Thursday, January 31, 2013

Yippie for Ipi!!

Yesterday and today Steve had CT scans.  Yesterday of his abdominal/pelvic region and today of his neck.  He was not scheduled to have scans until 3-4 weeks after his last Yervoy (Ipilimumab aka Ipi).
We were taken a little off guard when we looked at his schedule and saw that he had scans on his appointment list for this week.  I spoke with the nurse and PA who both agreed it must be a mistake because when on Ipi scans are not done till 3-4 weeks after the last infusion.  They were going to cancel the scans but of course double checked with the doctor first.  The doctor did indeed want the scans done.  I was very confused and worried as to why he wanted these middle of treatment scans when that is not protocol.  As a matter of fact, I could not find one person who had completed Ipi that had middle of treatment scans. 

Steve waiting to get called back for his scans

We saw the doctor this afternoon and we asked why the scans?  He said since Steve's body acted so crazy back in November, he just wanted to be sure that the Ipi was working and that melanoma wasn't sitting there spreading like wildfire.  Yay for a caring doctor that worries about these types of things even though it is not standard protocol. 

The results?  Great!  The clavicular lymph node has shrunk by about 50% (or more - the final report was not ready) and also the few lung nodules he has shrank by 50% or more also!  And BEST of all, NO NEW DISEASE!!!  Yippie for Ipi :)  I stole that from someone and I don't know who.  But I like the sound of it! 

Dinner after results and before 3rd round of Ipi

Steve has his 3rd infusion of Ipi tonight.  We are currently in the waiting room waiting to be called back.  In 3 more weeks he will have the final infusion and then 3-4 weeks after that he will have more scans to see the end result of the Ipi treatment.  I say 50% complete with treatment and tumors are 50% smaller, well that must mean that after the other 50% of treatment the tumors will be gone!!!  (Yes, I know that is not how it works, but that is the plan!!)

Despite Steve's great news today, we have had a very depressing day.  Back in September, Steven and I were invited to attend the Moon Shots announcement at MD Anderson.  We met Brian Rose and his wife, Lupe.  Steve was instantly inspired by Brian.  Brian had the most positive outlook, they were about the same age, and Brian was fighting this disease head on.  When Steve was in the hospital having some problems, Lupe would message me on Facebook to check on me.  They were both just very inspiring to us both.  This morning, Brian Rose passed away.  We were sitting in the lobby waiting for Steve to get called back for his CT scan when we saw the news on Facebook.  I was stunned.  I pointed to the computer and we were both just silent.  Both of our eyes instantly filled with tears.  We have both battled the tears all day.  RIP Brian.   


  1. First of all, WOOOOOOOOOOOOOOOOOOOOOOOOOOO HOOOOOOOOOOOOOOOOOOOO about Steve's great news! I am so THRILLED for you guys! I pray that Ipi will continue to work its magic.

    I'm reading about Brian now. What an inspiring guy. It isn't easy when one of our cancer friends passes...especially one we've had the honor of really getting to know and meet in person. Your heart breaks for that person, your heart breaks for their family, and if you're like I am, you feel survivors guilt. Sigh. Despite the risk of losing friends, I wouldn't give up my melanoma buddies for anything!

    Sending love to you guys! :-) :-)

  2. Oh Chelsea, Brian and Lupe were both truly so inspiring. And they were sooooo in love. It is heart breaking knowing that Lupe lost her soul mate. I have survivors guilt for sure. I hated to even post Steve's CT results. But like you said, I would not give up all of the relationships we have built over the last year for anything!!!

    Love you back Chelsea!

  3. GREAT news!!!! Prayers are being answered and we will continue to pray for complete healing for Steven and prayers for the continued great care he is receiving from MD Anderson. Very sorry to hear of the loss of your friend, Brian. Let us know if you need anything--we love you guys!! (Hope to see you'll soon)
    Love, Uncle Tim

    1. Thank you, Uncle Tim! It was great news indeed. Shrinkage of the tumors and no new disease. We could not have asked for anything better from the reports!

      Love you guys!

  4. Jennifer I am so glad to hear the great news about Steven. I read about Brian yesterday and that is so sad. Yall have met some very couragious people along the way. The support system and friendships is very inspiring as well. - Nadia

    1. Thanks Nadia! Yes, we have an AWESOME support system. We haven't met 95% of them in person, but it doesn't matter a bit. They are all just like family.

  5. How is your husband doing.....I am going through this also with my husband....waiting for the pet scan to see what has happened. IPI plays some strange reactions and boy have we been through it. I would love to correspond with you.

    my personal email is: