MGUS to myeloma: How can it be detected sooner?

Posted by rayofhope @rayofhope, Apr 7, 2023

My wife attended hospital for 2years having bloods taken checking her protein (MGUS) on her last visit her protein was over 80,took a lumbar puncture and found she had Multiple Myeloma stage 3 ,could the Myeloma not have been found before it got to this stage?

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Hello @rayofhope I love your @name. It’s important to always have hope. Believe me I understand the fear that hits when there is a diagnosis of a blood cancer. I had a very aggressive form of leukemia 4 years ago and now I’m healthy, active and in a durable remission. So don’t ever give up hope with your wife’s new diagnosis.

The earliest stage of myeloma isn’t labeled as a cancer. It’s a benign condition called monoclonal gammopathy of undetermined significance. MGUS. But it can change over time and develop into Multiple Myeloma. Two years isn’t an unreasonable time for this condition to progress. For some people it can take years or maybe even never progress to the point of needing treatment. But each person is different and as cells change, the staging of the disease can change. I’m posting several links you might find helpful that explains Mgus, Smoldering Multiple Myeloma and Multiple Myeloma
This article is from Myeloma.org https://www.myeloma.org/what-are-mgus-smm-mm
Another article from Cancer.gov explains the progression risk of MGUS to MM
https://www.cancer.gov/news-events/cancer-currents-blog/2019/mgus-multiple-myeloma-progression-risk
We have a number of discussions in our Connect Blood Cancer support group with members who have Multiple Myeloma such as @gingerw @pmm
@dick12, @mitten, @whitepine66 and many others. This would be a good place for you to begin sharing in their experiences.

– Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

My suggestion is to not dwell on the past, on wether this could have been diagnosed sooner or not. These conditions can develop quickly as in my case, even though I had been having regular checkups.
Has your wife started any treatments?

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@loribmt

Hello @rayofhope I love your @name. It’s important to always have hope. Believe me I understand the fear that hits when there is a diagnosis of a blood cancer. I had a very aggressive form of leukemia 4 years ago and now I’m healthy, active and in a durable remission. So don’t ever give up hope with your wife’s new diagnosis.

The earliest stage of myeloma isn’t labeled as a cancer. It’s a benign condition called monoclonal gammopathy of undetermined significance. MGUS. But it can change over time and develop into Multiple Myeloma. Two years isn’t an unreasonable time for this condition to progress. For some people it can take years or maybe even never progress to the point of needing treatment. But each person is different and as cells change, the staging of the disease can change. I’m posting several links you might find helpful that explains Mgus, Smoldering Multiple Myeloma and Multiple Myeloma
This article is from Myeloma.org https://www.myeloma.org/what-are-mgus-smm-mm
Another article from Cancer.gov explains the progression risk of MGUS to MM
https://www.cancer.gov/news-events/cancer-currents-blog/2019/mgus-multiple-myeloma-progression-risk
We have a number of discussions in our Connect Blood Cancer support group with members who have Multiple Myeloma such as @gingerw @pmm
@dick12, @mitten, @whitepine66 and many others. This would be a good place for you to begin sharing in their experiences.

– Multiple Myeloma https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

My suggestion is to not dwell on the past, on wether this could have been diagnosed sooner or not. These conditions can develop quickly as in my case, even though I had been having regular checkups.
Has your wife started any treatments?

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Thank you for your reply yes my wife went through all the cemo and stem cell transplant but unfortunately the myeloma was very aggressive and she passed away last May, that’s why I asked if they started the treatment earlier could the outcome have been different?

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@rayofhope

Thank you for your reply yes my wife went through all the cemo and stem cell transplant but unfortunately the myeloma was very aggressive and she passed away last May, that’s why I asked if they started the treatment earlier could the outcome have been different?

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I’m so terribly sorry to hear that your wife passed away. Blood cancers can be so unpredictable. Multiple Myeloma for some patients, even if caught early and treated with a autologous stem cell transplant, can’t assure of a positive outcome.
Each case is unique to the person. Some myelomas can be smoldering or very slow to develop, allowing for medications to intercede in their progress. On the other side of that equation, there are conditions or complications, such as mutations, which make the blood cancer aggressive and even more difficult to treat, no matter how early it was detected.

