In

I’m writing this blog post on my phone, so it will be a short one. I just wanted to let everyone know that after what felt like an eternity, I am IN!  I am about to start the clinical trial of which I wrote in my last post. There were so many hurdles to jump through that I felt like I might fall with every step and then be excluded from this oh-so promising study. The mental anguish and stress resulting therefrom, combined with my increasing pain, was at times almost unbearable. In more than 3.5 years of living with this disease, I have never known such anxiety and stress. I say that without an ounce of exaggeration. 

Signing the consent, which I did on February 10, was not an automatic ticket in (as was the case with my last trial). At the most fundamental level, my cancer tissue had to be shown to express a threshold amount of CEA. One of the trial drugs attaches itself to CEA. So MSK secured tissue from my bilateral oopherectomy at NYU and sent that to the trial’s sponsor for testing.  My blood serum expresses very little CEA (less than 50) compared to many people with CRC (hundreds and thousands).  To address my worry, I started researching the correlation in tissue versus serum expression of CEA, trying to find whatever I could to reassure myself.  The results finally came back last Friday indicating that my tissue was positive for CEA. 

Next were the scans. Last week I had 4 scans in the span of 5 days. That must be some kind of world record. I had my usual chest CT and an abdominal and pelvic MRI. I then had to have a PET as per the requirements of the study. The biopsy would need to be taken from an FDG-positive site, something only a PET could indicate. The scans all showed more progression, which was not surprising based on the increasing pain, but what was surprising and upsetting was a bone met in my thoracic spine, at T1. T1 is close to my spinal cord, which means the cancer is that much closer to my brain. Plus, the trial has an exclusion for any active or untreated metastasis of the central nervous system. Could a met on my vertebra that was penetrating into the outer reaches of the epidural space exclude me?  For 24 hours I agonized. I wanted to scream!  So close and yet so far. Last Friday, my MSK oncologist ordered a thoracic MRI to take a closer look at the bone met. I would not be excluded but they had to make sure the met, when it became inflamed from the immunotherapy, would not hit my spinal cord and cause horrible palm. If it would, I would need radiation immediately and the trial would have to be delayed. Fortunately, the MRI showed that the tumor had to grow by 50% before it would hit my spinal cord, and so would not be an issue. Odd what I feel relieved by these days. 

Yesterday, I underwent the required biopsy. It went as smoothly as I could have wanted (unlike the horrid lung biopsy for the last trial). The tumor I can feel right next to my belly button was a nice juicy and easy target. 

So after another EKG and blood work today and meeting the oncologist in charge of this trial, I made my way over to the hospital to be admitted. I will receive my first infusion tomorrow and will be here for two nights   I expect to be feverish and have pain as my immune system gets revved up. I am told that there are people who have responded really well to this trial — I know some of those people — and people who have not responded. And they have no idea why. I find myself wanting so very much to fall into the first category. I don’t think I’ve ever wanted anything more. I’m excited but scared and cynical and jaded  

In these last few weeks of pain and anguish, I have felt especially alone in this journey, as everyone continues in the normalcy of his or her life.  In my desperate longing to live, I am again humbly asking you to stop in the midst of your enviable normal living and spare me a thought or a prayer. 

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31 Comments (+add yours?)

  1. courtney
    Mar 07, 2017 @ 19:09:39

    Julie, I have the chills as I read this because I literally was moved to send you an email…which you can read. Just as I pressed send this post popped into my inbox. I am praying for you. I am so happy that you are in and I’m sure so many others are praying as well. xoxo

    Reply

  2. David Becker
    Mar 07, 2017 @ 20:20:39

    I have been thinking of you and hoping. Extra hard now. It looks like there is real reason to hope.

    Reply

  3. Jeffrey Jordan
    Mar 07, 2017 @ 20:29:07

    Prayers indeed!!!! I’m so happy you are in and wish you results beyond your hopes and dreams!!!!!!!

    Reply

  4. Julie mohr
    Mar 07, 2017 @ 20:58:02

    I have been fallowing you and like you I started my trial this week , had my pelvis biopsy today , and many on last Monday , I have reoccurring cervical cancer , I don’t know which arm of the study I will get yet , but I start march 20 , Your in my thoughts

    Reply

  5. Katie
    Mar 07, 2017 @ 21:05:33

    Good vibes, love, and light headed your way!

    Reply

  6. Janie Davis
    Mar 07, 2017 @ 21:58:17

    Prayers and positive thoughts, coming your way.
    So glad this came through for you, Julie.
    Sending love.

    Reply

  7. Lana
    Mar 07, 2017 @ 21:59:48

    Good luck, I am praying for you.

    Reply

  8. Paul
    Mar 07, 2017 @ 22:06:07

    Don’t know how you do it. Rooting hard!

    Reply

  9. mgennic
    Mar 07, 2017 @ 22:07:51

    Massages. Celebratory. This weekend. I’m going to book Sunday! What time do you want?

    All the best, Meredith

    Reply

  10. milana2983hotmailcom
    Mar 07, 2017 @ 22:12:38

    Dear Lord, please send Julie peace…and lots of killer T-cells and such. Thinking of you lots. -AJ

    Reply

  11. Joanne LaGrega
    Mar 07, 2017 @ 23:13:37

    Sweet Julie, storming Heaven with prayers for you and sending hugs and love.

