I feel like I can take a breath now, at least for another few days. I have room to twist and move under the constant threat of Death.  I can conceive of living beyond June.  This has been true for two weeks, since I received the results of my PET scan, performed five weeks after my first infusion of my current trial protocol.  I guess the forces of Fortune, Life and Good won that particular mini-battle over the Forces of Misfortune, Death and Evil.  That’s right – I actually have good news – good scan results to be specific – for a change.  Are you shocked?  I certainly was.  I don’t remember the last time I had good scan results.  I certainly haven’t had shrinkage in any scan EVER (I disregard one and two millimeter reductions as within the margin of error and, to me, such small reductions are for all intents and purposes, considered stable disease).

Before I get carried away and get your hopes up, technically, the scans were “mixed”, meaning there were areas of growth as well as areas of shrinkage. When Dr. S, tall and gangly in all his academic nerdiness and seriousness, came in and without any agonizing prelude told me my scans were “mixed”, I took that to mean essentially stability.  In the one or two times I’ve had “mixed” scan results, there was a millimeter of shrinkage here and a millimeter of increase here, nothing terribly exciting and essentially neutral.  In truth, neutrality was what Josh and I were thinking would be the best we could hope for.  I’ve come to reluctantly accept that a stable scan is a “good” scan.  But as Dr. S began to elaborate – a lung met previously measuring 1.0 cm x 1.2 cm, is now 0.5 cm x 0.5 cm, one of the two liver lesions has completely resolved and the other one had nearly completely resolved – I interrupted him.  “But these are dramatic reductions!”  There were other dramatic reductions in tumor size and activity level, some by 30% and more.  But then there were also increases, some of them also be 30% and more, but it certainly didn’t seem like there were overall more increases than decreases..  “What do you make of these increases?” I asked Dr. S.  He said, he didn’t know what to make of the increases, that they could be inflamed tumors (a natural response to the immunotherapy), that it was still early days in the trial, and that we should be encouraged that my tumors had indeed responded to the protocol.  “So, this is good?” I prompted Dr. S, afraid to believe.  “Yes, these are really good scan results,” and there was the smile from Dr. S, the barely contained excitement bubbling just underneath the geeky exterior of this consummate scientist who had no doubt seen so much disappointment and yet still found the optimism to go on.

The day I checked into the hospital for the first infusion, the trial nurse asked me extensive questions about my pain level to establish a baseline. I had two distinct areas of pain, but it seemed like every day a new area of pain was popping up.  One was the tumor to the right of my belly button; it burned almost all the time by then.  It was also the site of the biopsy.  So, I knew for certain that it was tumor pain.  The second was around my diaphragm, a sharp pain when I took a deep breath.  Dr. V told me it was likely caused by one of my liver lesions (albeit still relatively small at around two centimeters) pressing against the diaphragm.  I was taking pain pills about once a day or once every other day, and I rated my overall pain to be a 4 on a scale of 1 to 10.  There was pain elsewhere, in my shoulders (which I thought might be referred pain from my liver), lower right abdominal pain, but I could not attribute that pain with certainty to the cancer. Overall, I did not feel well.  The pain had gotten progressively and quickly worse over the preceding few weeks.  My CEA, which I would not know until after the trial started, confirmed this.  A month before the trial started, it was 37.  At diagnosis it was 53.  During most of the last 3.75 years, it has hovered in the teens and 20s.  The day I started the trial, it was 87.7.

As I reported in my previous post, the first infusion brought on intense, unbelievable pain as the tumors flared. But what I didn’t tell people generally, other than a few members of my family, friends and my medical team, was that after that painful flare, the pain I had felt before the trial started for the most part disappeared.  I could breathe without pain.  The abdominal pain came only if I coughed.  I was afraid to hope that the drugs might actually be doing something.

The PET was performed in advance of and for my second biopsy, which was last Monday. The interventional radiologist, as is customary, went after the same tumor that had been biopsied right before the trial started, the one next to my belly button.  Researchers want to know how the trial drugs have changed a tumor.  I knew from the PET scan report that the SUV activity level of that particular tumor (i.e., how much it lit up on the scan) had dropped from a 6.3 to a 2.7, but no measurements were provided so I didn’t actually know if the tumor had shrunk.  The interventional radiologist told me that the tumor was “tiny” now.  Music to my ears!

Then last Friday, at my 7th infusion, my CEA was tested for the first time since the first day of the trial.  It was 25.  It had dropped in six weeks from 87.7 to 25.  I was in shock.

The official scans, the ones by which my status on the trial will be formally determined, is next week – a thoracic MRI to look at that troublesome bone met (which was essentially stable on the PET), a chest CT and a pelvic and abdominal MRI. Those scans will tell the real story.  We all expect them to be consistent with the PET, but I assume nothing.  The durability of this protocol is a big question.  One person I know did well on this trial for seven month, at which point his cancer progressed.  There also seems to be, based on my limited information gleaned from discussions in online support groups, a tendency for the drugs not to work on all the tumors, so for there to be “escapist” tumors which are then treated in some other manner, such as with radiation.

It is still early days in the trial and things can change in a heartbeat. I will say that I am really relieved about the liver lesions resolving or nearly resolving.  An overwhelming majority of patients who die from colorectal cancer die from liver failure.  Many can live a long time with lung mets because those mets tends to be slow-growing, but the liver is an area of real concern.  So to the extent I can keep my liver clean, this will improve my prognosis.

So for now, I’m taking lots of deep breaths.

