Mgus

Not sure I'm signing in the right place -- maybe someone can redirect me if possible.

I was diagnosed in 2000 with MGUS.  I see other people have lengthy additions to that, i. e., IGA with something or to something or whatever, so I probably have not asked enough information to be clear where I stand. 

Long story short.  I see a hematologist/oncologist every six months and have bloodwork and a full skeletal survey (X-ray) done.  Up until 6 months ago my protein count stayed at 1.2 (whatever), then it went to 1.3 and today I am at 1.6.  My doctor says not to be concerned until it gets to 2.0.  It was mentioned today that my SED was up as well.  Naturally what alarms me is that it stayed the same for 7 and 1/2 years and in six months its gone up a total of .4 bringing me closer to that 2.  My fear, of course, is what if it continues at this renewed rate? 

I was alarmed when I was first diagnosed, but eventually after there was no significant increase I became less concerned (except at the 6 mos. check-ups).  I was getting real comfortable that I just might escape this MGUS developing into anything serious before I turn 100 or expire from any number of unexpected sources. 

After 18 years of being a single mom (no financial or emotional assist from my ex) I had finally seen my children through college and married, and then had the unbelieveable good fortune to meet and marry my husband (worth the wait!!) and in the past 5 years welcomed three beautiful grandchildren, now this!

Anyway, I'm going to try and not get over-exercised about it; I too was told early on not to worry that it may be a long time before the MGUS developed into anything truly negative -- if ever.  However, since  the count has moved substantially in the past six months I am a little shaky again.  Can anyone out there explain in laymans terms what is going on and what to ask about?  I don't mind going about with the MGUS diagnosis as long as that's what it stays. . . . 

I don't have your answer, you will see I posted a somewhat similar question about IGA levels just below you.

My situation is somewhat different in that I'm 52 and have an 8 year old son and wife to consider.

I can say I've never had anxiety and fear like this.  I can't see the oncologist until June 30th to interpret this latest round of blood work so its a long time to stew.  I can't seem to get the thoughts about this out of my head, its with me constantly.  I try to keep telling myself that nobody says I have anything which is true, but its hard to be convincing.

To make it worse I'm an RN and part of my job is doing phone triage to get people into mental health services.  Often they have large medical issues as well which makes my anxiety even worse.

I hate this. 

On 5/15/2008 Nanette7 wrote:

Not sure I'm signing in the right place -- maybe someone can redirect me if possible.

I was diagnosed in 2000 with MGUS.  I see other people have lengthy additions to that, i. e., IGA with something or to something or whatever, so I probably have not asked enough information to be clear where I stand. 

Long story short.  I see a hematologist/oncologist every six months and have bloodwork and a full skeletal survey (X-ray) done.  Up until 6 months ago my protein count stayed at 1.2 (whatever), then it went to 1.3 and today I am at 1.6.  My doctor says not to be concerned until it gets to 2.0.  It was mentioned today that my SED was up as well.  Naturally what alarms me is that it stayed the same for 7 and 1/2 years and in six months its gone up a total of .4 bringing me closer to that 2.  My fear, of course, is what if it continues at this renewed rate? 

I was alarmed when I was first diagnosed, but eventually after there was no significant increase I became less concerned (except at the 6 mos. check-ups).  I was getting real comfortable that I just might escape this MGUS developing into anything serious before I turn 100 or expire from any number of unexpected sources. 

After 18 years of being a single mom (no financial or emotional assist from my ex) I had finally seen my children through college and married, and then had the unbelieveable good fortune to meet and marry my husband (worth the wait!!) and in the past 5 years welcomed three beautiful grandchildren, now this!

Anyway, I'm going to try and not get over-exercised about it; I too was told early on not to worry that it may be a long time before the MGUS developed into anything truly negative -- if ever.  However, since  the count has moved substantially in the past six months I am a little shaky again.  Can anyone out there explain in laymans terms what is going on and what to ask about?  I don't mind going about with the MGUS diagnosis as long as that's what it stays. . . . 

Dear Nanette7:

There is nothing worse than the waiting.  But you are doing the right thing to keep ahead of anything that might be more serious.  If necessary, get to one of the recognized insitutions near you,  MD Anderson, Houston.Sloan Kettering,NY, Mayo Clinic, Rochester,MN,Jacksonville,Fl,Phoenix AR. We were on the worry list for about 2 years, but my husband is 77 years old and we have had a good life, but with the continued check ups, we are treating and he is doing quite well.  Staying ahead is the best you can do and please get a second opinion from a large insitution, it is worth it in the long run.   Good luck, remember you are still young and there is a lot of time left for you. 

Ozy31 

On 5/15/2008 JoeStiger wrote:

I don't have your answer, you will see I posted a somewhat similar question about IGA levels just below you.

My situation is somewhat different in that I'm 52 and have an 8 year old son and wife to consider.

I can say I've never had anxiety and fear like this.  I can't see the oncologist until June 30th to interpret this latest round of blood work so its a long time to stew.  I can't seem to get the thoughts about this out of my head, its with me constantly.  I try to keep telling myself that nobody says I have anything which is true, but its hard to be convincing.

To make it worse I'm an RN and part of my job is doing phone triage to get people into mental health services.  Often they have large medical issues as well which makes my anxiety even worse.

I hate this. 

 

Hi Joe:

We all hate this.  Getting to the answers is the most frustrating thing I have ever had to deal with but I am much older and have a husband who is now on treatment, he is 77 years old and we don't have the financial problems to deal with.  Are you a veteran?  They will help if so.  Get on the MM site, there is so much information there that will help with the anxiety.  I read everything I can get my hands on.  And also, get to a second opinion if possible, we did and are so glad we did.  We go to the Mayo Clinic in Rochester and they are wonderful.  A large institution is the best for this type of problem.  You are so young and will come out OK with this.

Good luck and let us hear how you are doing?

ozy31 

Wow.

.I am sorry that so many are so alrmed.Or....I am too calm..I started going four yrs ago this Nov. for checkups for mgus.I am 56 year old female,wife,mom and grandma of two.I had melanoma five yrs ago.Had surgery and am A-OK and none spread.(just history- nothing more!) That was hairy!! My primary MD. found the mgus by accident and was so small could harldly detect it.None the less he did, and off we go! So every yr. to a major University cancer center for blood drawn ect ect. You  know the rest..The last time I did a" bence jones" urine 24 hr. test and had proteins in that.But no alarms yet with that  so will see what happens.I saw the report and they had even canceled a bone marrow.test.Must have been boarder line to check.Hooray !! .I guess I choose to be one that goes with the 10% chance of anything delveloping.Maby I really figure if I ignore it...out of sight out of mind deal..But go through phrases I think about it and will handle it.I see more people on message boards more affraid then they should be.I think...Well is good to share experiences and feelings.I enjoyed reading your story.Also respect everyones concerns thats for sure

Pam