Multiple Myeloma: Come introduce yourself and let's talk

Hello @blessing19

Perhaps when she is more recovered from the fracture she can travel and get a second opinion. How old is your mom? Is your mom seeing an oncologist who specializes in this?

@hopeful33250 Thank you for posting this, Theresa. I wonder if there is a transcript of this that I can order somewhere? I was diagnosed with MGUS/low-level non-Hodgkins lymphoma in November 2017. Bloodwork showed an escalation of symptoms in June this year. After repeat bone marrow and kidney biopsies, scans and more lab work, I was handed a diagnosis of smoldering multiple myeloma on Nov 15, about 5 weeks ago. I am on the wait-and-see protocol, especially since there is an underlying ultra-rare kidney disease that we are dealing with also. Each day is a gift, and i would love to find out where my case is on the spectrum for proclivity to advance to active myeloma.
Ginger

Even if she can’t travel to Mayo, I would encourage you to get a second opinion, did they do a scan to see if this is causing holes in her bones. If she was diagnosed because of a fracture, this would be a concern. If there is bone damage occurring this would indicate active disease.

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?

I can certainly understand your wanting to know where you are on the spectrum for this to advance to active myeloma, @gingerw. Regarding a transcript of this video, let's ask @colleenyoung if that is possible and how you would get a copy of it.

Thank you all for all kind replies! My mum is 67,turning 68. I made an appointment with another haematologist, but she is only available in March.

The radiologist somehow thinks the fracture is a result of the fall. No definite bone lesion is seen on skeleton survey. I really want a Mayo specialist to have a look at her blood test results, but sadly they can’t do teleconference. Do you know any good specialist in Mayo? I will try to book an appointment to see a specialist after she is recovered from the fracture.

When you decided to call for your mom's appointment, just tell the appointment clerk about your mom's health and they will schedule her with the appropriate health professional, @blessing19. Here is the information for appointments for people outside of the U.S., https://www.mayoclinic.org/departments-centers/international/appointments

@gingerw and @hopeful33250, you can get the transplant from the YouTube video.
1. Open in YouTube
2. Click [...]
3. Select Open Transcript. Depending on the size of your screen the transcript will open below or beside the video window.
4. Skip to the end of the video and the entire transcript will show.
5. Select all text of the transcript, copy and paste into a text document.

@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