[barb]

diagnosis confusion

by barb on Wed May 02, 2012 10:38 am

Good Morning,

I am 48 female in good health, I thought...

I was diagnosed with MGUS in 7/10 and my oncologist has made it seem that i should not be concerned really at all.

However, here are the numbers, which are recently changing.

I presented initially with an Mspike of 1.0 and 5% plasma cells from two different BMB sites-hip and spine(not fun).

I initially presented with zero parts iron in my marrow. Two Fereheme infusions helped that, but iron numbers heading down again. I had a uterine ablation to stop heavy periods.

Recently, I had a very low Vit d number-now on 50,000 units per week.

My albumin number is falling from mid normal range towards bottom of normal(have pending labs which may come in today).

My kappa FLC broke out of normal this past july to 28.95 and as of today are at 34.9
My lambda is at 9.8
My ratio today is 3.8

I have Bence Jones in my urine.

I am going to Johns Hopkins for a second opinion and would love to get into something at NIH.

But I am so damned confused about my numbers. From everything I have read, I do have reason for real concern.

I welcome any and all input.

Blessings and peace to all of you,
barb

[terryl1]

Re: diagnosis confusion

by terryl1 on Wed May 02, 2012 2:07 pm

Hi Barb, for the NIH, contact Dr. Landgren's office at the NCI and they will probably set you up with an evaluation date for his study of the progression of myeloma from its precursor states. The evals. there are very thorough and there will be no doubt where you stand afterwords and you will have peace of mind. Good luck.

[barb]

Re: diagnosis confusion

by barb on Wed May 02, 2012 5:12 pm

Thanks so much Terry! I emailed them this morning and they got back to me in under an hour!

I am hopeful someone can tell me where i stand. I can deal with knowing..Not knowing sucks!

Peace,

barb

[dianem]

Re: diagnosis confusion

by dianem on Thu May 03, 2012 1:37 pm

Hi Barb - My hemo-oncologist said the same thing to me, 'it is just Ig MGUS chromosome 7' and after I had a BMA. I feel some doctors tend to downplay the seriousness of MGUS being a pre-cancerous condition for multiple myeloma. I was told not to worry about it, that was her job. When you research Ig MGUS, it is the most common form of precursor of multiple myeloma (yes about 65-70% are Ig). I worry about it everyday. Diane

[barb]

Re: diagnosis confusion

by barb on Thu May 03, 2012 1:48 pm

Hi Diane!

Those were my doctors words almost to the letter! It's her job my .........! It's my life!
I love her, but i do think a myeloma expert is required.

I am sorry that you worry every day Diane-while i recognize that this is likely serious and getting more serious for me-I try to put it away except for times like now, when I am waiting on labs and heading for another opinion.

I wish you some peace each day Diane!

fondly,
barb

[dianem]

Re: diagnosis confusion

by dianem on Thu May 03, 2012 1:59 pm

Thanks, Barb - I hope the labs turn out OK. The waiting is the worst. Oh, I bet your doctor also said, 'MGUS is sort of like having a colon polyup you can't remove and don't know which way it will go.' Her final word of advise as I left her office, was 'stay off MGUS-MM webpages.' Yeah, right. Diane

[barb]

Re: diagnosis confusion

by barb on Thu May 03, 2012 2:03 pm

Omg, Diane-I'd be laughing if it weren't so damned sad that dr's treat us like that. She said exactly those words, "Stay off the internet"

Wow-do they teach that crap at medical school?

Wishing you all the best!

barb

[Art]

Re: diagnosis confusion

by Art on Fri May 04, 2012 9:35 am

Barb
You won't regret going to the NIH. I have SMM and I am taking part in the natural progression study. They even reimburse for travel if you take part in study.
Good Luck
Art

[Dr. Edward Libby]

Re: diagnosis confusion

by Dr. Edward Libby on Sat May 05, 2012 3:39 am

Hello Barb,
Many of the labs you are referring to do not have a relationship to MGUS or SMM. The iron and Vitamin D are different issues and should be addressed by your primary care doctor. The changing albumin is odd and low albumin is a measure of advanced myeloma but your situation is different so I am uncertain as to its meaning. Nutritional status plays a role in albumin levels but unless you are really ill your albumin should not be below normal. I think this should be monitored only because it is not below normal at this time.
Having Bence Jones proteins in your urine and elevated serum free light chains in your blood is related to MGUS though. It is VERY important to know ( and always worth repeating) that the key issue in diagnosing multiple myeloma is the presence or absence of CRABI criteria. The CRABI criteria reflect the presence of high calcium levels, anemia, kidney dysfunction, lytic bone lesions or recurrent infections. It sounds like you probably do have MGUS. The good news is that in general MGUS progresses to symtomatic multiple myeloma at a very low rate...1% per year. Therefore the chances of never having symtomatic myeloma are good for many patients.
It is appropriate to be worried about having MGUS. You are doing all the right things though...learning about your disease so that you can have a strong voice in managing it and seeking a second opinion.
Participating in studies to further the understanding of MGUS and myeloma is a great thing and everyone who does this is a myeloma warrior ! I hope you are albe to get to the NIH !

I have found that it is a little bit difficult to find information about MGUS for patients. The International Myeloma Foundation website has some good info though.
Resources/links that will give you more information about MGUS include:

online podcast by Dr Robert Kyle
http://myeloma.org/ArticlePage.action?articleId=879

Publication on MGUS from the IMF by Morie Gertz
http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=879&aTab=-1&tBack=&tDisplayBack=true

[torimooney]

Re: diagnosis confusion

by torimooney on Sat May 05, 2012 1:03 pm

Last year at this time, I too had been diagnosed with MGUS .. I declined a BMB and agreed to be monitored closely. My protein and immunoglobulin numbers were consistently rising but all else looked good and my physical health remained excellent. Two weeks ago, I went to NIH to participate in the natural history study of MGUS and it was there multiple myeloma was confirmed. Those folks are wonderful. ..... candid , yet compassionate. I had a rib pain in August of last year and had the full skeletal survey at that time by my oncologist. It was negative so iIchalked it up to a muscle strain. My oncologistalso saw a defect in the skull that he felt was most likely congential. At NIH, thru xray and CT scan, they found a healing rib fracture and a skull lesion they say is indicative of multiple myeloma. The BMB at NIH confirmed it. I guess my point to all this is to say be diligent and continue to get close monitoring of your blood work and perhaps push for a CT or MRI 's to determine what is going on with your bones. I cant sing the praises of those folks at NIH loud enough. Good luck.