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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@colleenyoung

Hi Angie, I'd like to add my welcome. Are you currently on chemo for multiple myeloma? How does this affect your kidney care?

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On Revlimid only. Kidneys were already not so good when I was Dx because of diabetes. My GFR is 30 and staying the same.

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Don't miss this free online webinar for patients hosted by Mayo Clinic tomorrow, Jan 8, 2022. Learn more here:
– Myeloma and You: A Day for Patients and Caregivers Webinar https://connect.mayoclinic.org/event/myeloma-and-you-a-day-for-patients-and-caregivers-webinar/

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@oldkarl

@lisal64 .. Actually, yours seems to be a rather typical story. The part many folks don't realize is that MM is a branch of the cancer group, so anything under that in the string must be seen as cancer of a particular type. I have MM>Amyloidosis>Gelsolin>and others will eventually be added to the string. The Dental work gives a clue to Gelsolin (Finnish Amyloidosis), and some other stuff. Gelsolin (GSN) attacks the ACTIN web which holds together every cell of the living organism. That means you. I have about 300 other hits in my genome that I know of that are dangerous in some way. Just do not allow yourself to become comfortable with a diagnosis which leaves no room for additional issues. I would suggest you make yourself comfortable with http://www.OMIM.org, http://www.HPO.org, and other National Institutes of Health internet sites. They have a world of technical and non-technical stuff. A good genetics counselor is worth their cost. oldkarl

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Thank you so much for sharing! My dental issues are the reason I still refuse bone strengtheners. I have had no fractures, so far, and take Caltrate now. Of course, lytic lesions are amyloid, I guess. But I always felt like the deep dental cleaning spurred a systemic inflammatory response. And you are right. Since diagnosis, my doctors don't seem interested in checking out any other problems. They make me feel like a lost cause, because I have an incurable cancer. It is frustrating.

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@lisal64

Thank you so much for sharing! My dental issues are the reason I still refuse bone strengtheners. I have had no fractures, so far, and take Caltrate now. Of course, lytic lesions are amyloid, I guess. But I always felt like the deep dental cleaning spurred a systemic inflammatory response. And you are right. Since diagnosis, my doctors don't seem interested in checking out any other problems. They make me feel like a lost cause, because I have an incurable cancer. It is frustrating.

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@lisal64 One problem I have is lazy doctors. These are people who don't know anything about your particular disease and are too lazy to look for the proper testing and treatment. A doctor who is not incredibly curious about the human body should be summarily dismissed from medical practice of any kind. Yours is a very typical case, showing dental issues the doc does not easily recognize. And then you add the fact that you have only a few billion variants to your bucket, and every one of them can, at any time, be part of a problem and shape your life, a lazy doctor is not worth having around. Part of my dental problem is that my mouth upper and lower palate seem to keep trying to erupt new teeth in my jaw. Little bumps keep forming just a short distance from my roots., grow out about 1/16 inch, then fade away after a few years. And all my teeth hurt all the time unless I use Orajel or some brand of sensitive teeth toothpast with painkiller. And my heart ejection fraction, at one time tested at less than 30, is now at 70 because the thickening walls and valves have shrunk the available space for blood to collect for the next pump action. My son's EF is doing the same thing, but much worse. His EF is >70, and has been in the low 20s. Yes, we that that incurable cancer known as myeloma >Amyloidosis>Gelsolin. I also have a gene which attempts to establish polytactyly, (extra fingers, nails, and teeth). I am trying to hitch a ride to Spokane to see the Amy specialists there, but it is not easy because my doc is incredibly lazy and jealous of the way I spend my medicare. oldkarl

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What sparked your doctors to do the bone marrow biopsy. I have abnormal red cells and feel like they should do a bone marrow biopsy, but, they don't seem concerned. It's frustrating.

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