Finish Velcade (24 shots) on March 19. Did not work. Being switched to
Revlimid. Anybody done this? Results.
Getting 2nd opinion from Dr. Tuchman at Duke on April 7.
Hi golfer,
I did not have to do this as Velcade did work for me. But, when I was first diagnosed, my doctor told me that Revlimid was another option for me. So, I do know that it is a recommended treatment for amyloidosis. Please let us know what you find out. We are here to listen.
Thanks - reassuring.
DBT said:
Hi golfer,
I did not have to do this as Velcade did work for me. But, when I was first diagnosed, my doctor told me that Revlimid was another option for me. So, I do know that it is a recommended treatment for amyloidosis. Please let us know what you find out. We are here to listen.
Please let me know how things go.
DBT said:
Please let me know how things go.
Will do. Thanks
DBT said:Please let me know how things go.
Yes. I had been through almost two years of Revlimid ( dosing up to 15mg/day ) with a shot of Velcade every week, with 20-40mg Dex/week. Got my light chains from 28 down to 13. Stem cell transplant didn’t work for me. Also did CyBorD for four months with some lowering of light chains. Also did Carfilzomib clinical trial at Stanford, with good results, but terrible side effects and quit after 3 months. Now in 9th cycle of NEOD001 clinical trial at Stanford, keeping my light chains low and my kidney function stable – all with no side effects and only one infusion per month, and this is not chemo. Contact me if you want to discuss. My four year anniversary of heart transplant caused by systemic AL is next month. Never giving up. Paul. ■■■■■■■■■■■■■■■■■■■■■.
Hi Paul,
I am glad to hear about the NEOD001 results. I had a SCT in 2012 and I did get into remission. But, my light chains are climbing and are approaching 10. I am having back surgery next week and as soon as I recover, I am going back to Velcade. I react very well to Velcade--the first round brought me from 41 to 13 and the second round to 7. So, we are going to use it first to, hopefully, know me back down. So far, no organ damage at all. Yes, we can never give up!
Paul,
Thanks for the encouragement - a great success story.
Fits the saying - if at first you do not succeed - keep on trying - most problems have a solution.
golfer
Golfer
golfer said:
Will do. Thanks
DBT said:Please let me know how things go.
Hello Golfer,
First off, welcome to the group. I am the facilitator of the support group meetings held at Duke and was wondering if you were at our recent meeting? I know there was one patient in attendance that is treated at Wake Forest.Your decision to seek a second opinion with Dr. Tuchman is a good one. He and Dr. Saad Usmani in Charlotte have the most experience with this disease in NC. Another advantage to Duke is the fact that they have some active clinical trials. As Paul has already discussed, there are several different treatment options that are available and Dr. Tuchman will be able to determine which one may be best suited to you. If you would like to receive some articles concerning Revlimid and its use with amyloid, send me an email at ■■■■■■■■■■■■■■■■■■■■■ and I will get them out to you in a couple of days. I am flying to Ohio tomorrow for a meeting so it may be Sunday before I have a chance to send them. I can also add you to my mailing list for the support meetings in NC. We are alternating them between Duke and Charlotte about every 6 months. Have you seen the Awareness video about amyloidosis? If not, follow this link where you will find the video and a booklet about the disease: http://www.amyloidosissupport.org/amyloid_aware.html
Paula Schmitt
Hey Hey Paul,
I didn't know you were on this group! Folks I had the pleasure of spending a day with Paul this past December in San Francisco. The Amyloidosis Support Groups had a booth at the American Society of Hematology conference and we invited Paul to come help us in the booth. Let me set the stage here: Downtown San Francisco, 24,000 people attending the conference equals a shortage of parking spaces. Paul had to walk about a mile, on his bionic knee just to get to the Moscone Center, then he had to find us once he got there. He looked amazing when he arrived, no way you would guess that the man has been through everything that he posted. He was the picture of good health and is a shining example of how much things are improving for amyloid patients. And just remember, he had to walk back to his car at the end of the day and then drive home! Just want to say that if you ever need an inspiration, think of Paul. By the way, he was also inducted into the Coast Guard Hall of Heroes in 2013 for his work as a rescue helicopter pilot. Hope you aren't mad at me for bragging on you Paul!
Paula