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jan52241
@jan52241

Posts: 10
Joined: May 22, 2016

Current diagnosis is Amyloidosis and multiple myeloma

Posted by @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.

REPLY

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.

Hi Jan, I was diagnosed a year ago with multiple mylenoma. After radiation and chemo I am now in remission, the only downfall is I developed neuropathy in my left leg and fingers along with both feet. I am on a drug called lyrica which seems to help, I have no pain just numbness which makes me very careful when I walk. As I

Hi Jan, I was diagnosed with multiple mylenoma a year ago. I have developed neuropathy in my left leg, Han

Hi Jan, I was diagnosed a year ago with multiple mylenoma! Since then I have gotten neuropathy in my left leg , both feet and fingers on my left hand. They have prescribed lyrica to help and it does to a point, so I guess you could ask about that drug. I hope this will help.

Hello Jan,

I had a successful SCT at Mayo in Feb., ’12 and I am living a fairly normal life. I was lucky to have very little organ involvement but I did suffer from nerve pain so much that I was up to 50 mg of OxyContin twice a day and another 3-4 10 mg oxycodone for break through pain. Needless to say, I was in the fetal position in pain without the narcotics. Lyrica was and is a miracle drug for me. I was able to reduce the oxy by 80%. After the SCT I was eventually able to get off the narcotics completely. After a few years I was still feeling pretty lethargic from the Lyrica and I am now only taking 75 mg 2 to 3 times per day with the help of a very low dose of 50 mg of tramadol once a day.

Good Luck and know that there are a lot of good stories coming out of the Amy / MM clinics around the country and especially from the Mayo.

Pete Cannon
Seattle

@user_ch1df4426

Hi Jan, I was diagnosed a year ago with multiple mylenoma. After radiation and chemo I am now in remission, the only downfall is I developed neuropathy in my left leg and fingers along with both feet. I am on a drug called lyrica which seems to help, I have no pain just numbness which makes me very careful when I walk. As I

Hi Jan, I was diagnosed with multiple mylenoma a year ago. I have developed neuropathy in my left leg, Han

Hi Jan, I was diagnosed a year ago with multiple mylenoma! Since then I have gotten neuropathy in my left leg , both feet and fingers on my left hand. They have prescribed lyrica to help and it does to a point, so I guess you could ask about that drug. I hope this will help.

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I had neuropathy in my left foot/toes and terrible nerve pain. The mm and amyloidosis were diagnosed by a chance blood test for my neuropathy. How were you diagnosed and how long after did they start chemo? I go every three months for a full body MRI and a full blood panel. My next appointment they will do a blood panel and an MRI on my upper arms. The I will get a bone marrow aspiration to check on my plasma cells. I would like to hear more of your story so I will be prepared at my next visit. Thank you for your info.

Forgive my ignorance, but what is SCT? Hope you are doing well.

What were your symptoms leading up to diagnosis?

@jan52241

Forgive my ignorance, but what is SCT? Hope you are doing well.

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SCT = stem cell transplant

@debdeb

What were your symptoms leading up to diagnosis?

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I had no symptoms. It was discovered in a blood test for neurological
issues. I am in the smoldering stage at the moment.

Liked by Debdeb

@debdeb

What were your symptoms leading up to diagnosis?

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I was just dx a week ago through BMB and fat aspirate, but they have elected to go with the watch and wait approach. No decisions for at least 3 months. This wait is really causing anxiety. I am also a smolderer without symptoms. The DX was made due to finding I carry a germline gene that is linked to amyloidosis and we tested just to make sure I “didn’t” have it. Trying to educate myself now.

@debdeb

What were your symptoms leading up to diagnosis?

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Welcome to Connect, @jilljohnson61401
I think the watch and wait approach causes anxiety for many. It feels like doing nothing. In actual fact, your medical team is not inactive, but rather actively monitoring you. I prefer the term “active surveillance” rather than “no effort”.

Here’s how the National Cancer Institute defines active surveillance: “Closely watching a patient’s condition but not giving treatment unless symptoms appear or change. Watchful waiting is sometimes used in conditions that progress slowly. It is also used when the risks of treatment are greater than the possible benefits. During watchful waiting, patients may be given certain tests and exams. It is a type of expectant management.”

Good for you for educating yourself. Please ask questions. We’ve got an experienced and knowledgeable group here to share with.

I’m bringing @jan52241 @debdeb @user_ch1df4426 @gaetanche and @tmousetis into the discussion.

Jill, is your next appointment in 3 months?

@debdeb

What were your symptoms leading up to diagnosis?

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Yes in three months. I will get my blood drawn in Illinois and sent to Mayo. My Dr will call to discuss. I usually email him questions about a week before so he can address them during the call. Reading lots and asking questions so I can put my list together. I was just feeling good about my SMM and thinking “hey, this may never progress” and then get a Dx of Al Amy. Starting the whole “process of info” all over again. Such a roller coaster

@debdeb

What were your symptoms leading up to diagnosis?

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BTW…I love the “active surveillance” perspective.

@debdeb

What were your symptoms leading up to diagnosis?

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Jill, you sound very organized. Have you read this discussion thread about “the binder”? http://mayocl.in/2sNipEf Members offer how they got organized when facing a new diagnosis.

I’m also tagging @caretothepeople. We haven’t heard from her for a while, but she always seems to find great resources for preparing questions.
Jill, it sounds like you have a great doctor. I like that s/he will review your questions in advance of your appointment.

@debdeb

What were your symptoms leading up to diagnosis?

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Jill6, The first bit of time after such a DX is rough. There are many frightening aspects, and not much to relieve the worry. That is why boards like this exist. It is a place where you can raise issues, complain, whatever, and everyone else must either answer in a supportive way or keep their mouths shut. I go through this now with all my cancers and disorders (prostate, bladder, stomach, esophageal, brain cortex, larynx, heart, lung, kidneys, liver, spleen, joints, thyroid, edema, skin, eyes, etc., etc.). I have a natural fear of people getting bored of my complaints and questions, but you folks who don’t want to read my crap, they can skip to the next. Even go to @colleenyoung‘s posts, which are much more informative and supportive than anything I can say. But remember, we are all in this together for the rest of our lives. By the side, probably the best book available is “Amyloidosis – Care and Treatment” by Morie Gertz and the staff at Mayo Rochester, and other folks. And the Grand Rounds Videos from Mayo, especially Martha Grogan and Dr. Gertz, and Dr. Comenzo of Sloan Kettering, are terrific.
My wife was told, in November of 1989, at about 10:00 p.m., that I would probably not live through the night. And she has been told the same thing on about 10 other occasions. So take that, Amy…. and CanCan……and Diablo….and MuMi…

@debdeb

What were your symptoms leading up to diagnosis?

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Thanks for the reminder about videos, @oldkarl! There’s a video with Martha Grogan, MD, and hematologist Prashant Kapoor, MD, right here on Connect. Jill, please see:

Video Q&A Amyloidosis – What Patients Need to Know https://connect.mayoclinic.org/webinar/amyloidosis-what-patients-need-to-know/

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