I’ve been back from the Galapagos for about ten days.  It was a great experience worthy of an in depth and thoughtful blog post containing my reflections on the wonders of those islands.  That is forthcoming.  However, since my return, there’s been a fair amount happening on the medical front that has been consuming my time and attention during the last few days.  So I felt it time to provide a quick update.  I feel rather disingenuous communicating with my family and friends without them knowing what’s really going on.  So here is the not-so-good news. 

I knew that when I returned from the Galapagos I would have to end my period of running from the reality of my disease, to show some courage, buck up and face the music.  Yes, I’ve been thoroughly living my life while on my relatively easy regimen of maintenance chemotherapy, but in a sense I’ve been an escapist, shunning the discussion boards and reading for leisure rather than for research purposes,    For the last couple months, I knew something was going on because my CEA, which has historically been such a good indicator of what my disease is doing, has been trending up since my previous scan in April from 15 to 19 to 20 and most recently 22.  The number itself doesn’t mean much but the trend is what matters more.  Seeing that trend, I planned my trip as early in the summer as possible, knowing that what my oncologist called “the Galapagos treatment plan” would have to end afterwards, hoping that the maintenance chemotherapy would slow growth enough to hold me over until I returned.

When I returned to New York, I scheduled scans.  Those happened last Thursday.  Typically, I would have beaten down Dr. A.C.’s door the following day to learn the results; typically, I would have been more anxious.  But no longer.  Maybe because in accepting the inevitability of my fate, I have discovered peace.  I’m always astounded when people post on support groups that their scans are that day and ask for prayers as they are in the throes of “scanxiety”; I’m thinking, “Whatever is there is there.  It’s too late for prayers now.”  I was calm, shockingly so even.  My girls came back to New York on Friday after spending two weeks with their grandparents in South Carolina so I was set on meeting them at the airport; being there to greet them was my first priority; the scan results could and would wait until Monday.  Nothing would change in the interim.

The weekend was busy with activity with Monday afternoon arriving soon enough.  Again, I was shockingly calm as I waited for Dr. A.C. in an exam room, perhaps because I already knew what to expect.

I have mild progression in three of the nodules in my lungs with growth of 3 mm (i.e., 1/8 of an inch) in each of those nodules over the last five months, since my prior chest CT and abdominal and pelvic MRI in February.  While I did report that my PET/CT in April showed stability, I suspect there was nonetheless some growth even then.  The PET portion of the scan couldn’t actually detect the lung nodules because they were too small to be seen by a PET and the CT that comes with a PET (which did show the lung nodules) is not refined enough to appreciate such small growth.  There doesn’t appear to be any new disease and the rest of my torso appears to be free of tumors (although I am always aware that peritoneal mets often escape detection by scans and given my history I always worry about my peritoneum).

Emotionally, I’m fine.  The news did not devastate me.  Learning that I had mets in my lungs and was therefore incurable last December was devastating; learning that I had cancer in the first place was devastating; but learning that I had 3 mm growth in three of my lung nodules with the largest lung nodule measuring 6 mm in total over a five-month period was not devastating.  You see, given my diagnosis and prognosis, I expect progression now.  I expect things to get much much worse before this is all over.  I live every day like it’s my last, at least I try to.

This is not good news.  Of course, mild progression is a helluva lot better than major progression.  I appreciate that fact and am grateful that for the time being my disease seems to be slow-growing.  Who knows?  Maybe the maintenance chemo has actually aided in slowing growth.  Even so, my oncologist and I agree that it’s time to change the plan.

The first option Dr. A.C. proposed, which isn’t really an option at all, is increasing the Xeloda dosage.  Xeloda is part of my current maintenance protocol.  We tried this several months ago and that really wreaked havoc on my skin.  There’s also the option of altering the dosing schedule from five days on and two days off to something that would give me more time in between for my skin to heal.  Dr. A.C. isn’t so inclined to give me more of a drug that doesn’t appear to be working so well in the hopes that more of the same will do the trick.  I’m not so inclined either.

The conventional move would be to go to the next drug in the short list of drugs that constitute the standard of care, a drug called Erbitux, with or without an old favorite, Irinotecan.  In 15-20% of CRC patients, Erbitux works as a single agent; in the rest, it works better in combination with a Irinotecan or Oxaplatin (both of which I’m very familiar with as per prior chemotherapy regimens).  Erbitux produces terrible redness and acne.  Yuck!  But hopefully, I’d be free of the horrible cuts on my hands and blisters and peeling skin on my feet.

