The Next Move

For the last couple weeks, I’ve been planning my next strategic move in my war against cancer. As you may recall, after my clean MRI scan in early October, my oncologist, Dr. A.C., gave me four options: (1) continue with full-blown chemo, (2) go on maintenance chemo of 5-FU and Avastin, (3) stop chemo altogether and proceed to a “wait-and-see” approach with monthly CEA testing and quarterly scans or (4) take the rather unusual step of undergoing a “second look” exploratory surgery to visually inspect my insides in what would be the most accurate and reliable form of monitoring (better than any scan). In light of the minimal risks involved with, and the tremendous amount of information to be gain through, Option #4 (which would serve as the basis for my next treatment decision), I decided to go with a “second-look” laparoscopy. That surgery happened on October 31 and revealed that not only was I free of visible disease within the abdominal cavity but that based on the washings or “cytology” in the medical parlance (i.e. fluid flooded into the abdominal cavity, sucked out and then tested), I was also free of microscopic disease, or at least such a result gave me a 50/50 chance of being free of microscopic disease. It was not a result I or Dr. A.C. or my surgeon, Dr. D.L. expected. We were all prepared for the cytology to come back positive so when it didn’t, even though the results are only 50/50 reliable, we were all thrilled.

I saw both my oncologist and surgeon this week, Dr. A.C. on Monday and Dr. D.L. yesterday. They both hugged me. They were both beaming. Dr. A.C. told me, “Good job,” and in that moment I felt his pride in me, not unlike a father’s pride in his daughter. Implied in the hugs and the smiles from my doctors was a profound delight in the victory we had won together, a self-satisfaction on their part in their technical skills and their compassionate humanity, a happiness, tinged with wonder, on their part, and a humble and grateful pride, on my part, in the resilience of my body, a resilience that had allowed it to withstand well the collateral damage of 25 rounds of chemotherapy and 2 surgeries. While I have often thought of how horrible and depressing it must be to be an oncologist, surgical or otherwise, I saw in my doctors’ joy then how certain victories make it all worth it.

Dr. D.L. told me that what surprised him most about my surgery was not that my cytology had been negative but rather the remarkable absence of scar tissue, which had allowed him to see everything so clearly. Another person receiving the same HIPEC surgery (given the same history of a perforation at the time of the initial colon resection) would have likely developed significant amounts of scar tissue that would have necessitated Dr. D.L. maneuvering during this exploratory surgery with the laparascope every which way to see, something he was willing to do, but within limits. Scar tissue, also known as adhesions, is the frequent cause of bowel obstructions. (In fact, based on a CT scan at the time, we had assumed that my small bowel obstruction in April post-HIPEC had been a result of adhesions on my small bowels. But since Dr. D.L. did not see any adhesions, he is now forced to conclude that my obstruction had been instead the result of ileus (a slowing down of the intestinal tract that can sometimes be brought on by the trauma of surgery).) Scar tissue, because it can be as hard as cement, also makes future surgeries, particularly laparoscopic ones, much more difficult. I had always understood that scar tissue started to form the moment one’s insides are exposed to air. Dr. D.L. said this is generally true. So why, I asked, had I not developed scar tissue? He said, maybe the chemo post-surgery had inhibited the formation of scar tissue. But truthfully, he didn’t know. I think if he and I could unlock the secret of why I escaped this common occurrence, we would both be quite famous and wealthy.

As I look at my paunchy stomach littered with ugly scars and deformed forever, a stomach that aggravates me to no end as it makes it so difficult for me to fit into my old clothes, I have to give it an affectionate love pat – yes, I am proud of my body, this body that for some unknown reason resisted internal scarring, this body that despite everything it has been through remains fit and capable of keeping up (for the most part) with the 20-something-year-old girls in their stylish tank tops and hip-hugging yoga pants at my gym. I am proud of my mind and spirit. I am proud of what I have achieved. I am also so incredibly grateful to have this body, mind and spirit, as sick as it has been and as flawed as it is. I am grateful to have the doctors I have. I am grateful to have Josh, my girls and the incredible support that surrounds me.

And yet, I understand that this war is far from over. This is but a brief respite, an opportunity to regroup and strategize. I don’t truly believe, notwithstanding the cytology results, that I am microscopic disease free. I feel that there is inactive microscopic cancer cells within me. Before the surgery, I had asked Dr. D.L. if he believed I had microscopic disease in me. He said that if he had to bet, he would bet that I did. Yesterday, I asked him if he would still make that bet. His response:  he would certainly bet less money. So, we strategize and plan the next move now with the belief that there is still microscopic disease.

