Waldenstrom's Macroglobulinemia Community
Expansion to Include MGUS?
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This patient support community is for discussions relating to Waldenstrom's Macroglobulinemia, non-Hodgkin lymphoma, monoclonal gammopathy of unknown significance (MGUS), multiple myeloma, and plasmapheresis.

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Expansion to Include MGUS?

I wanted to get everyone's impression on perhaps expanding the forum to include MGUS - monoclonal gammopathy of unknown significance.  Perhaps some of you were diagnosed when you had MGUS, and then it progressed to Waldenstrom's, although MGUS does not always progress, and of course, it can also progress to other cancers.

I think it might be helpful to expand the forum to include folks who are dealing with a diagnosis of MGUS so we can provide support and help with their questions as well.  I know that many people are very frightened when faced with a diagnosis of MGUS and they don't know how best to proceed.

Physicians frequently give many different answers on how best to proceed medically and whether or not there is any early treatment that might be helpful for them.  Some tell them that there is nothing at all that they can do.  Others say that there might be some measures that could be helpful.

Additionally, there are varying statistics given to people on their chances of developing macroglobulinemia, multiple myeloma, and other problems if someone has been diagnosed with MGUS.  I think its a very confusing issue - particularly for the newly diagnosed.

I thought that our forum here may be the most qualified to handle this topic and I also felt that handling this topic will help to enrich our forum and provide more information and ideas since it will engender more posts on a healthcare issue so closely related to Waldenstrom's.

Any thoughts on this from anyone?
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9 Comments Post a Comment
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Avatar_n_tn
Hi.
I think that is a good suggestion.
I'm not sure of the present statistics for MGUS, but I'm sure a forum for MGUS will be helpful.
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417007_tn?1310937571
I agree.
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Avatar_f_tn
Alagirl asked if it could be included here. According to the heder to the forum, it IS included here.
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507642_tn?1210766370
It's all about helping - so of course!
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541132_tn?1218717459
I was diagnosed with MGUS a few months ago. I would like to know how it can be contracted? What are the possible causes? I feel weak, nauseas, and dizzy, many times. What can I do? Is there any medication? Please help.
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Avatar_f_tn
my mum's been diagnosed with mgus on monday, she feels pain in her back and shoulders and tingling/numbness in her hands and fee.t she has a high Igm protein hoping it dont transform into waldenstroms m.
we need more forums regarding these two conditions.......
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Avatar_n_tn
I agree, I have also been diagnosed with MGUS. Currently having labs done every three months and the proteins are increasing on the high level...Yes, I'm a candidate for Multiple Mylenoma.. I'm seeing an Oncologist for my disease...
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Avatar_f_tn
hi sherrill hope your feeling ok, it's frightening at the prospect of mgus turning into myeloma or waldenstroms two words i had never heard of until jan 1st 09, now i feel i know what the internet tells you.
what protein of yours is increasing? my mums in dec 09 was Igm 17gdl i find it quite confusing trying to work out how abnormally high it is, but it's hight enough for barts hospital to keep taking her blood, they said it was just mgus and they're testing for the thickness of her blood but she just isn't well quite alot of the time, shes on 30ml morphine tabs twice daily & has a liquid form to take when her shoulder hurts & her sinusitus has been going on for 8-9 months somethings not right, she can't sleep, has two purple swollen earlobes & i thought i noticed her nose going purple but wasn't sure.

Igm high paraprotein usually is a sign of mgus or waldenstroms but can sometimes tho very rare be multiple myeloma which fits mums symptoms so were playing the waiting game  praying she is gonna have just mgus. mums just 60 this is so unfair.

i do hope your ok sherill as a daughter it really does affect everyone, barts say mgus mums dr's think myeloma all this uncertainty is so frustrating, have you had any protein in yr urine, my mums was clear thankfully but she has become aneimic and has pain everyday even tho she;s on morphine cant believe its just mgus.
mum had xray & ct scan both all good.
please keep in touch with how yr doing xxxxx yr in my thoughts.
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264121_tn?1313033056
I would be so interested in the journey the two of you are taking with Sherrill and Tina's mom.  Can you please keep us posted on the specifics of your labs and biopsies as you go along?  I was moving and kind of offline for a while there, but I plan to stay around and you are also welcome to pm me anytime, for any reason.

My grandmother has WM, and has for years probably.  We didn't understand before why she had so many broken bones in the past.  Nobody did bone marrow until two years ago and she already had full blown Waldenstrom's at that time (they thought at first it was MM, but quickly narrowed it to WM).  She is now 86.  She is doing quite well on tx and even still volunteers at her local hospital (although she's mad they won't let her push the wheelchairs anymore, lol)  I have to say that she honestly feels pretty good since her tx with rituximab, and she only had to have procrit and neupogen during that tx.  Her regular wbc and hemaglobin and hematocrit counts have been quite good since that time and she has not had to go through further rounds of rituximab as of yet, after two years.

I have only been able to watch her progress and labs and biopsies since she was diagnosed with WM - as we did not know earlier that she had any type of proliferative issue, so I would be very interested in seeing how things progress (or hopefully, don't progress) when people have MGUS, and in what type/how often surveillance is done by doctors in different parts of the country.

I have bone marrow irregularities, early osteoporosis, and an unknown procrit dependent anemia, so I do have fears that I will also be going down the MGUS route at some point in the future.  
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