Genetic Testing Results, Heart Echo Test, Latest Chemo Eve Present

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Sorry I’ve been a slacker on the blog posts lately.  There hasn’t really been anything to update everyone on though since I’ve been feeling great.  I’ve had a couple of doctor appointments recently though so I thought I’d update everyone on that, and a couple other things.

Genetic Counseling

I found out my genetic counseling results today.  Mom came with me.  I don’t think I’ve written about this before so I’ll give a little background first.  I initially met with the genetic counselor about a month ago.  I completed a very long family history questionnaire and they ran some blood work for the genetic testing, which they sent off to Utah, the only place in the country that performs the testing.  After reviewing my family history forms, the genetic counselor said she didn’t think my breast cancer was hereditary since we have no family history of it, at least not close (i.e., up to grandparents).  Surprisingly, only 10% of breast cancers are hereditary.  The other 90% is caused from other factors, which aren’t really known but may include environmental factors, fertility drugs, etc.

There are two breast cancer genes, breast cancer gene 1 (BRCA1) and breast cancer gene 2 (BRCA2).  Everyone has these genes.  What they look for in the genetic testing are mutations in the genes.  Mutations in BRCA1 and BRCA2 cause most cases of hereditary breast and ovarian cancer.  If mutations are found, it would change my surgery plans and have implications for others in my family.  For example, if a mutation is found that has a known link to breast and ovarian cancer, they would suggest a double mastectomy instead of a single mastectomy (my current surgery plans) and the removal of my ovaries by the time I’m 40 (not in my surgery plans).  It would also mean that my sisters or other female relatives may want to consider the same surgeries as preventative measures.  There are thousands of mutations that are known to have a direct link with breast and ovarian cancer.  There are other mutations that don’t have a link with breast and ovarian cancer, and other mutations they are not sure about.

My results came back with no mutations in the BRCA2 gene, however they did find a mutation in my BRCA1 gene.  Although it’s not one of the thousands of mutations that have a known link with breast and ovarian cancer and is instead one of those mutations they are not sure about.  Out of the 1.3 million people in the US that have undergone the BRCA1/BRCA2 genetic testing, only 4 other people have the same mutation as me.  Therefore there isn’t enough history or research at this point in time to indicate whether there is a link with breast and ovarian cancer or not.  They have only been performing this genetic testing since 1994. 

So the news today was good and bad.  The good news is I don’t have any of the known mutations with a link to breast and ovarian cancer.  But the bad news is that there was a mutation, which they don’t know much about.  So what does this mean?  They said they wouldn’t make a recommendation either way and that I have to decide on my own what I want to do.  I have my next big chemo round this Wednesday and a follow up appointment with Dr. Limentani and we’ll ask his opinion then, but since there are only 4 other people in the whole country with the same issue, he may not have a solid recommendation.  I’ll probably opt to keep my surgery plans as is but I have until the end of July to decide.  The reason they recommend a double mastectomy for people with mutations in their BRCA1 or BRCA2 genes is because there is a much higher risk for re-occurrence. 

The mutations that they don’t know much about are referred to as “genetic variants of uncertain significance”.  There are ongoing efforts at the genetic testing center in Utah about these types of mutations and their link with breast and ovarian cancer.  As new information becomes available, they will notify my genetic counselor and they will in turn notify me. 

Herceptin / Heart Echo Test

I also had another appointment on Friday for my second heart echo test.  The Herceptin treatment that I receive every Wednesday can cause heart problems, including reduced heart function, congestive heart failure, inadequate blood supply to the heart, inability to pump blood effectively, irregular heartbeats, high blood pressure, disabling heart failure, weakening of the heart muscle, and sudden loss of heart function.  These risks are higher when Herceptin is given in conjunction with another certain type of chemotherapy called Anthracycline, which I’m not on, but they test for the heart problems no matter what.  I did some research and for my particular treatment regimen (Herceptin with Taxotere and Carboplatin), I found a trial that showed only 2.9% of patients with my same regimen had to stop using Herceptin due to heart damage. 

They test my blood pressure and pulse every week and there haven’t been any signs to cause alarm, but they do the heart echo tests throughout treatment just in case and to do more thorough testing.

Some other quick facts on Herceptin:  The most common side effects associated with Herceptin are fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, shortness of breath, rash, low white and red blood cells, and muscle pain.   The only side effect I’ve had from the Herceptin is low white blood cells, so that’s very good.  The white cells are the ones that fight off infections as part of your immune system.  But aside from getting sore throats occasionally and getting sick during that first round, I’ve been fine and haven’t noticed the low white blood counts myself. 

Anyway, they performed my first heart echo test on March 31, the day before I started treatment, and just did the second one this past Friday.   I should have the results by Wednesday but I’m not concerned so no worries.

Latest Chemo Eve Present

So, Nina started a lovely tradition right before my first chemo round, which has made things a little more fun.  She comes over every third Tuesday, the night before my big chemo rounds, or what we call “Chemo Eve”.  Each Chemo Eve, Nina, one of my chemomaids of honor, gives me a Chemo Eve present.  I invented the term “Chemo Maids” in the beginning of my treatment as well.  A chemomaid is like a bridesmaid but does nice things for me during my chemo treatments, such as cooking meals, doing me favors, going with me to my treatments, etc.  I’ve had a lot of chemo maids over the course of my treatment.  😉  It’s just been something fun and silly. 

