MMRF Race for Research: Boston Strong!

On Saturday I participated in the MMRF Race for Research Run/Walk 5K at Carson Beach in South Boston. My husband and I ran in the race in September last year. This time around, we had a full team including some of my family, friends, and someone I know from a support group on Facebook!

It was an absolutely beautiful, cool, morning - perfect for running!


Carson Beach


 

 

Team Sign :)

 

Dr. R wasn't able to speak this year :(

 

 

 

 

 

Ready...set...

 

 

 

 

I finished with a somewhat respectible time of 31:11

 

My awesome team, the myeloma mashers, has raised $2,375.00 to date and the Boston MMRF race as a whole has raised $226,893.01 so far!

Official times,  pictures, and information on how to donate can be found here.

Boston Strong!

Hospital evacuation, 2 specialists down, and aspirin

So it's been quite the week... in more ways than one. I have seen all of my specialists – rheumatologist, ID specialist, endocrinologist, and Dr. R all within the last week. All my blood tests were pretty much FINE. Of course they were FINE.  I saw an endocrinologist who ruled out all other conditions that could be causing my low bone density in my spine. My T & Z scores of my L-spine are -2.2, classified as osteopenia if I were post menopause, but I’m not. Osteoporosis is classified with scores starting at -2.5.  The endocrinologist does want me to have a bone density scan within the next year and I will see him to review the results. He told me to be careful of falls and “no wrestling”. Heh. I wrote that down so I wouldn’t forget. ;) My ID specialist says all conditions within his specialty have been ruled out including the periodic fever syndrome, but he would “keep me in mind” if he thinks of anything or hears of any studies involving people with chronic fevers. My rheumatologist said as long as my joint pain is gone he can see me in 6 months and then just as needed. Two specialists down! YAY! Another bit of excitement was that there was an evacuation while I was at Brigham and Women's for that appointment. Yikes... false alarm, obviously.  

http://www.boston.com/lifestyle/health/blogs/white-coat-notes/2013/04/17/post-marathon-jitters-and-unattended-car-lead-evacuation-brigham-and-women/m70j1UcKeVGs1XgSPomgNM/blog.html

I am still having fevers and all specialists have concurred that they are being caused/triggered by my MGUS/SMM. Also, the low bone density in my spine is due to the MGUS/SMM as well because the most significant loss is in my spine and that tends to be where myeloma presents.  So…that pretty much sucks. But, at least at this time, everything with me is pretty good minus the low bone density and my 10ish% plasma cells. Dr. R said that because of the low bone density in my spine and the fevers, I am definitely more smoldering than MGUS. But, I guess I already knew that. He is going to have a radiologist review/compare my lucent lesion from this February and 2009 to see if there have been any changes within the bone.

Good news for me is that no one wants to treat my low bone density at this time...for a couple of different reasons. I am going to continue vitamin D and calcium supplementation and weight bearing exercise. Dr. R recommended 2-3 aspirin daily to hopefully get the fevers under control (also fights/prevents cancer according to a study he referenced). Within the next year or so I will have a repeat BMB, PET/CT, and bone density.

And the beat goes on... my favorite quote from my appointment with Dr. R was this, "Elizabeth, please don't take this the wrong way. But we as medical professionals find you very, very interesting."

Heh... not sure that's a good thing. :)

I Heart Boston

I was at Dana-Farber today for my three month blood draw and 24 hour urine collection drop off. I see Dr. R, my rheumatologist, and an endocrinologist within the next week to hopefully get to the bottom of what is going on with my crappy, low, bone density.

I was a little nervous driving into town today as I wasn't sure if there would be road closures en route to DFCI, around the finish line area, or around Brigham and Women's Hospital due to the events of yesterday. Turned out to be pretty much, "business as usual." There were a couple security guards by the entrance to DF... I got a little nervous my plain brown paper shopping bag (containing my urine jugs!) would get searched but I went right through.

I've been to various spots on the route of the Boston Marathon many, many, times - since I was a little kid - and have been at the finish line within the last couple of years. Luckily, yesterday I was housebound with the 24 hour urine collecting.

My Facebook newsfeed is currently flooded with friend's posts of pictures, articles, and references to Patriot's Day, Marathon Monday, and Boston.

Here are a few...


What Patriots' Day Means

 

 

 

 

Yanks to play Sweet Caroline

 

 

 

 

 

 

 

 

"People from around the country might think that this is just the day that the Boston Marathon is run. It isn't. In Massachusetts, Patriot's Day is a holiday where the entire state takes off from work and joins together to cheer on and participate in the human endeavor of challenging oneself to accomplish a tremendous physical feat, to promote charity, and to celebrate life and community. This was an attack on the foundation of the Boston community."




 

 

Just so sad.

Bone Density / DEXA Scan - possible osteopenia at 29 - whaaat?

So, I've had an extensive list of questions for Dr. R every visit I've had since last July. At every appointment I never get around to asking all of them - too much to talk about!

One of those questions on my list was, "Do I need a bone density test?" I wrote about this back in December - Skeletal Survey, PET/CT, MRI, DEXA. A bone density was one test that I have never had since my diagnosis in 2009.

I finally inquired and he confirmed that a bone density would be a good test for me to have. I assumed, stupidly, that the test would be normal - how bad could my bones be, I'm only 29! I wanted to have a baseline as I know bone loss is a side affect in MGUS/SMM.

Multiple Myeloma, Smoldering Multiple Myeloma, And MGUS May Be Linked To Osteoporosis

There was a bit of back and forth regarding whether I would have the test at DFCI or just have my PCP order it. I ended up just having the test ordered through my PCP and there was a little confusion on whether or not my insurance would cover the test due to my age. My PCP repeated over and over, "Please be assured that bone loss occurs over many years and even decades. There is no urgency for you to have this test at this present time."