Knowing that Erbitux in the best case scenario will only stave off the disease for a time, I asked Dr. A.C. about radiation, as in “Can’t we zap some of the bigger ones with radiation?”  “To what end?” was his response.  He then expressed to me that radiation by itself didn’t seem worthwhile, but radiation in combination with an immunotherapy drug might be worth doing.  Now, there is absolutely no evidence on humans that this will work for colorectal cancer but many clinical trials are being launched to exploit the seemingly synergistic effects of radiation therapy and immunotherapy.  Even if the radiation involves one little spot, something about radiation seems to trigger an immuno response, which is then facilitated by the drug, that prompts the immune system to kill the cancer cells. So goes the theory and the hope.  One cannot be done without the other.  Given that none of my nodules are 1 cm or greater, I would not qualify for a clinical trial at this point and so Dr. A.C. would have to obtain the immunotherapy drug directly from the pharmaceutical company on a compassionate basis, something he believes he can do in 2 to 3 weeks.

Dr. A.C. suggested I go talk to Dr. F., a radiation oncologist at Weil Cornell.  I saw her this afternoon.  I was struck by how often she declared that my mets are “tiny, tiny”.  She doesn’t want to zap any of the nodules at this time, not even the largest one.  Radiating the largest nodule, at 6 mm, would cost me too much healthy lung tissue, a sacrifice that she doesn’t believe is worthwhile.  Her recommendation was for me to allow the nodules to grow and rescan in mid-August to see whether any of my nodules had grown to 1 cm, at which point she would feel comfortable radiating just that tumor and I would also qualify for a trial that is launching at Cornell in September.  While trials seem exciting, they are frightening to consider because their likelihood of success is less than five percent.  I have a lot of reading and research to do in the coming days.

Finally, I’ve independently started looking again at laser assisted surgery for the removal of lung metastases, which is effectively available only in Germany and England.  The use of a high frequency laser to resect up to 100 deep-seated nodules per lung as small as 1 mm, that conventional surgical techniques would consider inoperable, carries an obvious appeal for someone like me who has 20 bilateral mets.  Indeed, I’m sending my scans to the two most prominent thoracic surgeons who do this for evaluation.  The prospect of leaving my children for six weeks split over three months, planning for their care in my absence and recuperating from major surgery in a foreign country, seems so incredibly daunting.  But I will figure all that out if and when the time comes.

I find these decision points to be the most stressful times.  I’d like to make the decision and go back to living my life.  Obviously, I will update when the decision is made.  In the interim, we are finalizing the design for the new apartment, Belle’s 4th birthday party is this Saturday for which I plan to bake a cake from scratch and Mia lost her first tooth the other day.  Life is so busy and wonderful and fun; cancer feels so incongruous with my life, but I have no choice but to make room for it.  It used to be that cancer dominated my life; now cancer is just an annoying part of my life.  That change is what has made all the difference in the world.



14 Comments (+add yours?)

  1. jjaug17
    Jul 23, 2015 @ 00:34:58

    Continued prayers for you and your family.


  2. jjaug17
    Jul 23, 2015 @ 00:35:48

    On another note, Galapagos is pretty darn awesome!


  3. courtneytollison
    Jul 23, 2015 @ 01:07:56

    You are an amazing person. Stay strong!


  4. Cristina
    Jul 23, 2015 @ 01:25:19

    You are in my thoughts all the time. Unfortunately my cancer mirrors yours, down to the CEA numbers and the lung mets. I hope you find the rightt treatment.


  5. Christia
    Jul 23, 2015 @ 01:32:45

    As always, we’re holding you and your family in our thoughts, Julie.


  6. Chris Rice
    Jul 23, 2015 @ 02:59:21

    Julie, I am so glad you are looking to some other options. Germany seems to be one that has the best outcome. I understand what your concerns are though.
    I started praying for a way you could make the trip and take the kids with you. Hopefull for a host family arrangement that may be available for this situation. Just think how great that would be for the girls as well to travel and experience a new culture while you are undergoing treatment.
    Just thinking about so many things that as possible.
    I admire your courage and strength.