Anyway, I’ve gone a little farther with the concept and have started giving myself Chemo Eve presents as well.  My initial gifts to myself were a pair of Coach sunglasses, a new Coach purse, etc.  Well this chemo round, I bought myself a new car!  It’s a Lexus SC 430 convertible and super fun!  I have told myself that this is not just an ordinary Chemo Eve present, it’s also a present to myself for not being able to get pregnant until I’m 35, which to me is justification enough.  Anyway, here’s a pic of my new car!  Well it’s only new to me, it’s actually a certified pre-owned. 

new car 1

new car 2
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28 Responses to “Genetic Testing Results, Heart Echo Test, Latest Chemo Eve Present”

  1. Kelly Says:

    YOUR CAR IS GORGEOUS!!!!!!! Perfect for the summer time, and very deserved 🙂 🙂
    Love you! Hang in there!!!

  2. vicki cunningham Says:

    So glad that the tests came back positive and you are staying on track with your surgery plans – car is well deserved and just beautiful – you definitely take after your dad!

  3. Mom Says:

    I’ve been waiting for you to post an update on today’s appointment, so I can more fully understand what we heard today. You are so smart!! I wonder who you get that from!! Your new car is beautiful, just like you, and very well deserved. Love you, love you, love you!
    Mom

    • Danielle Kragnes Murray Says:

      Thanks Mom, I love you, love you, love you too!! I’m so glad you were there with me today! I love you so much and appreciate you every day!!

  4. Carol Lambert Says:

    Glad you got the results back and it just goes to show you how special you are… 1 of 4 known cases. Those seem pretty slim odds to me, so I’ll take that as good news! Love the car too. I agree with Vicki, you must take after your Dad with the car thing. When I saw the pictures I thought, she got a Saab convertible like Dan, but then I scrolled back up and saw it was a Lexus.

    I’ll be praying that this chemo round is a good one. I love the idea of Chemomaids. You’ll have to mention it on your Dr. Oz show… you might start a new trend.

    • Danielle Kragnes Murray Says:

      Thanks Carol! Yeah, my car was in the driveway when my dad pulled up last night from his golf trip. He was like whose car is that? He was surprised when I said mine but then again he wasn’t that surprised, ha.

      Thanks, I actually like my chemo-maids idea myself! 😉

  5. janelle Says:

    Hottt car for a hottt LP! I can’t wait to ride around “with the rag top down so my hair can blow…” name that tune!!! Anyone, anyone? Love you sweet friend.

  6. lori kragnes Says:

    awwww, gf, you freakin rock, i love your attitude and your amazing writing skills too.lol…anyways, loved this blog, it made me cry though gotta be honest….i having withdraws from you and its only been a week…one of these days i will be down for chemo eve, since i’m one of the maids…..i’ll be praying for you this week and i love the car….tell brother dan he must be proud of his girlie….love you sweetie….your very special…..

    • Danielle Kragnes Murray Says:

      Awe, Aunt Lori, you are so sweet! I’m having Aunt Nori withdrawal too! I’ll see ya though in just a few weeks for Nina’s wedding. Yay!! Love you!

  7. Becky Says:

    So glad to hear that you’re still feeling well! Good news about your tests too! I think you really could trademark the name “chemo maids” that is so cute and such a good idea! Wish I was there and was one of them:(
    I love your car, it looks like you. Hope you’ve been having fun driving it!!

    • Danielle Kragnes Murray Says:

      Thanks Becky! 🙂 Yeah, I’ll have to look into trademarking the chemo maids, ha! That and the wiggie polls. 😉 Miss you! We’ll make a plan soon!

  8. Kelly Says:

    Janelle – Is it “Ice Ice Baby”???????? Did I win????

    • Janelle Says:

      Ding, Ding, Ding, DING! We have a winner!!!! yes, ladies and gents…I was draggin’ out some old school Vanilla Ice -CONGRATS to the Chemo-bride Kelly!

  9. Heather Puljung Says:

    LOOOOVE IT! 🙂

  10. Kelly Says:

    WOO HOO!!!! Love ya Janelle!! 🙂 🙂
    Let’s have a girls weekend and prance around in D’s new ride 🙂
    D – I sent you a surprise… you should get it tomorrow… It is sooo “Danielle and Kelly LIKE”… love u!

    • Danielle Kragnes Murray Says:

      Kelly, you shouldn’t be sending me anything, it’s YOUR bday week! Your present will be late but it’s coming, don’t worry. Happy birthday week!!!! Love you, miss you! (I see you like the smiley faces as much as me, ha!) 🙂 😀 😉

  11. Norine Says:

    Oh my goodness…a girl after my own heart! Love your car…enjoy. We love cars, and are always happy when someone gets something spiffy! You certainly deserve it–especially for being so brave thorough all of your treatments!

    Best wishes dear…also hugs to your mom!
    Norine

  12. Amber~ "Aunt" Lori's Friend Says:

    Hey Girlie!!! It was so nice to meet you in vegas! you are such an inspiration and wonderful person! Lori always forwards me the blog link and I read it. I wish you the best and am praying for you!

    xo

    Amber

    PS congrats on the gift!!!! woooohoooo you will have fun driving that around for sure!

    • Danielle Kragnes Murray Says:

      Hey Amber!! It was so nice to meet you too!! Vegas was so much fun, I can’t wait to go back! Thanks for reading my blog, you’re sweet. Hope to see you again in Vegas sometime soon!

  13. Kori Says:

    Love, LOVE the new car…congrats lady, you deserve it!!!! 🙂

  14. lori kragnes Says:

    good luck today sweetie…just keep thinkin of your ride and your day will be over soon…I’ll be prayin for yah today..love u!!!!!!!!!!


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