising very slow, compaired to before I was treated with the velcade. Before my IgG counts would double in a matter of a few weeks. 18 months after my first velcade treatment my IgG counts are now rising above the 750 normal range. In the last five months my IgG counts have only climbed up to 1325. Which is fantastic in my book. This drug must be doing something right. I wish only the best for you and your brother. Darlene Darlene H. Sat, 27 Aug 2005 00:00:00 GMT Hi Beth, I just read your message. I was diagnoised with MM in 2002. I was taken to the hospital in an ambulance because I could not move. I did not know at the time what I had. I had fractured my back also. I stayed in the hopital for 3 weeks. I went through 4 months of chemo, and in Sept 2002 I had a stem cell transplant. I hope all goes well for your brother. Please let me know how he is doing. Paula Papbic Sat, 04 Mar 2006 00:00:00 GMT