19 Comments (+add yours?)

  1. Rebecca Wu
    Apr 28, 2017 @ 01:49:05

    Hi Julie, I am in tears after reading this exciting and hopeful post. I had been checking my email to see if you posted an update. And, finally! So so happy for you. I will continue to pray for you. This will work!

    May I know the name of the trial? I mentioned your blog to my oncologist. He was interested to know. The shrinkage sounds amazing.


    • julielyyip
      Apr 28, 2017 @ 09:01:43

      Hi Rebecca. It’s NCT02650713. Good luck and thank you for all the support!


      • Rebecca Wu
        May 02, 2017 @ 01:41:22

        Thank you for sharing the clinical trial info. I wonder if you have used Stivarga and Lonsurf. I don’t recall reading it in your blogs. My Erbitux has just failed after 1 year and 6 months. Stivarga and Lonsurf are my next options. And, I visited your trial’s webpage. It says that the trial will end in March, 2018. Does it mean that the drug, if proven effective, will be available after FDA’s approval? From what you described, it sounds like a promising new drug (hope) for colon cancer patients.

  2. Victor Chiu
    Apr 28, 2017 @ 03:15:08

    Wonderful wonderful news Julie! Keep us posted on the MRI results!


  3. Laura
    Apr 28, 2017 @ 05:06:14

    Oh my god! Wonderful news!!! I am
    so happy for you and cheering for you!


  4. Sue Steele-Theeck
    Apr 28, 2017 @ 06:53:25

    It sounds as if this trial is giving you hope ..and that is awesome!!!! im hoping the scans continue to show improvement and your pain is lessened❤!!!


  5. Vivien
    Apr 28, 2017 @ 07:49:14

    ‘Yes, these are really good scan results ‘. As a colorectal cancer patient myself, I know only too well how it feels to hear this. Sending prayers and positive thoughts for your upcoming scans!


  6. Stephanie Hoaglund
    Apr 28, 2017 @ 08:48:21

    Hopeful news! Here’s to continued improvements…


  7. Sarah Gonzalez
    Apr 28, 2017 @ 09:08:17

    This made my day!!!! Yay. So happy for you!


  8. Paul
    Apr 28, 2017 @ 10:31:09

    Yea Julie!
    Keep going. Keep fighting.


  9. Kelly
    Apr 28, 2017 @ 15:50:01

    Thank you for your update, I always enjoy your post. I’m So happy for you & your family. More violin practices & concerts. Getting to inhale deeply the soon to be summer air is a gift.


  10. Eric
    Apr 28, 2017 @ 19:41:17

    AWESOME! Great start on the road to NED status. I’ve heard/read of stage IV patients that aren’t cured but have lived with stable disease for years so I know you’re in the game here.


  11. Nuria
    Apr 28, 2017 @ 21:20:12

    Very happy for you. Time for those forces of evil to give you a freaking break. I am humbled at your determination and honesty and think of you often. Thank you for the update. Enjoy the spring!


  12. Barbara Gettelman
    Apr 28, 2017 @ 23:58:28

    So encouraged by your news. You are one tough cookie! Hopefully the beginning of good reports.


  13. Binney Caffrey
    Apr 30, 2017 @ 11:21:38

    Julie, this is so fantastic to read! Breathe deeply my dear friend. Much love, Binney


  14. Norma Cirincione
    Apr 30, 2017 @ 15:40:07

    Julie, Edward joins me in sending you and Josh and your girls all our love, Norma


  15. shanbrock6
    May 03, 2017 @ 09:19:02

    This is wonderful news Julie, i am so happy for you, what a relief, may the good results continue and, your strength and determination are just amazing and I suspect have a great deal to do with this healing.


  16. Tee
    May 04, 2017 @ 18:42:35

    Hi Julie
    My father was diagnosed with colorectal cancer 7yrs ago. He was treated with folfox 5fu and avastin, he wud have monthly breaks inbetween 6 cycles and ct scans every 3 months. It metastatised to his lungs a spot on his liver and unfortunatelty to his spine last january after gps/consultants failed to act on progressive pain with a limp. Even though he had been living with colorectal cancer for 6 yrs and had been told that it was incuarable and that the only treatment being offered was to keep the cancer stable with chemo, those 6yrs had been very good yrs with minor set bks and limited pain. The moment it spread to his bone was when we knew things were serious. It was horrible, he has deteriorated rapidly (mobility issues and having to be on constant alert of spinal compression) all of a sudden he was put on copious amounts of opiods, oxycontin, oxynorm, diaclin, steroids etc. It was a shock bcos we naively thought the 6 yrs before hand were as tough as it could get. His consultant uses the sofly-softly aproach, never giving stages or prognosis of life expectancy, maybe its good in one way. Im writing to you because i dont know anybody with this illness and I feel alone in this when my father looks to me for answers that I cant give and for the first time in 7yrs im terrified of loosing him and even worse that he will suffer in pain. Im researching every night and asking taboo questions about canabis oils but the palliative care nurses and consultants do not entertain this topic at all. Its hard to make the decision as his daughter and carer if i should try to introduce a canabis oil as none of the proffessionals will give me info on how to do that safely considering all of the meds he is on. He has had radiation and nerve blocks but to no avail and he suffers with a burning/sciatic type pain on his instep and leg and sometimes his back. All he wants is to be free from pain and i can’t seem to do that for him. Im so glad that u have had good, positive results from your scan and long may that continue. You are a remarkable and strong person I am so thankful to you for sharing your story. It reminds me that my father and I are not alone in this. The scans and meds will continue for us, for now. I pray for you Julie, for your family, for my father and I and for all those that face this battle. Stay positive and smile when u can. As tough as it is, we both try to do this for each other. X



Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: