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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I was diagnosed with active myeloma 31 years ago, and lessons we learned and strategies are in 4 minute YouTube videos. Search YouTube 30 year myeloma survivor, patient 007. The first few episodes may be most helpful as you begin your myeloma experiences.
Welcome @dick12, I moved your post about being newly diagnosed with multiple myeloma to this existing discussion that you'll find here:
– Multiple Myeloma Come introduce yourself? https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/
I did this to help you connect with the many other members living with multiple myeloma like @gingerw @nadineelissa @whitepine66 @mitten @psue4 @tristram @taminni @hthree and more – some of whom have been recently diagnosed like yourself and others who have had MM for years.
What type of chemo drug will you be starting? Do you have questions about starting chemo?
just diagnosed with Multiple myeloma. Start chemo injections soon
start MM injections next week. Looking for any ideas as coping with new disease. Found in lower back pelvic area and in chest sternum etc.
Lots of prevention medication to take etc.
As male 81 with many other issues. Heart arthritis etc.
She is doing okay. She just had her 3rd infusion and she is able to control the nausea with meds but is very tired and dizzy for a few days after treatment and has some brain fog. Compared to Revlimid and another treatment this is doable, especially when she soon goes to every other week for her infusions. Her veins are a problem for the IV and she will be getting a port this week.
Hi @nadineelissa, how is you mom doing on Isatuximab?
I was diagnosed with stage 3 myeloma 31 years ago and visited Mayo 3 times for 2nd opinions between home town treatments. Our lessons learned and strategies are in 4 minute YouTube videos. Search 30 year myeloma survivor patient 007 to view.
Since myeloma can be deadly, I would consider going wherever I could to see an oncologist with myeloma experience. The International Mueloma Foundation may be able to help, or the American Cancer Society. Both are great and have good sited.
It helped us 31 years ago when I was diagnosed with stage 3 myeloma to learn as much as we could. Our lessons learned and strategies are in 4 minute YouTube videos. Search myeloma 30 year survivor patient 007 to view.
Your story is similar to my daughter's. High blood pressure, started this whole chain of illness. Now taking 3 chemo meds to stay on top of MM. It's a long story and I only wished I could afford to get her to a Mayo Clinic. Right now she is doing okay and dealing with it the best way she can. She believes it will lead to kidney failure. Our faith is in the hands of God.
My questions is: has anyone turned away from the medical treatment and referred to holistic or natural meds for treatments? Thank you!
Ginger is always great to ask any questions.
You sure can do more. If you have been officially diagnosed with MM there should be a plan of treatment in place by your oncologist. MM is a blood cancer as we all know it. I am not sure why your oncologist isn't treating it? If I may…something I found has been helpful in advocating for myself and keeping my oncologist on their toes is I review my labs and anything I find out of place, I ask about it. I also research Google Scholar (not google itself) and read journals and Articles posted by doctors regarding my condition, then I discuss my concerns and/or questions with my oncologist. Example, in less than 3 years of diagnosis of MGUS through a second bone marrow, I am now classified as Smouldering MM. I posed questions to oncologists on things they did not review in the first BMB. They could not give me an answer and then ordered a second BMB. Doctors are humans and can miss things as well, which is what happened in my case. Thus we have to be advocates of our own health. Had a CT scan in January of this year- identifying 1 leison. Last year, I kept telling my doctor I'm sluggish and really tired. Her response was maybe I just need to work out, etc. Well let's see…I have a very physical job running a small daycare/preschool business. Needless to say the second BMB results revealed anemia. Both oncologists are now suggesting I do drug therapy or clinical trials to slow progression down. Advocating for yourself and research on your health is vital. Hope that helps.