Boy, was she wrong. Long story short, I had the bone density test on Friday.

The test in itself was a piece of cake. By far the least invasive, shortest test I've had to date. I didn't even have to change into a gown or take off jewelry.

 

I met Pedro, the hilarious technician who would be preforming the test. He was a hummer. Meaning, he hummed between every sentence he said.

"Sit right here. hmmmhmhmhmm. Lay your legs out straight. Hmmhmhmmmm. Move to your right slightly. Hmmhmmhmhmhmmmmmm."

You get the idea. ;)

A few quick scans later I was done. I asked Pedro why not ALL bones are scanned (instead of just my femur, lumbar spine, and hip) and I was told that those bones give an indication of what bone density is throughout the body. Doesn't really make sense to me, but whatever. It makes me think of bone marrow biopsies...how can a tiny 1-3cm piece of bone be enough to determine how many plasma cells are in the whole body? Crazy.

I was told that the results of the DEXA scan should be finalized by that afternoon. I decided around 4PM to call my PCP's office to see if a nurse or someone could read me the results over the phone...again...assuming they would be normal.

Nope!

I should have known it was bad news when my actual doctor called me back immediately.

My bone density was not normal. Far from it, in fact. All my T-scores were abnormally very low. My doctor is most concerned with the low density in my lumbar spine because it has a T score of -2.2. Osteoporosis is classified starting at -2.5. :( She said that if I were a postmenopausal woman (I am not) the -2.2 T score on my lumbar spine would be considered osteopenia.

Fudge.

(Fudge is not the actual word I repeated in my head after I heard these results but I'll keep this post PG ;))

My PCP had no recommendations for me other than weight bearing exercise (which I already do) and calcium+D supplements (which I already take). She couldn't give a recommendation regarding how to treat this low bone density in a 29 female as oral bisphosphonates are only typically given over 5-10 years. That's really not going to help me at age 29. She let me know she had already faxed the reports to Dr. R and suggested I possibly see an endocrinologist who should help determine appropriate steps moving forward.

Interestingly, Dr. R referred me to an endocrinologist at BWH when I first started seeing him - one of the many specialists he's referred me too. He thought  my thyroid was slightly enlarged - but the ultrasound and all blood tests were normal. That was a little over three years ago.

Needless to say I'm really upset about this, especially since my PCP gave me a hard time about getting the test. Just makes me realize how important it is to advocate for yourself and fight for the tests that are needed. When I had asked Dr. R about a bone density test about a month ago he agreed that it would be an important test for me to have as a baseline.

I really thought my bone density would be normal. Can't I catch a break? Just not in my bones which apparently have me confused for an old lady! Ugh. When it rains, it pours sometimes.





The importance of bone density/DEXA scans: Study Suggests MGUS Patients Receive Inadequate Evaluation, Follow-Up, And Treatment

Monitoring MGUS should include DEXA scans: Monoclonal gammopathy of undetermined significance: a consensus statement

March for Myeloma

Well, March has quickly come and gone - March is multiple myeloma awareness month. Who knew? Not me. Until this year, that is. Last March multiple myeloma was the farthest thing from my mind and I definitely didn't know that March was the month designated for MM awareness. Of course I did know the basics of MGUS and how it relates to MM but definitely no where near as much as I know now.

The Boston MMRF Race for Research is coming up in a few short weeks! So far the myeloma mashers have raised $1000.00! If you would like to contribute to my team, please click here. :)

Also, someone posted this link from the IMF Advocacy Team a few weeks back. If you have time and are interested, click the link below and submit the email message to your state representative.

Federal Parity Bill Needs Your Voice


From the IMF:

IMF Advocacy Team - Federal Parity Bill Needs Your Voice

Email your state congressional representative today.

 

With your help last year we secured 53 co-sponsors for the Cancer Drug Coverage Parity Act of 2011 authored by Rep. Brian Higgins. A new congressional session starts every two years, which means we must ask those representatives who sponsored last year to recommit to standing up for myeloma patients.

Myeloma patients across the country need you to take action!
The sponsors of the Cancer Drug Coverage Parity Act are preparing to reintroduce their legislation in the new congressional session. We need you to reach out to your member of Congress to ask him or her to be an original co-sponsor to the bill. The more bipartisan original co-sponsors we have, the more likely the House will move to vote on the legislation. This bill will eliminate the disparity in insurance coverage and reimbursement between oral and intravenous cancer treatment.

Please enter your zip code below to email your congressional representative to ask him or her to support cancer patients today!

 

Thank you for your help ensuring all cancer patients have fair and equal access to all types of treatments!

 

In the empty box below, please write a few sentences that tells a personal story. Whether or not you have faced treatment inequalities, a personal statement of your support will help personalize this issue for legislators. You should include information such as status regarding myeloma (age, when diagnosed, health today, treatment needs.) If you are writing about someone else, please use only their first name and describe how you know them or their relation to you.

If unequal reimbursement has affected you or someone you know, please include your experience such as: I did not get the care I need because insurance reimbursed more for a different treatment; I have gone into debt to pay for what insurance doesn't cover; my treatment was delayed waiting for coverage to kick in.


[personal message]

I'm concerned that many insurance plans treat oral chemotherapy differently than other forms of chemotherapy. It just isn't fair for patients to have a much larger financial burden for oral forms of chemo, especially when many oral treatments don't have other alternatives. Patients, families and their medical providers should be making treatment decisions based on what's best for the patient, not because of the cost.

Please be an original co-sponsor to the Cancer Drug Coverage Parity Act so cancer patients have fair and equal access to all types of treatments. To co-sponsor, please contact Matt Fery in Rep. Higgins' office at matthew.fery@mail.house.gov. I hope that I can continue to count on your support and leadership. Thank you!