Current diagnosis is Amyloidosis and multiple myeloma

Posted by jan52241 @jan52241, Jun 12, 2016

I was diagnosed with myeloma quite by chance at a routine neuro appointment a year ago. My current diagnosis is Amyloidosis and multiple myeloma I have no one who understands this condition to talk to. I have peripheral neuropothay on my left leg and toes. I have had every test imaginable in the past year to monitor this condition. I would like some advice and what to expect in the future.

@debdeb

What were your symptoms leading up to diagnosis?

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Hi @oldkarl,
What a frustrating conundrum. It is regrettable that there appears to be lack of willingness on the part of local care providers to coordinate your care with support from Mayo Clinic experts. We have several Connect members with a variety of conditions who have experienced good partnerships between their local provider and Mayo Clinic physicians.

I looked at the Mayo Clinic Care Network, which is the first place I recommend looking for local care providers who work with Mayo Clinic. See the list of members here http://www.mayoclinic.org/about-mayo-clinic/care-network/members Unfortunately, there is an absence of practitioners in western Oregon.

Our appointments office may be able to help you find local providers and diagnostic centers/labs. Please call Mayo Clinic in MN or AZ (your choice). The contact information can be found on this page http://mayocl.in/1mtmR63 If you have already tried this, perhaps you can ask to speak with the oncology or hematology department directly.

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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. `

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@beckyoutlaw1115

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. `

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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.

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@beckyoutlaw1115

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. `

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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

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@kelseydm

Hi @jan52241. Welcome to Connect! I’m sorry to hear you have felt alone in this diagnosis thus far, but so glad that you found our community.

We hosted a webinar last June called “Amyloidosis – What Patients Need to Know” https://connect.mayoclinic.org/discussion/amyloidosis-what-patients-need-to-know. In this webinar Mayo Clinic cardiologist Martha Grogan, MD, and hematologist Prashant Kapoor, MD, provided an overview of amyloidosis, including tests and evaluations, treatment options and how to manage your symptoms.

I’d like to introduce you to @gaetanche @mvpdda and @tmousetis who also have amyloidosis. Hopefully they will join this discussion thread and share their experiences about treatment and managing symptoms.

You may also want to look at this thread on AL Amyloidosis: https://connect.mayoclinic.org/discussion/diagnosed-with-al-amyloidosis-would-like-to-hear-from-someone-about-what/ and this one on neuropathy: https://connect.mayoclinic.org/discussion/neuropathy-pain-in-my-left-foot-and-lower-left-legs/.

In the meantime, can you tell us a bit more about yourself. What, if any, symptoms are you experiencing? What treatments are you trying?

Also, I just wanted to let you know i’m editing the title of the thread to make it more searchable and hopefully get more activity.

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Hi, Kelsey. Just a note to remind you that Martha Grogan, Angelica Dispenzieri and the Mayo crew put out a series of videos on things like this. They call them “Grand Rounds”. They are very well done and helpful. What Patients Need to Know is one of the videos.

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@beckyoutlaw1115

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. `

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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

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@beckyoutlaw1115

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. `

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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

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@beckyoutlaw1115

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. `

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Yes, I did.  Thanks so much.

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@beckyoutlaw1115

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. `

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I love what you wrote “No one needs to do this alone .. especially when you are not.”

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I love your comment also.

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@beckyoutlaw1115

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. `

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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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@debdeb

What were your symptoms leading up to diagnosis?

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

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