    Reply

  12. Bridgit Mitchell
    Mar 07, 2017 @ 23:41:53

    Praying for you and your family.

    Reply

  13. Mirna
    Mar 08, 2017 @ 00:29:47

    thinking of you and wishing you all the best

    Reply

  14. Valerie Barkus Kantner
    Mar 08, 2017 @ 01:26:59

    Many, many positive thoughts for you, Julie. You are an amazing woman faced with an unfathomable challenge. I’ll be sending good vibes all day to you..

    Reply

  15. Kristin Lossius
    Mar 08, 2017 @ 04:40:55

    Your blog has meant a lot to me. I wish you success with all my heart.

    Reply

  16. Judee Mulvey
    Mar 08, 2017 @ 09:31:09

    XOXO

    Reply

  17. Tyler Burton
    Mar 08, 2017 @ 09:43:10

    Thinking of you!!! I hope the fever and pain are not too outrageous. So excited for this trial. Zap those bad cells!

    Reply

  18. Anne Marie
    Mar 08, 2017 @ 11:19:56

    Sending lots of love and hope and strength!

    Reply

  19. Masha
    Mar 08, 2017 @ 13:08:42

    You don’t know me even though we are former colleagues. I have been following your journey and will keep you in my prayers.

    Reply

  20. Ingga Ong
    Mar 09, 2017 @ 00:34:36

    Hi Julie,
    You articulate your feelings so well. I grew up in the Monterey Park/Alhambra area in the 70’s. Graduated from your cross town rival Alhambra High School. So so so proud to see your education taking you to places only one dreams about. So proud that you keep the good fight alive since you are young, immigrating to the US fighting for your freedom. You have shown the world that you can do it with such resilience and strength. You have made your parents and community so proud.
    Please know that you are never alone as in the Psalm 46:10 that says “Be still and know that i am God”. God is always with you, and he will never ever ever leave you.
    I will be praying that you will respond well to the clinical trial.
    Sincerely, ingga

    Reply

  21. Tina
    Mar 09, 2017 @ 01:00:30

    Hi Julie,
    As I saw the pics of your restaurant quality food and cooking gadgets on FB,i briefly forgot about the inner anguish and torment you daily live with.I had no idea about the countless MRI’S,PET & CAT scans,doctor appointments,medications,terrible side effects,weighty decisions regarding treatment,severe pain,fatigue that have become a daily part of your life.How can a person possibly go through so much and still live life to the fullest like you do, with you making your home perfect for your kids to grow up in,cooking up exquisite meals even kids lunchboxes,writing heartfelt meaningful words in this blog,beaming proudly at your daughter’s recital.I can only conclude it is your love so deep and powerful for your daughters and family that accomplishes all this.As you start this new treatment my best wishes are with you and your family.Whenever you are feeling low, we are here,if you need to vent!

    Reply

  22. Jeanine
    Mar 09, 2017 @ 10:30:25

    Julie,

    You have my prayers! So happy to hear this news. Positive vibes and lots of prayers ❤

    Reply

  23. Laura
    Mar 09, 2017 @ 19:24:48

    Julie, wishing you a successful treatment! I have high hopes for this one.
    I understand what you are going through even though my story isn’t exactly like yours.

    xx

    Reply

  24. Wendy Gill
    Mar 09, 2017 @ 20:28:52

    Julie. I want to let you know I prayed for you tonight. By now you will be spending your second night at the hospital for observation after your infusion. I have the same diagnosis with mets to liver and lungs. I was diagnosed a year after you. At this point folfiri and avastin still work to control my mets. I’ve followed your blog since my diagnosis. Thank you for sharing your life with all of us. I don’t feel so alone on my journey. I’m thinking and praying for you for that cure. You are so close:)

    Reply

  25. Rebecca Wu
    Mar 10, 2017 @ 03:24:01

    All the best, Julie! God, please be with Julie and heal her with your hand.

    Reply

  26. Joan Bardee
    Mar 10, 2017 @ 17:38:34

    Praying that the experiment is successful.

    Reply

  27. Curtis and Lisa
    Mar 11, 2017 @ 07:39:06

    Julie, we are thinking of you and praying for you. We’ve been following your blog from the beginning but never commented until now- but we (like many others, we imagine) are rooting so hard for you and have been from the very beginning!! Stay strong!!

    Reply

  28. Won
    Mar 20, 2017 @ 18:14:10

    Best wishes!

    Reply

  29. shanbrock6
    Mar 20, 2017 @ 20:54:43

    Hi Julie, wishing the very very best for you and praying that this trial will prove your cure, I am a few months behind you and want to thank you for sharing your story and blazing the way for the rest of us, this has got to work!!

    Reply

  30. Emily Cooke
    Mar 29, 2017 @ 12:40:16

    Go Julie Go!!!!!!!!

    Reply

  31. Lilly Wang
    May 10, 2017 @ 21:26:33

    Best wishes for positive healing and negative results on scans. I am having similar trials, fears, pains, and struggles with my current clinical trial at NIH. I am so glad to hear of the most recent improvement on PET CT

    Reply

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