1. < Blood Cancers & Disorders

Multiple Myeloma: Come introduce yourself and let's talk

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 | @blessing19 | Dec 19, 2019
In reply to @gingerw "@blessing19 There is the Mayo Care Network, that may be able to assist in getting a..." + (show)
@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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1 reply
blessing19 | @blessing19 | Dec 19, 2019
In reply to @1nan "Hi! First, I hope you are having a happy time of celebrating the season holiday. To..." + (show)
@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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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 20, 2019
In reply to @blessing19 "Thank you! How does the Care Network work? I can’t see any hospital in Australia though." + (show)
@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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1 reply
Nancy, Alumna Mentor | @1nan | Dec 20, 2019
In reply to @blessing19 "Thank you Nancy for your kind reply. What is your myeloma type? My mum’s blood test..." + (show)
@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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2 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Dec 21, 2019
In reply to @1nan "Hi again. I started my first treatment for Kappa MM in June 2016 at age 75...." + (show)
@1nan

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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@1nan This is such a wonderfully uplifting post to read! Your spirit comes through in your words, along with the joy. Blessings to you!
Ginger

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gmajudy | @gmajudy | Dec 23, 2019

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.

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1 reply
blessing19 | @blessing19 | Jan 3, 2020
In reply to @gingerw "@blessing19 I see there is a ;ink to send them an email. Due to the time..." + (show)
@gingerw

@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

Jump to this post

Thank you for the information! I will send an email to see if there is any Aussie doctor who is trained in Mayo. I also checked that only 4 myeloma drugs are covered by the Aussie Medicare. There are more options in US. Don’t know if it will cost a lot for overseas patients with no insurance.

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blessing19 | @blessing19 | Jan 3, 2020
In reply to @1nan "Hi again. I started my first treatment for Kappa MM in June 2016 at age 75...." + (show)
@1nan

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

Jump to this post

Happy new year Nancy! And thank you for your kind reply. Sorry to hear that you’ve gone through 2 surgeries and hope you are recovering well. Are these injuries caused by myeloma?
I have done some research and noted that there were 7 medicines used to treat myeloma. Only 4 of them are available here. They are pomalyst, Revlimid, Velcade and kyprolis. Don’t seem like a lot of options there, considering that the docs normally use 3 drugs together?
Also was curious how you went into full remission without treatment? Does your doctor know why?
Hope your myeloma stay in full remission for a long long time.

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blessing19 | @blessing19 | Jan 3, 2020
In reply to @gmajudy "I suggest a different doctor. Get to the MAYO Clinic, or MDAnderson Houston. There's not that..." + (show)
@gmajudy

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.

Jump to this post

I know that there is an age limit to do an SCT? Is it 70 in US? Some patients opt out for SCT. I wonder whether it is very physically challenging to go through it? Like the risks of infection, low blood counts during the process.
Would you know if myeloma specialists from MD Anderson sees patients overseas? Ideally via teleconference?
Prayers for your husband.

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blessing19 | @blessing19 | Jan 3, 2020
In reply to @hopeful33250 "Hello All A Youtube video was recently released by Mayo Clinic regarding Multiple Myeloma and the..." + (show)
@hopeful33250

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?

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Thanks for sharing the video. The doc mentioned 3 lab tests are used to identify high risk SMM. I wonder what are the 3 tests?

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