CancerCompass message board discussion started by Ron B. on 10/14/2002 http://www.cancercompass.com/message-board/message/all,609,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Had an autologous transplant in February, 2002. Doing fine. Anyone interested in a dialog regarding their treatment and experiences? Ron B. Mon, 14 Oct 2002 00:00:00 GMT My Mom is a patient at Sloan Kettering. She had stem cell last April but the cancer came back after a year. They put her on Thalidomide which helped but she got an allergic reaction. She's now on Arsenic treatment which they hope will bring remission by the 1st of the year. My mom's condition is complicated by the fact that she has diabetes, high blood pressure and a bum thyroid. She is 69 years old and still on her feet since being diagnosed with MM three years ago. She also gets Procrit shots and Aridia (a bone strengther). Deborah M. Tue, 22 Oct 2002 00:00:00 GMT Hi Deb, what were the first signs of MM return? I just turned 50, diagnosed last year through kidney failure. Doing pretty well now. Has your Mom talked abour Zometa rather than Aridia? Zometa has some plusses (15-30 minute infusions). I started on Aridia, now on Zometa every 3 weeks. I understand diabetes can be a real tough complication, but I have no knowledge of others in that position. Best wishes to you and your Mom. Ron B. Wed, 23 Oct 2002 00:00:00 GMT In my research for information on a special lymphoma, Waldenstrom's Macroglobulinemia, I have found that WM is repeatedly lumped with MM in treatment. I was diagnosed with WM in June, 2001. Recommended treatment was chemo followed by rescue transplant of stem cells. However, through much prayer and God's guidance, supported by my oncologist, I elected to follow a different, non-chemo, non-transplant path. We tried Rituxan first. This was great from the standpoint of minimal side effects. I experienced about 50% disease metrics reduction. The explanation was that Rituxan was effective against only CD20 "marker" cells, but that other malignant marker types were also present. Following this, I tried "BLTD". This caused some varied, unpleasant side effects, most severe being strength loss. God blessed me with success on this one, with REMISSION within three months. Side-effect symptoms are almost disappeared, and strength is almost back to normal. BLTD is also prescribed for MM, actually, probably before WM. If I had MM or WM, I would try this first, unless a newer substance/method were available with a better performance record. William H. Wed, 23 Oct 2002 00:00:00 GMT I found that I had MM in Jan. In July I had a stem cell transplant. I do not remember anything from the time I was undergoing the treatment. I remember the bags being hooked up and then waking up in ICU. There is more to that story but not for now. Now they want to do another transplant. I am afraid of what will happen this time. I am retired military and I am going to Walter Reed Med Center. MM may be the result of exposure to Agent Orange in Vietnam. Raymond D. Sat, 26 Oct 2002 00:00:00 GMT Hello, My name is Mary. My husband had an autologous transplant last Monday I am very concerned - I really don't know what to do. He has been having a lot of problems with loose bowels and nausea. They gave him medication for this but he doesn't think it is helping. He has called the last 2 days and told me not to come see him. I am at my wits end - is this a normal reaction to the Stem Cell Transplant???? Thank You, Mary E. Steven E. Mon, 26 May 2003 00:00:00 GMT My husband has Amyloidosis, and first stage multiple myeloma. He also had COPD. Four months into his chemo he developed diabetes and had an atrial fib. His chemo was oral. He takes thalidomide every night. Also with that he took high dose steroids. He stopped taking the "dex" steroids in December. He had developed complications to the point that he could not walk at all. Since being off the "dex" he regained his facilties. He gets zometa once a month at his clinic visits. Other side effects he has are neuropathy in the hands and feet, fatigue, taste changes, some memory and attention changes. When he started chemo he developed at the same time a sore spot under his partial in his lower left jaw. No one thought it was serious, til he had alot of pain. The oral surgeon said the problem was bone being exposed in the jaw. Well, we had another consult and the problem is osteomyelitis, an infection of the bone marrow. My husband is going to get a pic line put in Tues. and surgery to get a biopsy and clean the wound, and remove some jaw bone. The new surgeon ( who thank goodness is the head of this surgery dept.) will also put him in oxygen therapy and check for any other problems such as a tumor or plasmacytoma. So, maybe this jaw problem was his main myeloma problem area. Because my husband is so over weight and has the extra health problems he was not accepted in any trials or for stem cell therapy. They intend to keep him on thalidomide til it does not work, or he has declining health from it. Hope this long answer helps you guys! Keep your faith! Colleen L. Colleen L. Thu, 13 May 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 am schedule to have an Allogeneic transplant on October 26, at Hopkins. My younger brother matches me and is going to be my donor. I went through Doxil and Vincristine and they didn't help me. They then put me on Velcade and my protein levels came down right away to the level that I can now have the transplant. Without it my oncologist said I had 1 year to live. That was on December 26, 2003 I am both excited and scared about the upcoming transplant. Judy Judeelane Mon, 11 Oct 2004 00:00:00 GMT Hi Judy, There are some side efeects from the chemo used prior to the stem cell transplant, such as the breakdown of the membranes in your throat and diarrhea. Make sure that you drink/eat as much as you can, as my electrolytes went out of whack, causing an arrythmia, which almost killed me...but I am fine now...my Dr. is looking into Velcade, as my stem cell transplant (they were my own) didn't work as well as they had hoped, but met a few people that have been in remission for over 7 yrs, so be positive. I am only 36 yrs old, and want to see my sons grow old.. so I will continue to fight the good fight...take care...hope all goes well. H. Heidi j. Wed, 20 Oct 2004 00:00:00 GMT Hey, just getting started with this, I was diagnosed with MM about a month ago and have pretty normal labs except for the protein. am to start thalidomide and dexametasone tomorrow and then a stem cell transplant in june or so. I am a bit curious about the transplant - I understand how they get the stem cells but do they then give you chemo to wipe out the marrow and then give you the stem cells. what was the experence like? Would be interested in hearing of your experence. Doctorjohn Tue, 22 Feb 2005 00:00:00 GMT Hey, I was found to have multiple myeloma during a routine exam in dec. after some fits and starts, I am asymptomatic but because of the cytogenetics the decision was to start induction chemo with thalidomide and dexamethasone. I started about 10 days ago and adjustment has been difficult. They tell me that this goes on for 4 months and then a stem cell transplant. I am having difficulties with the highs from the steroids but the crashes when it comes off is much worse. Think that I am adjusting to the thalidomide. Is difficult as I am a dr. and is hard to go through all of this and be sharp seeing pts. I would really like to hear of anyone that has done this treatment, as it is hard to get a straight story out of most and while I anticipated some of these effects the intensity really took me by surprise, so the treatment for this asymptomatic disease is so far worse then the diagnosis. Love to hear from anyone. Doctorjohn Tue, 08 Mar 2005 00:00:00 GMT Re ups and downs from dex., talk to your primary doctor re depression/anxiety meds (e.g. fluxetine) to help your body handle mood changes while going through treatment. Steroids are the pits but they fight the cancer so hang in there. I'm sorry you have to keep working through this...I was able to retreat to my bedroom and read when coming off dex and just avoid people. I was on thal. and dex for a year; I'm now awaiting stem cell transplant. Cancer level from 65% down to less than 5%. If anyone has suggestions for "getting through" after chemo, for patient and caretaker, please respond. Sharron Wed, 04 May 2005 00:00:00 GMT