While I opted for Option #4, I always knew that doing so would not preclude Options 1 through 3. Now that I am as clean as medical science can determine, Option #1 – continuing with full-blown chemo – seems too extreme. Traditional chemotherapy attacks only active cancer, that is cancer that is multiplying. I am concerned with inactive cancer at this point or cancer cells that are still in their infancy. Additionally, just like antibiotics, cancer cells develop resistance to chemotherapy and so it’s best to save the big guns for if and when they’re needed. I wasn’t in favor of Option #2 – maintenance chemo of 5-FU and Avastin – before the surgery and that continues to be true after the surgery. As I’ve previously noted, it hasn’t seemed to work on me in the past and the literature on its effectiveness is dubious at best. And Option #3 – doing nothing – well, that’s just not something I do, if you haven’t figured that out by now.

So, I set out to find new options for myself. I went to see Dr. Raymond Chang, a famous internist who specializes in non-conventional treatments. He is an MD, not a PhD or naturopath or other person claiming the title of medical doctor without any legitimacy. I have met a couple cancer patients who speak glowingly of him. Plus, my oncologist knows and likes him and even recommends him to his patients who are interested in integrative or alternative treatments. I read his book, Beyond the Magic Bullet, which I thought was legitimate enough. In particular, I liked his strong emphasis on relying on human studies, as opposed to in vitro or animal studies. Based on all of the above, I was willing to go see him and pay the $875 an hour (that is not covered by insurance) — I try not to think of the money! (Incidentally, I’ve long since stopped taking the Chinese herbs from the Chinese Medicine Man because I didn’t discern any noticeable effect, and I realized that I had become one of those people who was desperately grasping at straws without having done the research I needed to be comfortable – so I stopped.) In addition to vitamins and supplements and the like, Dr. Chang proposed alternatives like metronomic chemotherapy (i.e., delivering traditional chemo drugs at lower dosages but more frequently), hyperthermia (i.e., shooting the body with heated microwaves on the theory that the heat will kill tumors) and the use of various non-FDA approved drugs that are used in other countries and which he is able to import through the compassionate use loophole in the federal laws. He did print studies that accompanied every option he proposed and encouraged me to do my own reading. After some research and much thought, I’ve determined that the only thing I’m comfortable doing in the way of integrative and alternative therapies is vitamins and supplements (within limitations). I don’t really believe those things will make much of a difference but I think they will not harm me so I’m willing to give them a try. I asked Dr. A.C. and Dr. D.L. their opinions and they agreed with my conclusions. In fact, Dr. A.C. said the other stuff was “snake oil”.

It’s hard to avoid the talk of diets, whether vegan or alkaline or low carb, when you have cancer. Someone will inevitably say, you should juice or switch to a plant-based diet or avoid all sugars. People have asked me privately my opinion about diet and I will state it here for the record. I tried a plant-based diet when I was first diagnosed – again one of those desperately grasping at straws acts – and I absolutely HATED it. It’s not that I love meat – I in fact don’t eat that much meat and when I do it’s mostly fish and poultry and organic at that – but I can’t give up eggs, milk, butter and cheese. Barring irrefutable evidence that animal products cause cancer (and The China Study doesn’t count as irrefutable evidence), I’m not willing to give up certain things. The same is true of sugars and carbs. Food is a quintessential part of the human experience. Its enjoyment is such a big part of life and to give up the foods I love completely without the irrefutable evidence that might justify its sacrifice is a compromise in the quality of my life that I am unwilling to make. I believe in eating as much unprocessed food as possible, lots of fruits and vegetables and whole grains and with some meat and fish and the occasional dessert. I generally avoid red and smoked meats (although I do eat pork once in a while — we Chinese love our pork!). Everything in moderation, as they say.

Another hot (and very controversial) topic in the cancer world is cannabis oil – concentrated extracts from the marijuana plant that are ingested orally or through a suppository. I’ve asked my doctors their opinion about cannabis oil. Dr. A.C. says it sounds like the best thing since sliced pizza based on the anecdotal evidence but there are absolutely no human studies.  It’s funny how one never hears from those people for which it didn’t work — that’s the oddity with anecdotal evidence. Neither of my doctors believes in it as an anti-cancer medicine (although I’m sure they wouldn’t object to me doing it to combat treatment side effects). Indeed, if you listen to all the stories, you’d think it was the magic cure-all, the solution to all the medical problems of the world, that it can treat everything from cancer to autism to psychosis. The greatness of its alleged power makes me suspicious. No doubt, it has the ability to improve appetite and relieve pain, but as to its ability to retard tumor growth or cure cancer, I am not a believer. Its supporters can offer all kinds of reasons for why there are no supporting studies, including the will of the evil pharmaceutical companies and those conservative policymakers who fight its legalization. I’m not interested in engaging in the debate here but after research and participating in the debate somewhat and for many reasons (not the least of which is its illegality in my state and the lack of adequate regulation even in those jurisdictions where it is legal), I’m not persuaded and will be abstaining.

