Multiple Myeloma: Come introduce yourself and let's talk
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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@tristram Let me echo the welcome to Mayo Clinic Connect that @johnbishop extended!
As you do your research, more than likely you will see there can be multiple approaches to treatment for MM. Having co-morbidities will no doubt play into the way your team handles your situation, and since you are part of that team, making sure you understand what is to come, is critical. In my case, the big co-condition is my kidney issues, so treatment has been tailored around that concern.
Your doctor may well decide to do a careful watch-wait-monitor if your numbers are not extreme, in order to not overtax your system. I attend two different online support groups for MM, including the one from Mayo Clinic https://connect.mayoclinic.org/event/multiple-myeloma-sharing-sessions-15/ and find we all have similar but often slightly different paths.
What can I help you with today?
Thanks for the note, Ginger. Right now I'm just reading and gathering info and waiting for Jan. 5 when I meet with a doctor. Tristram
Please be your own advocate. If you want more answers get a second opinion from another oncologist, preferably one at another clinic or with a specialty in hematology which I have been blessed to have been referred to.
Did you know there is an education day coming up on January 8th? It runs from 8-3 Eastern Time, and is online!
Here is a link to find out more, see the agenda, and register!
I'm going to register today!
Thanks for he information, Ginger. I just registered as well.
@ mamallie. I have MM, for 17.5 years now.and new to this Mayo Forum. I am also a certified nutritional clinician. I am very impressed with how you have developed a very healthy diet. Your ideas are founded in good principles.
Hi quality fish protein which have been shown to contain healthy Omega 3 oils
Low refined carbs intake. And you have
also included excellent monounsaturated fats with Avocado and certain nuts. (Keep walnuts and pecans in refrigerator..as they go rancid quickly)
Many people will benefit by your dietary regimen. Bravo!
Hi Linda. Your post is from 2016. It's been awhile and I would love to know how you e been doing. What has or has not worked for you.
I'm a long time survivor and running low on options. Thank you
Hello! I'm a Finnish 52 years old woman, who has MGUS diagnos, too much IgA, too little IgM and IgG. I've got this over 10 years. I'm not typical patient, because I've really blond skin, not a man and haven't got any other things from countrysides work or so. I've got mold toxin since 1980 from my school buildings. My only treatment is the blood tests once a year. I'm not satisfied with that, because many time I've noticed, that the doctors and nurses don't know anything about that. During this pandemic, I've been working with kids who has many viruses with them. I've got the first antibiotics last December to sinuses for three years, although there is information my treatment when some infection has found, but here in Finland they gave treatment only for C-19, but I didn't get it either. Now I have 5 vaccinations and had 1 C-19 in last May, but still feeling bad. I've many other diseases too, astma, allergies, Hypothyroidism, lack of B12, D25. But with MGUS, the life is like a joke, they really don't know what to do with that, and can't advice what is the markers with body, when I have to concern about, how can I notice if the situation is going worse. Have a better year 2023 and keep smiling with all our problems!
Maybe you should see a mm specialist.
I am checked quarterly to monitor my MGUS and see a hematologist/oncologist who specializes in multiple myeloma. A treatment provider who is specialized is important because, as you noted, the generalists are not well-trained in this area.
Although your MGUS may never advance to Smoldering or full tilt Multiple Myeloma, if it does, you want the optimal benefit of treatment, should it become necessary. Early intervention is best.
Best of luck. Let us know.