Multiple Myeloma

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.

Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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@auntieoakley

Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

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Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?
Nancy

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@1nan

Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?
Nancy

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I would love to, I am inspired to contribute in any way that I am able and thank you.

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@auntieoakley

I would love to, I am inspired to contribute in any way that I am able and thank you.

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Wonderful. I will look forward to any posts you make. Bet I won't be the only one! Stay well.
Nancy

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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/.

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@JustinMcClanahan

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/.

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

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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

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@gingerw

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

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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.

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@auntieoakley

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.

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@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

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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!

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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?

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@cctoo

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?

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@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

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