Multiple Myeloma

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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@blessing19

She does not have any treatment now. Her K/L ratio is 50. IgA is 22, upper limit is 4. Her blood calcium is borderline. BMB shows 26% of abnormal cells. No other symptoms. Local Doc wants to wait and watch. I really want to get a second opinion at Mayo. But mum can’t travel now due to fracture. We live in Australia.

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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.

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@blessing19

Hi Nancy, my mum was diagnosed SMM. Noticed that your treatment started after 12 years of diagnosis. Would you please tell me why the doctor started treatment after 12years? Thank you

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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?

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@gingerw

@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

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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.

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@hopeful33250

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?

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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.

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@auntieoakley

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.

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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.

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@blessing19

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.

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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

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@hopeful33250

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.

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@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.

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@blessing19

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.

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@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

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@gingerw

@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

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

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@1nan

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?

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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?

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@blessing19

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

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@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

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@blessing19

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?

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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

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