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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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
@ 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!
Thanks for he information, Ginger. I just registered as well.
Tristram
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!
https://connect.mayoclinic.org/event/myeloma-and-you-a-day-for-patients-and-caregivers-2023/
I'm going to register today!
Ginger
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.
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
@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?
Ginger
John,
I've been conducting research since my initial diagnosis in early November. I bring as baggage into the treatment process three childhood bouts of GBS which left me partially handicapped, so any treatment that causes potential nerve damage gives me pause, and several of the treatments for MM seem to cause nerve damage, but I haven't found a clear description of what exactly "cause nerve damage" means in this context. I realize this may be a "pick your poison" process, but I want as much clear info as possible before I do my picking. I meet with an MM specialist Jan. 5.
Hello @tristram, Welcome to Connect. I saw your post in the GBS (Guillain-Barre Syndrome) discussion and I thought I would respond here in the Multiple Myeloma: Come introduce yourself and let's talk:
https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/ so that you could meet other members with Multiple Myeloma and learn what they have shared.
Here's some information I found that includes treatments and meds given for multiple myeloma and their side effects.
— Patient education: Multiple myeloma treatment (Beyond the Basics)
https://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics
Have you done any research on the treatments available?
I recently had more blood work done including Basic Metabolic Panel, CBC, Ionized Calcium and Serum Protein. Everything was normal except for the ionized calcium which was 1/2 mg above the normal range. My regular calcium was within the normal range, but on the high end. My main symptoms are muscle pain, sometimes severe, and insomnia that started 5 days after I got Covid in late January 2022. The muscle pain was bad for 2 months after Covid, then got a lot better until a few weeks ago when it started again. I am wondering if I either have Long Covid or Fibromyalgia, which Drs haven't diagnosed because there's no definitive tests for those conditions, or my symptoms could be related to my poor sleep. Thank you for your concern and advice.