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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

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

Tristram

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@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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@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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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!

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Maybe you should see a mm specialist.

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@sussu

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!

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Greetings!
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.
Patty

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