Multiple Myeloma: Come introduce yourself and let's talk

Posted by MZ @mehz4802, Jul 27, 2016

I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he's not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.

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Justin McClanahan, Moderator | @JustinMcClanahan | Jun 28, 2019

Hello members of the multiple myeloma discussion. As I am sure many of you have already met and discussed with @1nan, I thought I would share her member spotlight with you so you could get to know her a bit more in a different way, https://connect.mayoclinic.org/page/about-connect/newsfeed-post/thinking-smart-not-scared-meet-1nan/.

Nancy, Alumna Mentor | @1nan | Jun 28, 2019

In reply to @JustinMcClanahan "Hello members of the multiple myeloma discussion. As I am sure many of you have already..." + (show)

Thank you Justin. There are pretty wonderful folks in this group. It has been my pleasure to get to know them.

Ginger, Volunteer Mentor | @gingerw | Jul 11, 2019

My MGUS may have become active MM. Results of latest bloodwork indicate something has gone awry [sp?] Protein levels through the roof after being above normal for a long time. Pet-CT scan scheduled 7/23, and possible bone marrow biopsy again. My nephrologist and hematologist oncologist are on top of it all. Couldn't come at a worse time. I move 700 miles away I. 3 weeks.
Ginger

Chris, Volunteer Mentor | @auntieoakley | Jul 11, 2019

In reply to @gingerw "My MGUS may have become active MM. Results of latest bloodwork indicate something has gone awry..." + (show)

Ginger, I know we have chatted before, but there is a Mayo trained and used to be a regular Mayo doctor just two hours from your new home. It is worth the drive to get great care.

Ginger, Volunteer Mentor | @gingerw | Jul 11, 2019

In reply to @auntieoakley "Ginger, I know we have chatted before, but there is a Mayo trained and used to..." + (show)

@auntioakley Yes, I wrote his name down and will be contacting him tomorrow or Monday, to see if he will take me on as a patient. My current h-o was surprised but pleased I had already been thinking ahead. Now to get a nephrologist and internist who will work with Dr. Yasenchek.
Ginger

maxwell123 | @maxwell123 | Jul 15, 2019

I'm new here but not new to blood disease/cancer. I was diagnosed with Mantle Cell Lymphoma in February 2014 (rare). One of my new jobs is keeping myself alive and learning all that I can about my disease. There are certainly many resources on the internet for information. Just learn to distinguish between the charlatans and the real deals. First, in the world of blood cancers, there is something called "Watch & Wait." I don't know the details of MM but I suspect the same is true for MM if you have an indolent version. W&W is not uncommon and can be an excellent form of therapy for many. It keeps you away from treatment, which in some cases may be harsh and does not put you in any danger. Second, someone mentioned a second opinion. I assume your doctor is at Mayo, which is excellent. I have a kidney condition. That is why I came to Mayo. For my lymphoma, though, I go to the #1 rated adult cancer center in the country -- MD Anderson. It would be a great place to seek a second opinion. I am treated in a local center for my lymphoma at the direction of MD Anderson. Trust me, having a second opinion from a top institution will likely help put your mind at ease. Knowledge is power!

cctoo. Catherine Crowley | @cctoo | Aug 13, 2019

I had test that showed m spike 1.1....does it always mean multiple myeloma cancer? Go to hematopoietic Sept. Had breast cancer in 2016......could this be recurrence?

Ginger, Volunteer Mentor | @gingerw | Aug 13, 2019

In reply to @cctoo "I had test that showed m spike 1.1....does it always mean multiple myeloma cancer? Go to..." + (show)

@cctoo I would wait to see what your doctor says, as they compile all the results and form an opinion. Please come back and let us know what they say, will you?
Ginger

Chris, Volunteer Mentor | @auntieoakley | Aug 13, 2019

In reply to @cctoo "I had test that showed m spike 1.1....does it always mean multiple myeloma cancer? Go to..." + (show)

I cannot answer that question, but I can tell you that is a pretty low number. This means it is not very advanced. There will more answers with more information. Please feel free to call on us as those answers come in. Multiple myeloma has a lot of variables, and there will be some recommendations that are specific to your disease. This can be a hard time waiting for answers. I will be thinking about you.

cctoo. Catherine Crowley | @cctoo | Aug 13, 2019

In reply to @auntieoakley "I cannot answer that question, but I can tell you that is a pretty low number...." + (show)

Thank you.....if m spike is detected could it disappear? Am having more tests Sept 4th...blood tests. Could it be mgus?

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