1. < Blood Cancers & Disorders

MGUS: Please, let me know I not alone

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc's and a lot of pain. please let me know that I am not alone. bonne

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dazlin | @dazlin | Mar 25, 2018
In reply to @dazlin "Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of..." + (show)
@dazlin

Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of the dr. I'll go along, since it's just bloodwork. ( I wanted to switch drs) If anything spiked, I feel to find another oncologist. I also emailed them about this nurse accepting my insurance, since, she was taken out of network during my last visit . Took me 6 mos to battle. I now was told to contact billing to inquire whether Mayo covers this visit with her. I'm in a rough place as we speak, losing a beloved dog in Feb. and now, shockingly, a few weeks later, my best boy Maverick, (silver Lab)with bone cancer. SO STRANGE, I'M HERE FOR CANCER, NOW MY DOGS HAVE IT??? So ill make my calls when I can . I'm beside myself. One moment, at a time here. Just wanted you to know, since you took time out for asking. Thank you for asking...Linda

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I'm still taking care of my dog Maverick, with osteosarcoma. It's been 3 weeks since diagnosis...so I'm not planning a thing. I take it day by day. I'll call mayo God willing this week.

REPLY
dazlin | @dazlin | Mar 25, 2018
In reply to @dazlin "Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of..." + (show)
@dazlin

Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of the dr. I'll go along, since it's just bloodwork. ( I wanted to switch drs) If anything spiked, I feel to find another oncologist. I also emailed them about this nurse accepting my insurance, since, she was taken out of network during my last visit . Took me 6 mos to battle. I now was told to contact billing to inquire whether Mayo covers this visit with her. I'm in a rough place as we speak, losing a beloved dog in Feb. and now, shockingly, a few weeks later, my best boy Maverick, (silver Lab)with bone cancer. SO STRANGE, I'M HERE FOR CANCER, NOW MY DOGS HAVE IT??? So ill make my calls when I can . I'm beside myself. One moment, at a time here. Just wanted you to know, since you took time out for asking. Thank you for asking...Linda

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Travelgirl, so sorry about your dog...its the worst feeling. Maverick is a silver lab, big boy...was over 100lbs. He lost some weight, but it's ok because his leg can fracture from the mass, so less weight is helpful. I'm cooking special for him, along with his healthy dog food. Take care.

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dazlin | @dazlin | Mar 25, 2018
In reply to @dazlin "Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of..." + (show)
@dazlin

Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of the dr. I'll go along, since it's just bloodwork. ( I wanted to switch drs) If anything spiked, I feel to find another oncologist. I also emailed them about this nurse accepting my insurance, since, she was taken out of network during my last visit . Took me 6 mos to battle. I now was told to contact billing to inquire whether Mayo covers this visit with her. I'm in a rough place as we speak, losing a beloved dog in Feb. and now, shockingly, a few weeks later, my best boy Maverick, (silver Lab)with bone cancer. SO STRANGE, I'M HERE FOR CANCER, NOW MY DOGS HAVE IT??? So ill make my calls when I can . I'm beside myself. One moment, at a time here. Just wanted you to know, since you took time out for asking. Thank you for asking...Linda

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Justin, I've seen this nurse before...she has been very thorough. I have no problem seeing her, it was that insurance mix up. As for me wanting to switch oncologists, is a preference I'd rather not go into here. So far, I'm still MGUS. If my M spike, or ratios spike on this next test, I'd like to see another oncologist...just a personal preference. Thanks for your reply...ENJOY YOUR DOGS, so much love there!

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Nancy, Alumna Mentor | @1nan | Apr 23, 2018
In reply to @j42smith "Hi, Is there anyone out there that can help me get some insight into the disease...." + (show)
@j42smith

Hi,
Is there anyone out there that can help me get some insight into the disease. My father was just diagnosed monoclonal gammopathy, and i've read some literature, but I want to talk to someone who has actually had a loved one go through the same thing. The doctors are not offering any treatments for him, because of his diabetes, and renal failure. He also has a clotting disorder. The doctors also told us that they do not recommend him for chemo with all of his other health issues.

