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just sharing my story

Posted by on Mar. 1, 2012 at 11:27 AM
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Hello

I am fairly new to this group so I thought I would share my story.  Last year in April 2011 during a routine annual physical with my doctor they found some abnormailities in my blood work results.  My doctor referred me to a hematologist/oncologist for further tests.  At that point I was told I have Monoclonal Gammopathy of Unknown Significance(MGUS).  I was like ok what the heck is that...and the doctor replied its basically a pre-cancerous condition. (picture me getting punched in the gut).

So at that time we did some further testing (bone marrow biopsy (not fun at all), skelatal survey (basically an xray of your entire body searching for bone lesions) and a 24 hour urine collection test (such fun LOL).  Then the hematologist said ok your levels are ok and we are just going to monitor your blood work every 2 months and when there are changes we will discuss treatments.

Then in October after a couple rechecks of my blood work and no changes my hematologist/oncologist stating that she wanted me to prepare myself for another bone marrow biopsy in May 2012 and begin treatment in summer 2012.  My response was treatment for what? and she simply said cancer.  (my mind was like hang on put on the brakes).  no change in anything why starting treatment???  time for a 2nd opinion so off to Dana Farber in Boston with my husband (who has been amazing through all this).

This hematologist/oncologist reviewed everything including new blood work he took.  He indicated that based on his experience with my blood levels where they were I was more accurately diagnosed with Multiple Myeloma (bone marrow cancer).  So I decided to switch my local hematologist/ocologist and I have found a doctor at Yale who is much more familiar with my type of cancer.

I have been going to a support group for Multiple Myeloma patients and caregivers along with doing so much research to learn as much as I can.  As of right now I am currently not at a point where I need treatment (chemo and/or stem cell transplant) but I am told that at some point my cancer will progress and that I will need treatment.

So that's my story.  If there are any other Multiple Myeloma patients out there who want to chat please contact me.

by on Mar. 1, 2012 at 11:27 AM
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Replies (1-2):
Angellinda
by Member on Mar. 1, 2012 at 3:54 PM

 I'm Sorry for all you've been through.. And will fight on thrugh. Its so hard. I got Triple Negative Breast Cancer in 2010.  I'm in pain from head to toe, I have no income and my DH lost his job 3 years ago. He has no income! I did meet a gal at a pink ribbon function. She had what you had. She told her stories.. where nothing was easy.. But I never met  this bald headed girl before nor had she met me.. But she was a fighter and got through SO much! If you can get second opinions and all. You can find your  right course of treatment! I hope you get the best results possible!! Also Trials too..?? Sending my heartfelt care for you and all Fighting Cancer!!

MommyBebe
by New Member on Mar. 16, 2012 at 10:09 AM

PRAYERS

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