Current diagnosis is Amyloidosis and multiple myeloma

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."

I love your comment also.

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.

It's a bit disconcerting that these posts are almost a year old. What happened to these people?
Are there no current posts?

Hello @carolynaune, I can understand how looking at older post may be off-putting or concerning. Connect will be undergoing a bit of a makeover to help lay out discussions in a more relevant order. I'd like to tag @oldkarl and @1nan to rejoin the discussion as they have posted more recently than a year ago. @carolynaune, if you don't mind sharing, what questions do you have for the community?

If I can be of any help or support, willing to do so. June will be start of my third year of treatment for Multiple Myeloma. I was diagnosed in 2004. Currently I am hoping to connect with someone being treated with Darzalex. After eight weekly treatments, I just had the second of eight biweekly treatments.

Have not had a definitive answer to what type Amyloidosis I have . Had bone marrow biopsy and fat aspiration. Not good enough I'm told. Need a heart biopsy. Has any one else had this experience?

I would like to discuss your condition with you if you'd like. Have peripheral neuropathy as well as amyloidosis. Doctors are not familiar with Amyloidosis at all., even though I was seen by a hemotologist as well as a cardiologist. Then, at Mayo, learned that I was seeing a nephrologist--but my kidneys function just fine.