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Hi. I lived with monitoring MGUS from 2002 until 2004, then followed my smoldering myeloma until I needed treatment in 2016. I saw my physician at Mayo in MN annually, and my local hematologist/oncologist in between. The two doctors communicate about my condition, changes, and treatment. Yes, they actually talk to each other! In June I will be starting my second year of treatment for Multiple Myeloma.I would suggest getting established with doctors you trust, and stay informed about all aspects of your options and treatment. My faith allows me to stay on this journey with no fear. I hope you can make a consult happen, then have care providers who work together and give you confidence in your decisions. This does not have to be "awful". Good luck.

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maryy | @maryy | Oct 11, 2018

@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy

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1 reply
Nancy, Alumna Mentor | @1nan | Oct 11, 2018
In reply to @maryy "@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy" + (show)
@maryy

@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy

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I am now in year 3 of treatment, and in remission. Hope reigns because of the continual options for care. Keep asking questions, pay attention to all good opportunities, and be kind to yourself. You can do this.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Oct 12, 2018
In reply to @1nan "I am now in year 3 of treatment, and in remission. Hope reigns because of the..." + (show)
@1nan

I am now in year 3 of treatment, and in remission. Hope reigns because of the continual options for care. Keep asking questions, pay attention to all good opportunities, and be kind to yourself. You can do this.

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I was diagnosed with MGUS a year ago. I had insisted on a new nephrologist due to clinic practice issues. I am also a kidney patient, at stage 3b. My new Dr saw lab work that indicated problems, and sent me to the hematologist oncologist. After scans, more bloodwork and bone marrow biopsy, I am now being monitored for MGUS, and was most recently at 5%. I am eternally grateful for my new kidney Dr, as she told me the labs showed this should have been addressed earlier. We chalk it up to my old HMO just not wanting to address actual problems.
Ginger

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1 reply
Nancy, Alumna Mentor | @1nan | Oct 12, 2018
In reply to @gingerw "I was diagnosed with MGUS a year ago. I had insisted on a new nephrologist due..." + (show)
@gingerw

I was diagnosed with MGUS a year ago. I had insisted on a new nephrologist due to clinic practice issues. I am also a kidney patient, at stage 3b. My new Dr saw lab work that indicated problems, and sent me to the hematologist oncologist. After scans, more bloodwork and bone marrow biopsy, I am now being monitored for MGUS, and was most recently at 5%. I am eternally grateful for my new kidney Dr, as she told me the labs showed this should have been addressed earlier. We chalk it up to my old HMO just not wanting to address actual problems.
Ginger

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Stay alert, and keep being your own best and informed advocate. And in between, enjoy a good life of your own making.

REPLY
Kay Rovik | @anniemaggie | Oct 19, 2018

I was diagnosed with mgus in 2003. I saw a Dr in hematology but since see an oncologist. It really isn't that much of a time bomb. I have to go to the cancer clinic twice yearly to have labs done, then a week later to see the doctor. In all these years there hasn't been any problems, I have smoldering mgus. The labs results are 3 areas and are a graph. The only problem was I got anemia which was a shock because I didn't know it. I had to have an iron infusion, and the Dr thought I would need that every 6 months, but 3 years later my iron is always checked and no problems. Of all the time bombs in medicine believe me don't get scared.

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1 reply
Nancy, Alumna Mentor | @1nan | Oct 19, 2018
In reply to @anniemaggie "I was diagnosed with mgus in 2003. I saw a Dr in hematology but since see..." + (show)
@anniemaggie

I was diagnosed with mgus in 2003. I saw a Dr in hematology but since see an oncologist. It really isn't that much of a time bomb. I have to go to the cancer clinic twice yearly to have labs done, then a week later to see the doctor. In all these years there hasn't been any problems, I have smoldering mgus. The labs results are 3 areas and are a graph. The only problem was I got anemia which was a shock because I didn't know it. I had to have an iron infusion, and the Dr thought I would need that every 6 months, but 3 years later my iron is always checked and no problems. Of all the time bombs in medicine believe me don't get scared.

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We always taught our children, "Be smart, not scared." That lesson applies to everything. That set them up for the other lesson, believing us when we told them, "It isn't time to worry." Funny how "time to worry" never seemed to happen.

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