[kmi822]

introduction

by kmi822 on Fri Apr 26, 2013 3:02 pm

Hello

In April 2011, my primary care doctor found some abnormalities in my regular blood work during my annual physical. He was a new primary care doctor so I was a little caught offguard as I had never had any abnormalities in my blood work and up to this point had never been on any medications. He also found my thyroid levels off so he put me on synthroid. He referred me to a hematologist/oncologist for some follow up tests. For the next 6 months I underwent various tests to monitor my condition which at the time was described as MGUS. I had blood work monthly, a 24 hour urine collection and test, a bone scan, and a bone marrow biopsy. Over the 5 months the specialist continued to tell me that there was no changes in my bloodwork so no need for any treatment (chemo). Then In September 2011 she explained that she wanted me to prepare my self that she was going to begin treatment in early 2012. Of course my first question was "treatment for what" and "why since there were no changes in my levels". Her answer was it will most likely change in the next few months.

Since I was now in panic mode I decided I better seek out a 2nd opinion. I scheduled an appointment at Dana Farber in Boston. They did some bloodwork and I met with one of the doctors and that was when I was told that I was really dealing with Myeloma, which is cancer of the bone marrow. Talk about feeling like you got punched in the gut. I think all the air was sucked out of my body. Shockingly I didn't cry. The doctor at Dana Farber was great and he said I had a few options he could be my primary oncologist or I could stay with my local ocologist and have my results copied to him. But essentially he said at this point I should just continue with monitoring my blood levels and any other "symptoms" and there was no need for any treatment until there was changes.

So here we are almost 2 years since that fateful day when my primary care doctor found abnormalities and I am still "smoldering". No changes to my bloodwork and no treatment.

For the past few appointments I haven't really been asking many questions because they have told me there were no changes in my levels. I do want to be a little more involved in my care and treatment plan so I have started tracking my levels. I also have started a list of questions for my next appointment which is in 2 weeks.

In addition, I have made the decision to share my story with people because I want to raise awareness for this type of cancer. The scary part about this type of cancer is that although I currently do not have any symptoms except for feeling fatigued, I still have this underlying condition that I have to monitor. I always just chalked my fatigue up to all the running around I do as a working mom.

I am currently 42 years old with two kids (11 and 9) who I love very much. I have vowed to stay positive and strong for both myself and them. I also have a tremendously supportive husband who has been amazing and strong during the past two years. My family and I have gotten involved with both American Cancer Society (Relay for Life) and the LLS.

Any words of wisdom please feel free to share.

[Multibilly]

Re: introduction

by Multibilly on Fri Apr 26, 2013 4:55 pm

Sorry to see you join the club Karen. I'm smoldering as well.

It's great you got a second opinion and are in a steady routine of monitoring and charting your markers and doing your homework. I really found that graphing all of my key markers (including the limits for normal values) over time makes it a lot easier to spot trends.

You are also writing down all your questions, which is great. I always seem to have a whole new set every time I drop in to see my doc. I invariably forget to ask the doc something unless I have previously written it down.

I also found it helpful to ask the doc(s) just what sort of treatment he/she is likely to consider should you progress. I've gone out of my way to talk to multiple docs that have opinions that range from automatically suggesting an ASCT to those that would never or rarely suggest an ASCT. Given that you have time (or may never progress to multiple myeloma), I think it is healthy to get this range of views and to then formulate your own tentative plan of action, should you progress.

I think there is also something to be said for the natural treatment routes. I am currently doing a lot of supplementation targeted at multiple myeloma, but I am also hearing from others that have been down this path that it can take a year or more to see the positive results in one's markers.

Best of luck.