Multiple Myeloma: Come introduce yourself and let's talk

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

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.

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.

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!

So glad your therapy is working!
🙏 for remission

Wish you all the very best white pine!!

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?

Hello mehz4802
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.
Mitten1

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.

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.