  7. Kris
    Jul 23, 2015 @ 08:29:25

    So many factors, pros and cons, to weigh. I can only begin to imagine how hard it must be to make such decisions. But you will do what makes the most sense for you and your family. I am so glad you had the reprieve of the Galapagos before, and the happy, busy, normal parts of your life during this decision time. I am thinking of you, and sending hope.


  8. Anne Marie
    Jul 23, 2015 @ 10:01:24

    Thinking of you, Julie, and sending lots of love and strength your way to make the decision which is right for you. Keep on embracing life – I look forward to hearing more of your Galapagos trip, your daughters’ milestones and your ever-inspiring cooking adventures, too!


  9. Jeanine
    Jul 23, 2015 @ 10:16:16

    Julie, Germany sounds very promising. You will make the choice that is best for you. Keeping you in my thoughts and prayers.


  10. The Astonishing FartMan
    Jul 23, 2015 @ 10:31:41

    Can’t wait to read of your Galapagos experience.

    Meanwhile, as it so happens at this very moment I’m sitting in MD Anderson in the large 2nd floor waiting room that looks out over the hospital’s main entrance. I’m waiting to go check in for my now semi-annual CT Scan (and yes I do have scanxiety, although nowadays it kicks in only a week or so before the scan date instead of a month before).

    Below me I see cars pulling up to the hospital main entrance in a steady unbroken line. MDA has an amazingly efficient valet parking system. Looking down upon the army of uniformed valet attendants greeting visitors smartly, one might imagine this place was a luxury resort, f it weren’t for the faint yet distinct hospital odor in the air. The room prices are comparable!

    I did as you suggested in your last post and went back to read the three older entries you recommended. You HAVE changed: More steely-eyed now, but also softer. I would almost say you are “more honest” now, but that’s not the right way to express it. You always were honest, but now I think your observations seem to cut deeper.

    (I’m composing this on my iPhone, which is slooooow when I can’t use voice recognition.)

    One of the strangest things about cancer is the “life goes on” aspect. There were, and still are, times when it seems odd and not quite right to me to have a conversation that does not mention the C word. After everything I’ve been through, It seems odd NOT to tell the cashier at the grocery store as she hands me my change, “Oh, by the way, I have (had?) cancer.” But cancer is only my personal disaster and the disasters of those who love me. The grocery cashier doesn’t care.

    Forgetting about cancer, when I can and when I should, is something I still would have to make an effort to remember to do. Better is when I can just “live with it” while “life goes on,” you know, not hiding from it, but not obsessing over it.

    (Admit it: You wanted ride on one of those turtles, didn’t you!)


  11. Nzinga
    Jul 23, 2015 @ 13:45:07

    You’re an incredible inspiration, Julie. I’m holding you and your family in my heart and my prayers.


  12. Barbara Gettelman
    Jul 23, 2015 @ 14:12:45

    You have so much going for you, your courage, your razor sharp mind and your unlimited willingness/energy to tackle the unknown. I am from a family of doctors and it has mostly been verboten to seek medical attention outside the U.S. However, I have heard so many success stories resulting in just that. Sadly, I think we have been left behind in much innovative treatment. Follow your wisest self, whatever the hell that means. I just am so confident in your journey and the choices you have made along the way, medically and otherwise.
    Montana is available. Do you want me to send photos? I wouldn’t be there but we have caretakers. I wish I could do something for you.


  13. Rebecca
    Oct 29, 2015 @ 03:53:19

    Hello Juliey,
    My situation is very similar to yours. My 2nd line (avastin + 5fu + oxi) has just stopped working. My options now are clinical trials and erbitux + folfiri. Have you considered RFA (radio frequency ablation) to get rid of the tumors in the lung? Mine were .6mm – .7mm 3 months ago. Now the largest one is 1cm. Just wondering if you have asked for it.

    I am about to see Dr. Lenz in USC Norris Cancer Center in Los Angeles. They have different clinical trials that target on specific genes.



    • julielyyip
      Nov 10, 2015 @ 10:38:55

      Hi Rebecca. In answer to your question, I have too many tumors that are difficult to get to for RFA. If I just had 1 or 2, that would be an option. Good luck with Dr. Lenz and drop me a line to let me know how it goes. He’s one of the best in the country, as I’m sure you know.


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