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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My mother is a very vital 87 year old and her MM is now active. Had been in smoldering stage for 4 years. She tried Revlimid and another chemo drug (injections in stomach every week) and the side effects were brutal. She just started infusions of Isatuximab. Once a week for 4 weeks, then every other week. Anyone have experience with Isatuximab?

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Wish you all the very best white pine!!

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@whitepine66

Good morning,
I have been diagnosed with Multiple Myeloma and had me first targeted therapy (4 drug). So far so good. The professionals that are helping me have been wonderful and patient.
Now hope for remission!

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So glad your therapy is working!
🙏 for remission

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Good morning,
I have been diagnosed with Multiple Myeloma and had me first targeted therapy (4 drug). So far so good. The professionals that are helping me have been wonderful and patient.
Now hope for remission!

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Hey! Thanks for your answer. They only check my blood tests once a year here in Finland. I live my life as normal as possible. But I still don't know, what are the marks I have to be concern about. It's almost impossible to get a doctor appointment here in Finland after pandemic. And if I get one, nobody knows anything. I have only hope for better.

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@taminni

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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I’m a 31 year stage 3 myeloma survivor, always advocating. 2nd opinions were key to my survival, as my 4 minute YouTube episodes on lessons learned explain. Search patient 007 myeloma to view.

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I just found your web sites and find it quite interesting. Sussu, my mother was born in Denmark, but I don't think this has anything to do with the MGUS. I have just been diagnosed in the last year and I am 92 years old. I think my body is just wearing out. I have had a low RBC and WBC most of my life. and never had any reason to think it was anything more then anemia. Occasionally, platelets run a little low. If I had not developed Trigeminal Neuralgia I probably would have gone to my grave never knowing I had MGUS. I now, see a Hematologist every 3 months (probably a waste of time), and I try to forget all about it. I do have Osteoporosis (very common in 92 year old ladies) and I did fracture a Vertebrae and my shoulder following two separate falls. At this end of the Age Spectrum I doubt very much, that should the MGUS become Smoldering, there is very little they will do about it at my age. It sounds like you are receiving excellent Medical Care. Enjoy, Enjoy, Life is good, and God is watching over you. I have decided, I am not leaving this world until God decides he wants me. This may take quite a long time
GINA 5000

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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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Maybe you should see a mm specialist.

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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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