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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Thank you so much for your words of understanding and support. I tend to keep my concerns to myself, because although people ask me how I am, they really don’t want to take too much time to have to hear about it. 🙂 I am scared, nervous and positive and optimistic at the same time. Such a mixed bag of emotions with diseases like these. Be well and again thank you for your reply.

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@debdeb

What were your symptoms leading up to diagnosis?

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Thanks for the resource link! I am going to be all over this. It really was the only way to come to terms with my smoldering myeloma. At first everything scared me, but as I got deeper and deeper into the journal literature, I was able to get a feeling of comfort that all is treatable. It is not incurable, it is chronic. Perspective, it is all about perspective.

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@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, “Amyloidosis – Diagnosis and Treatment”, and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals “Red Flag Warnings for hATTR”, and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

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@oldkarl

@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, “Amyloidosis – Diagnosis and Treatment”, and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals “Red Flag Warnings for hATTR”, and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

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Hello @oldkarl,

We do not prohibit members from exchanging information, we just ask that you do it via the private message function. If you, or any other member, would like to share the materials you speak of, we would just encourage you to share how to contact each other and your contact information by private message. This is for member protection of private information from spammers and unwanted solicitations from outside sources.

Dr. Gertz is an extremely highly regarded Mayo Clinic hematologist and considered a pioneer in a lot of areas. I am sure his book has fantastic information!

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@oldkarl

@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, “Amyloidosis – Diagnosis and Treatment”, and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals “Red Flag Warnings for hATTR”, and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

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Still here @oldkarl . Thanks for all of your work, but I have to tell you I get a bit leery opening files from folks I really don’t know. I work at a college and we have received so many trainings regarding viruses and files. I go to Mayo in Sept for more tests. I have a lung test at home in a couple of weeks. If my doctor isn’t overly worried, then I am not too worried. I take this disease seriously, but I do not take it as an automatic death sentence. I am in great health and great hands with my local care team and my Mayo care team, not to mention great support from my family and friends. I think I am one of the few lucky ones that was dx way before any deposition. I will definitely check out table 6 from Dr. Gertz’s book. Thanks again for the heads up.

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@oldkarl

@jilljohnson61401 Are you still on? I am still around, but still impatiently waiting and watching. Mayo, B&W and the other centers make a big deal out of getting the diagnosis as quickly as possible to fill out the treatment windows. Then the (particularly) local docs take their sweet time about doing the testing that will be required. I do not buy that practice for a moment. But in the meantime, there is more that can be done. I have taken the Table 6-1 from of the MA Gertz book, “Amyloidosis – Diagnosis and Treatment”, and adapted and filled it out in my own case, including my own stuff. And I have added the ALNYLAM Pharmaceuticals “Red Flag Warnings for hATTR”, and a few other matters I have picked up from various sources. You could do the same, and it is time consuming and educational. But there is a possibility here. I am willing to make this available to you and anyone else through Dropbox.com as a PDF file, if you want it. I have cut out much of the too-personal stuff. And one of the group leaders must say it is all right to do that before I will go ahead. I think it would be very educational for any form of Amy, and you can adapt everything to your own needs. It is a lot of detail, but it is available if some leader gives the word. Doing it this way uses less board room and protects from viruses. Leaders?

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Sure, Jill. A couple things. It is a pdf file, and it is pretty hard to put a virus in one of those. And Dropbox checks each piece. The book is free; a listing of the symptoms shown by the Mayo staff and ALNYLAM Pharmaceuticals, as well as tracking my own history beside those lists. I have had that site (Dropbox) for a few years, and never had a problem either way. I usually put the address as https://bit.ly/2fhYH0E. I do not know why I forgot the “s” this time.

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I understand every feeling you’re having and relate to the fact hat it’s difficult to find anyone to talk to. I started treatment for amyloidosis/multiple myleloma in January 2015l went into remission for 7 months but my light chains started climbing again and remaining stable but not lowered. I am now on a new treatment and praying it will put me back in remission. I’ve now had 5 treatments with more to come. I stay so tired, no energy and some days feel a little better. I try to think positive! I’m going to Mayo in Jacksonville, FL since we live fairly close, about a 2 hour drive. Wishiing you the bestl Becky Outlaw

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@debdeb

What were your symptoms leading up to diagnosis?

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Hi, Jill and Board. Back again Not much has changed with me. Except that I have discovered a bunch of new stuff about Amy. The bunch of folks in my blood kindred who seem to have some form of Amy is now around 17. Thinking now it may be some form of Wild Type. Since several of us have cerebellar cortex deposits, it seems to be close to Finnish or Icelandic, Cystatin-C or Gelsolin. Since we know our DNA shows this area, it makes sense. My Kappa Light Chain value has dropped a little, but is still 50% over Ref value. Same with proteinuria. Anyway, every day I work on my record a little. https://bit.Ly/1w7j4j8 in Amyloidosis. I have 5 pros telling we what to take and to eat and to do for my diabetes. Each of them tells me something different to do about insulin and food. If I took the exact insulin which the want me to take, it would cost me about $10,000 per month since I am getting very close to the donut hole. So one by one, I am just dropping various kinds of medicines. It is all I can do.

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@debdeb

What were your symptoms leading up to diagnosis?

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@colleenyoung , This is for you, and for many others up the Mayo Ladder, right through Dr. Morey Gertz and higher. In most of the world there are places where the more technically specialized and advanced dX’s and treatments are simply not available. Yet Mayo has advertised it will work with local medicos to make these available wherever possible. The problem I have is finding local docx and labs who WILL gladly work with Mayo. I spent four months at Mayo-AZ last year before I even had an appointment with a haematologist (Mayo’s fault, frankly) and even then all the outcomes were extremely non-sensical. I should have gone to Rochester, and I know it. I am trying to put together the wherewithal to make that trip this year, but it looks like it will not happen, and I do not expect to live another year.What I need is some help finding a system in Western Oregon that WILL work with Mayo-MN. Even the labs will not work with Mayo-AZ. For instance, Mayo-MN said last year that they can not do more typing of my AL without further samples work. OK. But the local labs here can not do the typing because they do not have the “Atom Force Electronic Microscope” required, or even the equipment. So they are not willing to send samples to MN. That would take away their whips to force the legislature to give them more money for expenses, which they actually use only to pay their administrators more outrageous salaries. Anyway, put in some system where I can go to and find personnel and labs who can and will work with Mayo-MN, so I do not have to make another trip of 6,000 miles to say “hello”. PLEASE

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@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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