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what are the chances of me having multiple myeloma

by heatherofmc on Mon Feb 11, 2013 10:05 pm

For about a yr I have been experiencing daily low grade fevers (100°) every afternoon. I have also been extremely fatigued by about 2pm. The only off results with my blood tests have been a consistent high gamma globulin protein. (Not sure if im saying this correctly
I have just been sent to an oncologist/hematologist. He told me that because of this spike, fevers and generally being unwell, I need a bone marrow biopsy. Is this necessary? He said we need to rule out multiple myeloma. If I did have this wouldn't other things such as cbc come out abnormal? I am only 36 and the Doctor said I'm too young. My only other symptoms are sore ribs and spine, headaches fingers goung numb off and on. What are your thoughts?

heatherofmc

Re: what are the chances of me having multiple myeloma

by Multibilly on Tue Feb 12, 2013 9:09 am

When I was first diagnosed, I had borderline high globulin and total protein counts in my routine blood work. This is what tipped my doctor off that something may be wrong. As a next step, I then had a serum and urine electrophoresis test to see specifics on the amount of monoclonal proteins associated with multiple myeloma in my system and what types they were. I then got a bone marrow biopsy to determine how much monoclonal protein was in my bone marrow and a full skeletal xray to see if I had any bone lesions. If your doctor suspects myeloma, getting all these tests (including a full metabolic panel to see if you have any anemia, high calcium, good kidney function, etc) is pretty standard stuff. The bone marrow test is really the most definitive test of the presence of multiple myeloma. Don't fret over the procedures. Best of luck.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Nov, 2012

Re: what are the chances of me having multiple myeloma

by Nancy Shamanna on Tue Feb 12, 2013 9:21 am

Hi Heather, What you are describing could by multiple myeloma...sounds somewhat familiar to what I went through before being diagnosed. unfortunately, younger patients can also have multiple myeloma. One thing I could say is that, if you do have it, and you get the correct treatments, to put you into remission, you will probably feel much better after that! Best of luck...please let us know how it turns out.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: what are the chances of me having multiple myeloma

by Dr. Ken Shain on Tue Feb 12, 2013 10:40 am

What you have stated may be related to myeloma. So it is important that you get an appropriate work-up. This includes evaluation of potential proteins in your blood (serum protein electrophoresis (SPEP)-immunofixation (IFE), quantitative immunoglobulins, and serum free light chains) and urine (24 hour urine collection- UPEP-IFE), bone survery (23+ xrays), in some cases MRI of your spine or PET/CT, a bone marrow biopsy (with analysis of the myeloma chromosome by 1) metaphase cytogenetics, FISH, and optionally MyPRS).

The average age of a myeloma patient is 69-70, but unfortunately folks much younger may still be diagnosed. I would also highly recommend that you seek a myeloma center of excellence (if not at one already) for a secondary opinion if the diagnosis of myeloma is even a potential after these initial tests. I feel this is a disease whose management should be at least overseen by an expert in the field.

Please keep us updated on your news and goings on.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

Re: what are the chances of me having multiple myeloma

by Lys2012 on Tue Feb 12, 2013 11:08 am

Hi unfortunately younger people still do get multiple myeloma, though it is rare it still happens! Myself and a few others who read here were in our early to mid 30's when diagnosed.

Good on your Dr. for thinking for being thorough in his/her testing and uncovering the protein. (using your symptoms not your age) if I had a protien test I could have been diagnosed two years earlier, instead of going dr. to dr. looking for answers.

Good luck, !

Lys2012

Re: what are the chances of me having multiple myeloma

by Cmolinaro on Tue Feb 12, 2013 1:30 pm

I was 31 when diagnosed with multiple myeloma, now I'm 34, but I know quite a few people diagnosed around the same age.

Cmolinaro

Re: what are the chances of me having multiple myeloma

by heatherofmc on Tue Feb 12, 2013 4:02 pm

Thank all of you so much. I am just so tired of not feeling like my energetic self. If this is what I have, I hope they can help my quality of life. I feel like all I do is try to work my 6 hrs and all of the other hrs in the day are spent recuperating. Sometimes I have a few days when I feel normal and then I crash again.

heatherofmc

Re: what are the chances of me having multiple myeloma

by Red Rose on Fri Mar 08, 2013 2:52 pm

I have been told my protiens are eating my red blood cells. I have had all the tests done and have been told i need to be tested every 3 months for multiple myeloma. I will be having an iron infusion since i can't get my lron levels up. My understanding is i have multiple myeloma but it is waiting for the right time to pop up. If this is true how long could that take and why can't they do anything now to stop the protien issue. I hope this is making since. I don't understand this completely. Am i just waitingt to get sick?

Red Rose

Re: what are the chances of me having multiple myeloma

by dishevelled on Wed Apr 10, 2013 10:28 am

In case anyone is reading this thread and wants to know what happened. I have been diagnosed with multiple myeloma.

dishevelled
Name: Heather Trimnell
Who do you know with myeloma?: me
When were you/they diagnosed?: 4/1/2011
Age at diagnosis: 36

Re: what are the chances of me having multiple myeloma

by Dana H on Wed Apr 10, 2013 11:43 am

Hi Heather,

Thank you for sharing your update. I am sorry you received this diagnosis and wish you all of the very best with your days moving forward.

Would you share any more details as to how your doctors/specialists arrived at the diagnosis of multiple myeloma? What diagnostics did they perform to come to this conclusion. I am presently smoldering and am trying to understand the diagnostics of diagnosis. Many thanks to you if yu are willing to share this info.

And again, all of the very best to you moving forward.
Regards,
Dana H.

Dana H

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