Multiple Myeloma: Come introduce yourself and let's talk

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!

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

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. .

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.