Sunday, March 16, 2014

6 months NED!!!!

Today is a bittersweet day for our family.  We found out this morning that one of our sweet melanoma friends lost her husband last night to melanoma after a long, hard battle.  Our melanoma family is a very tight knit community and every loss is like losing a family member....so heartbreaking. Today is also 6 months since Steve was given the news that he is NED.  Like I said, a bittersweet day, indeed.

Here is a picture of Melissa, Jeff and their precious babies....RIP Jeff.



Steve was diagnosed with Stage 4 metastatic melanoma in January of 2012.  At that time, he was given 6-9 months to live (this is the typical response from most doctors to melanoma patients when diagnosed).  Can you imagine at age 34 being told you were going to die?  Can you imagine at age 32 being told you are going to be a widow and single mom of 2?  I will never forget that day.  That moment.  After the general oncologist gave us the news, she walked out to give us some time alone.  We held each other and cried and cried and cried.  I spent at least a week crying.

After the initial shock wore off, I threw myself into melanoma research.  I read about melanoma, treatments, trials, read blogs, etc., every waking minute.  In February of 2012, Steve started a grueling round of biochemo at MD Anderson.  Following biochemo, Steve had a major, invasive surgery to remove an adrenal gland and large tumor that was attached to the adrenal gland and intertwined with the vena cava.  After recovering from surgery, Steve was treated with Zelboraf.  After experiencing debilitating side effects and being admitted to the hospital for 11 days with a mystery infection/illness, Steve was taken off of Zelboraf.  The next treatment Steve did was Yervoy (Ipilimumab).  Yervoy is 4 rounds of 90 minute infusions taken once every 3 weeks as outpatient.  Steve did very well on Yervoy.  He had little to no side effects.  And on September 16th, 2013 we got official word that Yervoy did it's job.  Steve is NED!



As we celebrate 6 months, NED, we have to be realistic to the fact that melanoma is a BEAST!  Melanoma can come back at any time.  We are thankful for the "normal" life we have been able to live the last 6-9 months.  During this time, we sold our home and built a new home.  We moved into our new home about 2 months ago.  We did not plan on building a new home for at least 5 more years, but we know we are on borrowed time and need to do anything and everything we want to do while we have the opportunity.



Steve's next scans are on March 30th with results the following day, March 31st.  We hope the results continue to show NED, but are always prepared to hear we need to fight again.  And if needed, that is exactly what we will do....fight again.  "Fall down 7 times, Stand up 8"


4 comments:

  1. SO GLAD Steve is OK, Melanoma is HORRIBLE and we are getting LOUD!!

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  2. Really great to read a story like this. My dad was just diagnosed with Melanoma. They havent mentioned a stage, prognosis, ect. He has surgery on the 25th. Theyll be removing the melanoma and taking a biopsy on his lymph nodes. Hoping and praying it hasnt spread.

    Keep up the fight, guys.

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  3. Hi. I just commented but don't know if it published. You should look up Indian Mud and Compound X on youtube and google. Also, AHCC. Both work. Good luck.

    ReplyDelete