1. < Blood Cancers & Disorders

I have MGUS

Posted by Lisa54 @lisa54, Jul 2, 2016

I started having health issues when I was a very young gal around 4. I was told at a plasma center when I was 18 I couldn’t donate and I should be the one on the table receiving a donation. The doctor told me to go see an oncologist and I never did. For four years I complained to my primary doctor my symptoms and she finally told me to go see a psychologist. I did as told and they told me to get a different doctor. I did. The new doctor sent me to Roger Maris Cancer Center in Fargo, ND for some tests Sept. 12th, 2012. Within two hours they told me I had MGUS and what to look for as far as symptoms. I went to the doctors every 6 weeks for the first year.(2013) Then I became extremely anemic and hormones way out of wack. Roger Maris did nothing for me. I kept calling the nurse and telling her that I was getting sicker and sicker. Nothing again done. I made an appt with Mayo. Had many tests and stayed for 4 days seeing many doctors. (2014) Now it’s 2016 and I spent 3 weeks in the hospital. I have gone from first stage plasma cells to red blood cells to problems with white cells. Always getting infections. Anyone else out there with MGUS?

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pmm | @pmm | Jan 8 9:51am
In reply to @roseyd "I had extensive back surgery in 9/21 during Covid. After my surgery I was sent to..." + (show)
@roseyd

I had extensive back surgery in 9/21 during Covid. After my surgery I was sent to City of Hope, Medical Ongologist. I have been seeing him every 3 months for labs. I was told it was because some of my blood work was off after surgery. I assumed it was because I had 2 transfusions during surgery. I recently was able to check my documents on line. I knew my iron was low as I was put on meds. I saw a diagnosis of Monoclonal Gamopathy which I was not aware of. I have read a lot of comments and relate to them. I was also diagnosed with CKD 3 which was new. I have known of this diagnosis and am seeing a nephrologist. I now have a lot of concerns-my dad died of lymphoma. From what I’ve learned from this site I should ask for a baseline BMB at the least. I see my GP next week and I will address these concerns with her. I appreciate what I have learned already in this group and will continue to check in.

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Wow I am so sorry that no medical professional had the MGUS discussion with you. That is inexcusable.
For me, having a HEM/ONC doc whom I can trust is essential. I hope you have found one and that he or she is a good communicator. Personally, I have no patience hearing how the watch is made, I just want to know what time it is. I don’t want to feel like I have to research every aspect of this disease and treatment thereof. I want to be able to trust my medical professionals.
The amount of knowledge floating around among the posts is awesome!
Patty

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roseyd | @roseyd | Jan 8 1:53pm
In reply to @gingerw "@roseyd As @colleenyoung mentioned, I have CKD [Chronic Kidney Disease], now Stsge 5 and am on..." + (show)
@gingerw

@roseyd As @colleenyoung mentioned, I have CKD [Chronic Kidney Disease], now Stsge 5 and am on dialysis. Diagnosed with MGUS in 2017, I am an overachiever and have progressed rapidly from MGUS to active multiple myeloma. That runs contrary to what almost everyone else experiences, as far as progression beyond MGUS. The very biggest majority of patients go ffor many years without major progression to the next stage. And as you may have read, MGUS is often found when the medical team is looking at something else!

Making sure your nephrologist, oncologist, and primary care doctors are all in communication with each other is so important! You are the hub of the wheel of care, and they are the spokes. Neither can work well without the other. Take time to write down questions about your particular case, your care plan, and how to be the best patient you can be, before your next appointments. Don't be afraid to ask questions of them!

Is there anything I answer for you? How do you plan to relax this weekend and understand that you need to be able to relax and not let these diagnosis consume your mind!
Ginger

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Ginger -thank you for your response. I am sorry to hear of your progression I am still a bit overwhelmed by the info I’m reading but your post and advice on taking charge of my care has helped so much. It’s a comfort to have found this site and others like you who are willing to share.

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pmm | @pmm | Jan 9 1:18pm
In reply to @hels "Hi i have just been diagnosed with mgus my head is spinning could some one answer..." + (show)
@hels

Hi i have just been diagnosed with mgus my head is spinning could some one answer a few questions i didnt think to ask at time my next blood test is june but i go on holuday in march do i need specialist insurance also do you need to inform your life insurance has anyone had this for years without it progressing thanks in advance x

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You do not have cancer. MGUS is not cancer. Now if it progresses that’s a different thing. Unless you’re filling out an application for life insurance, you do not need to include that information. It’s really none of their business. Life insurance does not exclude. MGUS or even cancer.
When I was first diagnosed, I was very anxious, but over a year later, it’s not something that I even think about too much. I go to the doctor every three months for blood draws, and consultation. Other than that, I’m not impacted on a daily basis.
I’m so sorry that you have the worry of a MGUS diagnosis but in the unlikely event it progresses, multiple myeloma is treatable.
Stay away from Dr Google. He is such a downer.
Find a really good hematologist/oncologist.
Get your blood draws regularly and talk to your doc about the results then live your life.
Patty

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2012can | @2012can | Jan 9 10:48pm
In reply to @hels "Hi i have just been diagnosed with mgus my head is spinning could some one answer..." + (show)
@hels

Hi i have just been diagnosed with mgus my head is spinning could some one answer a few questions i didnt think to ask at time my next blood test is june but i go on holuday in march do i need specialist insurance also do you need to inform your life insurance has anyone had this for years without it progressing thanks in advance x

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I was diagnosed with MGUS in 2014. It remained latent until about 18 months back and two markers, Free Kappa light chain and igM , have escalated. I don't meet the criteria of multiple myeloma and thus no treatment is planned. My situation has been complicated by chronic leukemia and acute promyelocytic leukemia along the way so I have not focused too extensively on the MGUS. I understand you are probably overwhelmed now. I would suggest trying to get in front of a lymphoma oncologist . From what I read, MGUS can remain latent for years but nothing is more assuring than good numbers from semiannual blood tests. Try to educate yourself thru Mayo Connect, Leukemia and Lymphoma Society(www.lls.org). Best of luck.

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