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Getting back on my horse (figuratively. Still waiting for literally.).

I had a great appointment with Dr. Lao yesterday.  We have a new care plan that gives me hope and confidence!  Since the steroids are prohibiting me from getting immunotherapy right now, I am going to start the BRAF therapy again.  I did this in December, January and February when I was recovering from the spinal fusion surgery.  We had good results with it, and saw tumors shrinking.  BRAF is an oral pill therapy that I just take at home daily, no needles required, and fewer trips to Ann Arbor!  So I am thrilled to get back on the protocol, especially since that recent chest CT revealed new growth in my lungs (hence the shortness of breath that I experienced).  You might be thinking, why would I have stopped the BRAF protocol in February if it was being effective?  That's what I asked too.  It turns out that the BRAF protocol is only effective while it is being administered, as opposed to immunotherapy which can keep working for awhile after it is in your system even if you are not getting additional infusions.  Additionally, the body will reach a point with BRAF where the body gets saturated and the BRAF is no longer effective (there's a word for this that I am trying to remember but I can't quite think of it at the moment).  There is no way to know how long the BRAF will be effective for each individual.  So BRAF is like a bridge therapy, an effective short-term therapy,  perfect for my situation where I need a little more time to wean off these steroids.  The new care plan has me on BRAF for about three months and then we plan to restart immunotherapy, and we might go back to the two-drug infusion.  Dr. Lao said my case is very unique with all the changes and switches of therapy protocols, and we are in uncharted territory.  It is fascinating and scary all at the same time.  I am just thrilled to start the BRAF and attack these darn tumors!

About the pain-  if it is due to the radiation, then Dr. Lao expects that it will resolve in time as the body heals. If, however, the pain is from the melanoma, then there's not much to be done except manage the pain with meds as we are currently doing.  It is possible that if the BRAF shrinks tumors, the pain will decrease as well.  But there is no way to know right now whether we are dealing with radiation pain or melanoma pain.  I just have to wait it out and see.

I want to thank everyone for your kind responses to my previous post.  You have all been so supportive and understanding, I received so many messages and texts and calls and visits to lift me up in response to that post.  I really, really appreciate it because I was in a low spot.  The low spots seems to be coming a little more often so I am getting help with that too.  I don't feel like I am strong or brave or a fighter but I appreciate you all saying that I am.  Really I'm just a regular Joe doing what I have to do to keep moving, keep growing, keep living.  But I certainly couldn't do it without my friends and family!!  Love you!!!

Thank you a million bajillion times for being you!

Love,  

Molly

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Comments (17)

  • Bonnie Stanecki
    Bonnie Stanecki

    ❤️

    one year ago · Reply
  • Kim Kemper Parrish
    Kim Kemper Parrish

    Molly- I so admire you honesty and your fighting spirit. I can’t even begin to imagine all you are thinking, feeling and experiencing- and yet you always seem to rise above every challenge you face. Much love and healing strength to you dear friend ❤️❤️❤️

    one year ago · Reply
  • Erika Beauchamp
    Erika Beauchamp

    Made my year seeing your beautiful face and hearing your laugh! I want to come visit again soon! Be on the lookout for some Moroccan oil coming your way😘

    one year ago · Reply
  • Kelly McLouth
    Kelly McLouth

    ❤️ Heading up for July, definitely want to visit and will be nearby if you need anything! 😘

    one year ago · Reply
  • Lynne Yaverski
    Lynne Yaverski

    💕❤

    one year ago · Reply
  • Patti Yearn
    Patti Yearn

    ❤️❤️❤️

    one year ago · Reply
  • Jeanne Blasciuc
    Jeanne Blasciuc

    Love ya Bucc!

    one year ago · Reply
  • Mare S
    Mare S

    Love you Bucci Wucci! I pray for you daily and miss you - will be back soon will hit you up when I know when. Keep fighting my friend, We will be baby birding in no time!!! GOALS LOL!! XOXO

    one year ago · Reply
  • Kathy Borthwick
    Kathy Borthwick

    Much love and lots of prayers Molly 😘❤️

    one year ago · Reply
  • Molly Bosco OConnor
    Molly Bosco OConnor

    Molly you are the true meaning of strength, bravery and a warrior! Sometimes we need to show our less confident or vulnerable side to gain the power to move forward in a better position. Your honesty and openness show how incredible you are. Thank you for letting people support you through it all. I’m thrilled to hear you have this interim treatment plan that has given so much positivity in the past! So many prayers for continued success with this treatment so the immunotherapy can have a head start when your ready for it!!! Keep fighting and looking forward to better days!!!!! I love you so much Bucci! I hope to see your smile and hear your laugh very soon!!!! LKH!!!!

    one year ago · Reply
  • Kristin Maceroni
    Kristin Maceroni

    So glad you have a plan to get things rocking and rolling again. I cannot begin to imagine how difficult it must be to stay positive when all these curve balls keep getting thrown your way. I continue to keep you in my prayers and am still working on making a visit to see you happen. You work on healing and getting to that Kentucky horse show in July! Hugs! Aunt Fritza

    one year ago · Reply
  • Michelle Lundquist
    Michelle Lundquist

    I agree with other posters regarding your honesty. It's amazing to see all the wonderful things that science is able to do! I love that you keep searching and working through each roadblock! I am in awe of your dedication to get well, the support of your doctors and the support of everyone around you. You've shown a light on a typically non-spoken subject. You should really think about writing a book, it would be very inspirational and I think many would find comfort in your words. AMAZING!!!

    one year ago · Reply
  • Amy haneline
    Amy haneline

    Has anyone ever told you that you're an amazing writer? Well you are. Funny, descriptive, honest, open. I love you. Thank you so much for including us with these updates. It's helpful to understand just what you're facing and the strategies being used to combat them. I hope the BRAF, BARF, BAMF...I forget helps shrink those damn tumors and make your pain easier to manage. I wish I could kiss those sweet chippy cheeks right now. Love you Bucc....and by the way, like I promised, I had my skin cancer screening this week in your honor. Muah!!! ~Mat

    one year ago · Reply
  • Cathy Peterson
    Cathy Peterson

    Regular Joes are the winners!! Keep squishing the challenges Bucci! You are strong, you are brave and you will succeed!! And...we are all behind you!! Prayers up!! LKH ❤️

    one year ago · Reply
  • Mary Christine Reed
    Mary Christine Reed

    Molly, thank you for passing on all this information. When so much seems out of anyone's control, the little details can make it a bit more tangible. I hope you continue to feel the support your family and friends are sending from around the country.

    one year ago · Reply
  • Katherine Baldini
    Katherine Baldini

    I'm glad you are you! You are one of the funniest! Cheering for you, Bucci! (And I can't wait til you get back on your horses literally, too) Lots of love xoxo Catto

    one year ago · Reply
  • Jennie
    Jennie

    Today is a day to celebrate braveness. You are the bravest person I know. Thinking of you and your family often and hoping that BRAF therapy is doing its job!. Happy 4th of July. Sharp Family

    one year ago · Reply

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