1. < Blood Cancers & Disorders

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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hthree | @hthree | Dec 31, 2022
In reply to @user_ch3a1e07f "Hello 1nan, I too have MM. I was diagnosed with MGUS in 2007 and also did..." + (show)
@user_ch3a1e07f

Hello 1nan, I too have MM. I was diagnosed with MGUS in 2007 and also did the wait and watch thing until 07/2013 when I
needed to start treatment. You’re fortunate to be doing so well with Velcade, dex and Rev. I didn’t do well with Velcade or Rev.
I then went to Kyprolis and now I’m on Daratumumab, dex and Pomalyst. It’s going well so I’m grateful. I too, have found great
hope and peace in my relationship with God. I can’t imagine going through this without Him.
Thanks for sharing and I wish you the best!
Linda

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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

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hthree | @hthree | Dec 31, 2022
In reply to @mamaellie "Can I ask why he needs meat? Is it for the protein? I read many books..." + (show)
@mamaellie

Can I ask why he needs meat? Is it for the protein?

I read many books on good eating for cancer patients and then went to books on healthy eating for heart patients.
Everyone resulted with PLANT BASED eating. I took from the readings what I found palatable. For every new food I added, I removed one bad food, It took a month before I made a complete overhaul of my eating patterns.

I eat a can of sardines each morning = 23-25 grams of protein.( p.s. not packed in water but oil) Yuck to sardines? Go for a small can of tuna or salmon. Super protein kick starter for the day. seeds, nuts and beans are loaded with protein,also.

Greek yogurt has 12-15 grams of protein. Mix in fruits of choice, etc. Check the protein count on the label.

I eat chia, flax and hemp and sprinkled into almost everything I eat daily, including salads, soups, guacamole dip. Almost everything .

Quinoa and Ferro are a wonderful substitute for rice.

HEALTHY fats are great. I eat at least 3 avacados a week. Either in a salad or as a guacamole dip or right from its shell/skin.

Bottom line, I lost 30 pounds the first 3 months and had no idea how. All I knew I was changing my eating lifestyle for my health. I was stuffing myself like a piggy and was never hungry. And yet the weight was falling off. It is the combination of all these foods. All those seeds ‘beating’ each other up internally. And this was without exercise.

Further get rid of the carbs. I eliminated all breads and pasta. I eat sprouted bread made by Ezekial . I eat Lundberg rice cakes as a substitute for crackers..

To date I am down 49 pounds and have kept it off for 2 1/2 years. It works.

I also found that changing my eating lifestyle was something where I had complete control. .

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@ 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!

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tristram | @tristram | Dec 24, 2022

Thanks for he information, Ginger. I just registered as well.

Tristram

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 23, 2022

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

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taminni | @taminni | Dec 21, 2022

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.

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1 reply
tristram | @tristram | Dec 14, 2022

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

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Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 14, 2022
In reply to @tristram "John, I've been conducting research since my initial diagnosis in early November. I bring as baggage..." + (show)
@tristram

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.

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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?
Ginger

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tristram | @tristram | Dec 14, 2022

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.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 13, 2022

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?

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ripley | @ripley | Dec 4, 2022
In reply to @gingerw "@ripley If possible, get a referral to a hematologist for full testing. As you might know,..." + (show)
@gingerw

@ripley If possible, get a referral to a hematologist for full testing. As you might know, multiple myeloma starts out in lesser stages of MGUS and Smoldering Multiple Myeloma [SMM]. Based on test results, they might do a bone marrow biopsy, or adopt a wait-and-see approach with repeat testing every six months or so. Having family members with MM already, you should be making sure your medical team is aware of that, and that gives you added incentive to be mindful.

I indeed had symptoms similar to you, but it was due to other health issues. Chronic kidney disease and fibromyalgia had a lot to do with some of my symptoms being called out for one condition, that in reality was something else. Funny how the body is like that.

Will you check into getting to a hematologist and let me know what you find out?
Ginger

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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.

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