Mgus

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Mgus

by Chellybell on Fri Dec 16, 2005 12:00 AM

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I am a 33-year-old mom who just found out I have MGUS. Nothing else seems to be wrong with me, thankfully, but I am SO scared, especially after doing my research. None of my friends or family seem to really understand the "ticking time bomb" I feel is inside me. Nor do I want to explain. The oncologist gave me a lecture about "sweeping this under the rug" and getting on with it--life, I guess. I am a single mom with no one to take care of my kids but me if anything should happen. I would just love to have someone to talk to. Michelle

Mgus

by Inazone2 on Tue Jan 03, 2006 12:00 AM

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I sorry to hear about your diagnosis. I'm not really sure what it is but will definitely be an ear for you whenever you need. I am currently caring for my husband who was recently diagnosed with stomach cancer. Please let me know if there is something that I can do.

Mgus

by Tamran on Fri Feb 03, 2006 12:00 AM

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Michelle I was diagnosed with MGUS December 2004, when I was 44 years old. I have high IGA. I remember it was really scary in the beginning and I did a lot of research. I am tested every three months and my blood protein levels rose each time. During this period had several bone marrow tests and bone scans. Everything going up. However, I just received my test results in January and my protein levels dropped (only 10 points), but this was significant for me. I have settled down now and my life is finally getting back to normal. For anyone who has this, it is always difficult in the beginning, but as long as you are monitored reguarlly and the numbers are not too high everything will be ok. What type of protein do you have? The level (how high) the protein goes before you really need to be concerned varies by the type of protein. Remember, there are people who have MGUS and never progress to cancer. Hope this helps a little Take care Tammy

a Late Reply

by Chellybell on Fri Feb 03, 2006 12:00 AM

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Hello, Janeen, Thank you so much for your encouragement. I'm sorry for taking so long to respond--I was hopitalized with meningitis/encephalitis when your message posted, so I missed it completely until today. MGUS is a pre-malignant condition of the bone marrow that turns into multiple myeloma about 25-40% of the time. Since it requires tests every three months, it's hard to escape thinking about it, I guess. To tell the truth, I feel like a whiner about my MGUS condition when I hear of someone, like your husband, who's already facing cancer. How is he doing? Equally important, how are YOU doing? I hope you're finding bits of time to rest in both body and spirit...do you have family support? What is your husband's name? I'd like to pray for both of you by name each day, if that's okay with you. Take Care, Michelle

Mgus

by Weronica on Fri May 12, 2006 12:00 AM

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Hello there. I;m sitting here searching for information on MGUS and came across this side and saw for the first time that other people struggles with the same as me. Just cant believe it. Excuse my english , I am from Norway. I!m so glad that I found you. I,m 45 years old and my MGUS was found 8 mnds ago. IgM kappa protein. I would like to have contact with you. Noticed that you are app. same ages as me. (I.m married and have 2 boys at 16 and 20.) Feeling of a time bomb represent the fear. . This is the first time I can share my fear with someone who understand what it is like. Hopefully the fear will slow down with time. How are you doing today? Best wishes from me

RE: Mgus

by Cynthia_Rose on Wed Mar 07, 2007 12:00 AM

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I'm a 50 year old female and just found out I have Mgus,I need to hear some positive things from people out there with this, also I'm on lexapro a ssri med for depression I just found out that one of the side effects is it effects your platelet count and I was wondering who else is on anykind of ssri and has mgus.

please respond, thanik you, cynthia rose

RE: Mgus

by Pattin on Tue Mar 20, 2007 12:00 AM

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Hello,

I am 44 years old and just last week diagnosed with Mgus.  I am very scared.  I am 2 time Hodgkins Disease Survivor and in million years, did I ever think that 10 years later I would have Mgus. I never heard of it and never told about it.

I am scared, not sure what this means for me. I have to go for a bone marrow biopsy and other lab tests...my doctor and oncologist tell me not to worry.

But can't help it, I am worried.

Thanks for listening. Patti 

 

RE: Mgus

by Chellybell on Sun Apr 22, 2007 12:00 AM

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Hi, Patty,

Sorry, this is the first time I've checked the board in quite a while.  Of course you're scared, honey--this is terrifying at first.  It does start to feel normal after a while, though--I've had it for over a year, and have recently notcied that life just took over and I stopped thinking about it so much.

Since you posted, I hope you've gotten some results back that have eased your mind.  For the majority of people, MGUS stays MGUS and never turns into anything more than annoyingly regular bloodwork.  Please let me know how you're doing, Patty.

 Michelle 

RE: Mgus

by Chellybell on Sun Apr 22, 2007 12:00 AM

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Hi Cynthia Rose,

I haven't taken any anti-depressants, but I do have the lovely MGUS.  Some positive things...?  I'm still here, still healthy, and my levels are stable.  You may be reassured to look up some of Dr. Robert Kyle's studies--he's with the Mayo Clinic and is the world leader in MGUS studies.  I actually had the pleasure of speaking to him about my case, and he was able to reassure me, based on my test results, that my chances of moving into myeloma were very small.  His main advice?  To keep my body in outstanding physical condition, through diet, exercise, sleep, and hydration.  He said if the time ever comes, I should be ready to fight as hard as I can and that people in peak condition seem to do quite well.  Hope this lifts your spirits.  Hang in there, Cynthia Rose.  Things will settle down, once you have some time to adjust.

 

Michelle

RE: Mgus

by Chellybell on Sun Apr 22, 2007 12:00 AM

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Tammy,

I have IGG lambda, and it's fairly small, thankfully.  How have you been doing this year?

Michelle 

 

 

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