Hello to all! I am new to this group. I was wondering if anyone did the 21 day relivemed with dex along with the weekly Velcade shot? Wondering how well it is tolerated......I'm a little nervous about it but my dr's tell me i will do fine with it with minimal side effects. Would appreciate any positive input!
Welcome, fightingmom! My husband (who is also 46) has AL Amyloidosis with cardiac and GI involvement. He was diagnosed in May 2013 at Mayo Clinic in Rochester, MN. He went into cardiac arrest twice, 5/31/13 and 6/26/13 and fortunately, I was able to revive him. He then had a defibrillator implanted on 6/27/13.
He began chemo on 6/10/13. Velcade shot, Cytoxan, and Dexamethasone once a week. When he started, they were pretty sure his heart would not tolerate a stem cell transplant. After 16 weeks of chemo, his numbers have improved so much that the doctors are thinking remission is within reach...without a SCT. His Lambda Free Light Chain numbers were 31.2 mg/dL on 5/10/13, down to 3.27 mg/dL on 10/15/13. Normal range is .5700 to 2.63.
He is taking 2 weeks off to go back to visit family in Ohio then will have 8 more weeks of chemo. If he continues to respond to the treatment the way he has, they expect that he will reach remission by the end of the year and then they would like to harvest some of his stem cells and freeze them in case he starts to spiral downward again.
He has tolerated this mix of meds very well. There was some vomiting in the beginning but the oncologist adjusted his daily meds and all was better.
Although remission is within reach, it will be years, if at all, before he sees any improvement to his organs. At least he's not getting worse.
If you haven't researched cardiac amyloidosis on the Mayo website, I highly suggest it. Also search Youtube for videos from Mayo doctors on cardiac amyloidosis. They are doing some amazing things!
Please feel free to contact me if you have any questions! We have learned a lot this year and I want to help any way I can!
Thanks for your response. Does your husband battle fluid in his legs, shortness of breath and abdominal fluid?
He does have shortness of breath. He can't out to our garage without getting winded. The chronic diarrhea has been getting rid of the extra fluid in his system so he doesn't have much fluid retention. He has had edema in his legs a time or two and the circulation stockings seem to help.
The thickening of his heart wall was first discovered in 2006 but it was thought to have been caused by uncontrolled high blood pressure when he was in his twenties. Each year, the cardiologist would just sit and stare at his echogram. He knew there had to be something else.
The chronic diarrhea started during the summer of 2012 and by the end of the year, he had lost 40 pounds. That's what made him finally seek medical attention.
Do you know your Pro BnP number? It's a blood test that is used to measure bio-markers in the heart. Normal is <53. Granted, he only has had this measured every 4-6 weeks since the beginning of May but it was as high as 8993, that was the day before his heart stopped the second time. As of last week, it is down to 4233. The amyloid cardiologist that is following him was very happy to see this improving.
I had IV velcade/dex before my SCT and didn’t have any problems, kept working full time. I was having a lot of abdominal bloating and felt bad from that but the chemo didn’t make me feel any worse. I’m on Revlimid/dex now and don’t have any side effects. Not sure how things would change when they’re all combined but I was fine with them separately.
Hi, this is Joanne. I was diagnosed in December 2012. I was on CyBorD until August.(the Bor is Velcade) My light chain went down slowly from 34 to 21 but then seemed to stop working. I go to Mayo Clinic and they decided to try Melform/Dex, which did not good at all. Now they want to put me on Relivemed/Dex (no velcade), but are waiting a week to get my platelets back up. My main problems re kidney and heart. I get very out of breath with walking just out to the car. It is worse if I am carrying something. When I was on the Velcade/Cy/Pro. I never had any side effects that were bothersome. I took loparamide if I occasionaly got diahrrea. and lorazapam if I felt at all sick. That kept it under control and I found my life style didn't change at all. The breathlessness if quite annoying. I cannot climb even one set of stairs without stopping midway. I know it is because my heart is not filling with enough blood to sustain any exertion. I am 74 year old female who was always healthy, never even had so much as a cold that I can remember. This disease really hit me by surprise.