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Current diagnosis is Amyloidosis and multiple myeloma
Blood Cancers & Disorders | Last Active: Jul 14, 2018 | Replies (51)Comment receiving replies
Has anyone had Velcade injections and Dara infusions n the same day? And if so, by combining these drugs, did they bring light chains down? I was on Velcade but I reached a plateau when they wouldn't go any lower. Then my Dr. changed me to Dara. It worked to bring them down 2 points but after 8 weeks no more. So that's the reason he combined them. Your feedback would very much appreciated. `
Replies to "Has anyone had Velcade injections and Dara infusions n the same day? And if so, by..."
Hi Old Karl. I appreciate your email. First, I am now going to Mayo every other week. But for two years, I was going weekly. Fortunately, we live only 80 miles from Mayo in Jacksonville, FL. So that was and is not a problem for me. I'm trying to remember how long it took for the diagnosis. There were so many tests but I would guess about 3 months. My PCP here is wonderful about working with my Dr. at Mayo. If I can help in any other way, let me know.
becky
Did you intend for your message to go to 1 nan? If so, I will be happy to have discussion with you. Just don't want to jump on someone else's conversation.
Thanks,
Nancy
Do not hesitate to contact me in the future if you want. If a phone conversation would be helpful, send your phone number and I will be more than happy to call you. No one needs to do this alone - especially when you aren't!
Nancy
Yes, I did. Thanks so much.
I love what you wrote "No one needs to do this alone .. especially when you are not."
After a visit to Mayo in MN August 2017. I continued on Velcade and Dex for maintenance. When kappa free light chain numbers started to increase, my local physician and Mayo physician consulted. After confirmation that indeed the progression was a trend, I started Feb. 7 on Daratumumab/Darzalex in combination with Dexamethazone weekly. Yesterday was my second of the first 8 weekly treatments. (Thrilled with no significant side effects today!) I remain totally optimistic that my highly qualified physicians are on this, and there will continue to be options waiting in the wings when necessary. Meanwhile, fatigue is the major effect MM has on my life, in part because of chronic pain. I would encourage all to refuse to be held hostage by fear, surround yourself with positive and faith based friends, and continue to realize a purpose in life. We are not defined by our disease.
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Hi, @fnan. A few simple questions. How often do you have to go the Mayo? How long did it take them to diagnose you? How were you able to get through to your doctor to have her or him work with Mayo? That is my biggest problem at the moment. The closest drs who know anything about Free Light Chains, etc., are 500 miles away, and claim to be too busy to take on new patients.