I’ve lost people from cancer too and we always tend dwell in the 20/20 hindsight of “what if”… and it just robs us of positive times and happy memories. We can’t bring our loved ones back, but we can embrace the wonderful times we celebrated with them and live on for them.
Would you like to tell me a little about your wife? Are there special memories you’d like to share?

REPLY
@loribmt

I’m so terribly sorry to hear that your wife passed away. Blood cancers can be so unpredictable. Multiple Myeloma for some patients, even if caught early and treated with a autologous stem cell transplant, can’t assure of a positive outcome.
Each case is unique to the person. Some myelomas can be smoldering or very slow to develop, allowing for medications to intercede in their progress. On the other side of that equation, there are conditions or complications, such as mutations, which make the blood cancer aggressive and even more difficult to treat, no matter how early it was detected.

I’ve lost people from cancer too and we always tend dwell in the 20/20 hindsight of “what if”… and it just robs us of positive times and happy memories. We can’t bring our loved ones back, but we can embrace the wonderful times we celebrated with them and live on for them.
Would you like to tell me a little about your wife? Are there special memories you’d like to share?

Jump to this post

Unfortunately the last 3 years has been tough, to see a healthy loving wife and mother disappear with the myeloma.You read the sooner they detect cancer the better the chances of survival Thats my original question why leave it until stage 3 before starting treatment .
Myeloma has taken my wife and destroyed mine

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@rayofhope

Unfortunately the last 3 years has been tough, to see a healthy loving wife and mother disappear with the myeloma.You read the sooner they detect cancer the better the chances of survival Thats my original question why leave it until stage 3 before starting treatment .
Myeloma has taken my wife and destroyed mine

Jump to this post

Before I get to the heart of this message, I found some information for you regarding Multiple Myeloma and how difficult it can be to detect early.

Here is an excerpt from the article with a link to the entire site from Cancer.org.

“Can Multiple Myeloma Be Found Early?
It’s difficult to diagnose multiple myeloma early. Often, multiple myeloma causes no symptoms until it reaches an advanced stage. Sometimes, it might cause vague symptoms that at first seem to be caused by other diseases. Sometimes, multiple myeloma is found early when a routine blood test shows an abnormally high amount of protein in the blood.”
https://www.cancer.org/cancer/multiple-myeloma/detection-diagnosis-staging/staging.html
~~
My heart goes out to you for the devastating loss of your wife and for how this has impacted every fiber of your being. Grieving is deeply personal because no one can possibly understand what you are going through. Everything has changed.

If I may, I’d like to give you my story as a leukemia patient…from the same perspective as your wife.
When I was diagnosed with AML my husband was in total shock at the possibility of losing me. He told me that his life would be over if I didn’t survive, that he really wouldn’t want to live either. This was heartbreaking to hear because I love my husband so much and couldn’t imagine this amazing man wanting to die if I did. He is brilliant, funny, full of life and has so much to offer the world. We have an adult daughter who would then be without both parents!

So, while I underwent months of chemo, my husband and I had many discussions about his life if I wasn’t around. We talked about his potential fears, the emptiness death brings, we talked about the loss of companionship, about the changes of dynamics with family and friends…the list was endless. It helped him to know I wanted him to go on! To enjoy life and not take one day for granted. While I was an integral part of his life for 45 years and he would miss me, it’s important to continue to find value in life, to give back, pay it forward, to volunteer or whatever it takes to find meaning.

I never want to be the soul reason for anyone to stay alive! It’s so important to find hope and purpose in the face of loss. And I have the feeling your wife would have felt the same way.

When you’re ready, there is a support group on Connect for loss and grief. I’d encourage you connect with other members who have lost their spouses. It can help to know you’re not alone and that others are experiencing the same depth of loss.
https://connect.mayoclinic.org/group/loss-grief/
https://www.verywellmind.com/coping-with-death-of-spouse-2301016
You mentioned that your wife was also a mother. Are your children living nearby? How are they coping? Do you have other friends and family or church groups for support?

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