Multiple Myeloma: Come introduce yourself and let's talk

@blessing19 There is the Mayo Care Network, that may be able to assist in getting a teleconference set up.
https://www.mayoclinic.org/about-mayo-clinic/care-network?_ga=2.34954598.654940538.1576082880-26666207.1559161564
March is a long time to wait for information, isn't it? I hope you will let us know if you have any success connecting via the Care Network.
Ginger

Hi! First, I hope you are having a happy time of celebrating the season holiday. To us it is Merry Christmas.
As for onset of treatment, the every 3 month check of labs made the decision. My Mayo doctor said that when the M Spike reached 3.2 he would start treatment. Over the years I just dealt with whatever health issues surfaced and didn't worry about MM. My position was that I refused to be held hostage by fear, especially fear of something that might never happen. Routine was get labs, see local oncologist/hematoligist, put MM on "back burner" and keep living life. We made annual trips to Mayo, our "vacations"! When benchmark was hit my response was, "Ok, let's do this". And my 2 doctors started working together. So glad I didn't waste the beautiful 12 years with worry. Does this help?

Thank you! How does the Care Network work? I can’t see any hospital in Australia though.

Thank you Nancy for your kind reply. What is your myeloma type? My mum’s blood test can not identify an M spike, so I guess we can not use that as a benchmark. How did your treatment go? Are you in CR now?

Hi again. I started my first treatment for Kappa MM in June 2016 at age 75. Since then I have been on 5 more protocols. As they stopped being effective, as all eventually do, my local doctor consulted with Mayo doctor and we moved forward. There are so many new treatments for blood cancers that there is reason for high hopes for all of us! You may laugh but I love change. Every change was welcome. Bottom line, all have helped much in the way of managing a chronic disease. You ask if I am in remission. The answer is yes, but the way I got there was pretty much divine. This fall I had 2 major emergency surgeries in 8 days. On learning what was ahead I asked God to take care of all things cancer because I would have my hands full with all things spinal and neurological. Two months later, after no treatment and unimaginable stress, it was time to get labs and restart treatments. We got a Christmas miracle. Against all things reasonable I was in full remission. No myeloma cells in blood or urine. So now we are back to the Mayo plan to ease into maintenance. Please know that there is always a treatment option available these days. Is your mom understanding MM in the way you are, sharing in conversation together what you learn?
Nancy

@blessing19 I see there is a ;ink to send them an email. Due to the time difference, you could send them an email and ask if they can help you. There is also a phone number, but I imagine the cost of a phone call right now might be quite a bit. You might also check with Mayo if they have any Mayo Clinic trained doctors now practicing in your corner of the world. That is how i was able to be connected with Mayo Clinic, as I live in a rural area. I travel 115 miles each way to my oncologist, who came from Mayo Clinic!
Ginger

Hi again. I started my first treatment for Kappa MM in June 2016 at age 75. Since then I have been on 5 more protocols. As they stopped being effective, as all eventually do, my local doctor consulted with Mayo doctor and we moved forward. There are so many new treatments for blood cancers that there is reason for high hopes for all of us! You may laugh but I love change. Every change was welcome. Bottom line, all have helped much in the way of managing a chronic disease. You ask if I am in remission. The answer is yes, but the way I got there was pretty much divine. This fall I had 2 major emergency surgeries in 8 days. On learning what was ahead I asked God to take care of all things cancer because I would have my hands full with all things spinal and neurological. Two months later, after no treatment and unimaginable stress, it was time to get labs and restart treatments. We got a Christmas miracle. Against all things reasonable I was in full remission. No myeloma cells in blood or urine. So now we are back to the Mayo plan to ease into maintenance. Please know that there is always a treatment option available these days. Is your mom understanding MM in the way you are, sharing in conversation together what you learn?
Nancy

I suggest a different doctor. Get to the MAYO Clinic, or MDAnderson Houston. There's not that many centers that can do a stem cell transplant and they are usually connected to a university medical center. My husband had a stem cell transplant to gain maybe 10 years of life. The next step is a T Cell procedure that is just this year approved by FDA. Don't mess around with MM. The difference between our original cancer doctor and MDAnderson is like night and day. Social services helped us with discounted apt. rates, cash and emotional support. We were there 2 months. He's 2 years out and so far so good. Blood draws monthly, bone shot in stomach monthly but he'll do that much. Prayers.

Hello All

A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the disease progression. I was wondering if any of you had any early symptoms of this disease before the diagnosis came about. After looking at this video will you share your experience of being diagnosed?