Tuesday, August 14, 2012

no ipi for me

Things rarely go as planned it seems in this business.  Luckily, I have been stretched so much this year, I am pretty flexible.  If I wasn't I might break on a day like today.

Yesterday 2 pm:  They took me off of the schedule for the IPI infusion.  The tests we were waiting for came back yesterday.  Neither with good results.  The biopsies taken in the colonoscopy showed inflammation and necrosis (is that what she said?) in the bowel.  The calprotectin (which measures inflammation in the bowel) is 7 times the normal limits.  I was very depressed. 

I try hard to plead my case for more IPI.  I am asymptomatic (no diarrhea), have been off steroids now for over a week, and most importantly...THE DRUG IS WORKING.

Yesterday 5 pm:  They put me back on the schedule for 12 today for the infusion, while they looked into the case more closely.  I hope all night.

Today 11 am:  I got the phone call that I will not be getting the infusion.  Too risky.  Bowel is being eaten up by my immune system.  If I understand it right, the normal flora it contains is being attacked by my immune system, which now has no limits.  The risk is eating it away so much I develop tears or holes in the colon.  We give IPI again to an angry immune system and in some cases, can't control it after that.

Still.  After the IPI, I am down to really one drug (the braf drugs).  And it's usually only effective for x amount of months.

Josh and I have had a hard time with this back-and-forth.  I prayed all morning that the right decision would be made.  I have to believe this is the right decision.

I have to now put this into perspective.  I have to trust that what happens after all I can do is in Bigger Hands.  I have to remember that although one dose may be all I get, it may be all I need.  I have to remember that I needed something to work fast with my brain involvement, and that is just what I got.  I have to believe that if my immune system is still attacking my colon, it is fighting the cancer too.  I understand that another dose or two would not necessarily cure me anyway, or help more than just one dose.  And another dose could do irreparable harm, could kill me faster than the cancer.

I cram these thoughts into my mind to keep other bad and depressing thoughts out. 

I have another dose of Temodar in a couple weeks, and then we look forward to the big scans come Sept. 12th.  Hoping, always hoping, for the best!

19 comments:

  1. Alisa we too are always hoping and praying for the best. You are all in our prayers and you are such an inspiration love Suzanne Campbell

    ReplyDelete
  2. You don't know me...but I follow your blog faithfully and am so amazed at your courage, strength & perspective. We will continue to hope (and pray) with you that the one dose of IPI is all that your body needed. You are such a great example to all those around you--even when it seems at the moment that your world is crumbling.

    ReplyDelete
  3. I am so proud of you for hanging in there.

    ReplyDelete
  4. We are hoping along with you and praying continually for you.

    ReplyDelete
  5. You don't know me either, but I also follow your blog and thank you for it. My 17-year-old niece (Madeleine) also has stage 4 melanoma that she is battling, which started with a simple "spizoid" type mole a little over a year ago - a mole that they weren't even sure was melanoma, but has now spread to her liver.
    I found your blog as I was searching to find blogs from people in a similar situation (I am very involved in her support and write a blog for her as well). Thank you again for sharing what you are going through, even the hard days like these, and for the help and insight that brings to others. I will be praying for you tonight as I pray for my niece.

    ReplyDelete
  6. This is most certainly in Bigger Hands. We'll be counting down the days until Sept 12th. (So glad it's not Sept 11th). It was good running into you last night. You looked amazing. All our prayers coming you way!

    ReplyDelete
  7. Waiting for a good scan in September! I think you have generated the longest consistent prayer focus I have ever had.

    ReplyDelete
  8. What a roller coaster! I hope they are right. And I hope that one dose is all you needed. I also hope that Josh has the best birthday ever this year.

    ReplyDelete
  9. Hang in there girlfriend. I think it's a lovely thought that maybe one dose of iPi is all you need. I think I'll think that lovely thought. Xo

    ReplyDelete
  10. I love your hope and tenacity. I'm still hoping and praying for you as well.

    ReplyDelete
  11. As always--constant prayers and god thoughts from the Epperson household to yours! Love you--Buffy & Brent

    ReplyDelete
  12. You're a rock star! Hang in there. Love ya!

    ReplyDelete
  13. Alisa, I've been lurking in the shadows...following your blog and looking at all the darling photos of your family. I have thought of our "good game" bum slapping days on the tennis court often. Now as I read about this trial in your life I am often brought to tears by your strength and courage, but mostly by the love you have for your darling boys. I am praying for you and have faith that one dose of that crazy stuff will totally work...cause your immune system is clearly as strong as you are! All oft thoughts and prayers are with you, josh and your darling boys.

    ReplyDelete
  14. Hope you fell better soon and that all the Cancer can go away for good

    ReplyDelete
  15. Yes, we are all hoping with you!!! Love you! You are in our thoughts and always in our prayers. I watched Anne of Green Gables last week with my sister who had never seen those blessed movies! I thought of you the whole time!! :) love ya, Stephanie Ingram

    ReplyDelete
  16. Love you Alisa. xoxoxoxoxox from here.

    ReplyDelete
  17. You are just amazing with your positive and hopeful attitude. That is all you can do is leave it to God. Just wondering though, have you looked into other clinical trials elsewhere? I know NCI does some very promising trials called Adoptive TIL therapy. I know some Stage 4 patients that have had complete responses with that and are still in remission. There are also trials going on combining the BRAF with the MEK inhibitors.

    Anyways, if you ever want to talk, let me know! I did a lot of research a couple years back and try to keep up on it (if it were to come back). I also went to several oncologists specializing in melanoma around the country. Just something to think about. :)

    Hugs and prayers,
    Christina

    ReplyDelete
  18. Hi Alisa,
    A friend told me about your blog and I've been catching up on your story. I'm sorry things aren't going as planned but pray for your future. I've added your blog to my list of melanoma bloggers (I'm stage 3b and also admin Melanoma Prayer Center on FB). You and your family are definitely held in prayer!
    Here's my They Dare To Care list:
    http://letsgivethanks.blogspot.com/2012/01/they-dare-to-care.html

    ReplyDelete