Before my surgery, after I had asked online whether anyone had ever continued with full-blown chemo even with no evidence of disease (something my oncologist had favored at the time), a woman in one of my support groups sent me a private message. M is a researcher extraordinaire. Not a colon cancer patient or survivor herself, she did lose a friend to colorectal cancer and since then she’s shared her exceptional research skills with those of us trolling the forums for information. She told me I might want to consider something called the ADAPT protocol, a treatment developed by Dr. Edward Lin out of the University of Washington that is currently in the Phase II clinical trial process. There are only three phases of drug testing before it is approved by the FDA and Phase III is generally a rubber-stamping, meaning much of the evidence in support of the drug therapy is established in the first two phases. M sent me a link to the clinical trial at clinicaltrials.gov as well as links to the published journal articles discussing the results of the trials from 2007 through 2012. I read. I made Josh read. The results in Phase II have been astounding – 92 month survival rates for metastatic colon cancer for 40% of the cohort, a disease that typically sees an average of about 24 months. The protocol involves taking Xeloda, the oral form of 5-FU (which I’ve had all along) and Celebrex (an anti-inflammatory drug that is used to treat arthritis). Dr. Lin describes these drugs as working together to awaken the cancer stem cells and then killing them, akin to poking a bee hive to bring out the bees and then spraying them with a pesticide. Dr. Lin likes to get patients to the point of no visible disease or as little visible disease as possible before starting this protocol. It seems perfectly geared to someone in my position, someone with no visible disease but with suspected microscopic disease. It would be low dose oral medications with minimal side effect, so no need to go to the infusion center and just generally minimally disruptive. I was persuaded.

I sent emails to both Dr. A.C. and Dr. D.L. before my appointments with them with links to the trial and the articles, letting them know that I would expect to hear their opinions. Neither of them had heard of the trial but the use of Celebrex in treating cancer has been around for 20 years at least. It’s not such a crazy protocol and both think this is a reasonable next step for me, especially since they know how proactive I am and that I’m not good at doing nothing. If I didn’t do this protocol and I had a recurrence, I would kick myself a million times. I don’t qualify for the trial because I don’t meet certain of the criteria (nor do I really want to travel to Seattle to see Dr. Lin every month), so I would do it off-trial.  Dr. Lin regularly consults with oncologists throughout the country. So, my oncologist is talking to him about appropriate dosages and other nuances. After our appointment, I sent another couple emails to Dr. A.C. emphasizing my desire to understand the toxicity profile.  I need to understand the potential negatives well before making a final decision about this.

I have learned throughout this cancer journey that when the options aren’t so appealing, you have to go out there and find other options.  As much as I acknowledge how little control I have in my life, I do try to control what I can.  Then, I can let everything else go and let the universe do what it will.

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5 Comments (+add yours?)

  1. Tyler
    Nov 20, 2014 @ 15:01:47

    I think that your Corralling of research is amazing. Is it the oral chemo that awakens the cancer stem cells and then the Celebrex rids them because Celebrex thinks they are inflammation or do the drugs work by Celebrex identifying the cells and chemo killing them off? I hope you still use accurpuncture to help your body “take out the trash” and stay tuned up. Maybe this off study prescription will help more People in NYC. Keep it up Julie.

    Reply

  2. Della
    Nov 20, 2014 @ 15:43:18

    You are awesome! I wish I had an ounce of your drive and courage. Congratulations on your good health. I am so happy that you and your family have this positive news during the holiday season.

    Reply

  3. The Astonishing FartMan
    Nov 21, 2014 @ 14:51:27

    The info can be pretty overwhelming, but you are doing a great job gathering and sifting it, which will be helpful for others who find themselves in a similar situation.

    As you might recall, I was diagnosed stage IV with liver mets in 2010, had bowel surgery, liver surgery, and chemo (FOLFOX with Avastin) and then was declared NED.

    But six months after finishing chemo, I had a recurrence–a met in my liver. Things did not look good! After a second liver surgery to cut out the new met, my onc “offered” me chemo, but when I pressed him about it, he said he would not do chemo in my situation. The realistic expectation was that, having had a recurrence so quickly, the chance I would have more recurrences was very high, and chemo was not likely to prevent them, so there was no reason to put myself through the chemo misery that would probably do more harm than good.

    That was Feb. 2011, and I’ve been NED ever since.

    Of course, my situation is/was quite different than yours because, as I understand it, peritoneal cancer, by definition, involves a greater risk of microscopic disease than does cancer that is within organs. If I was in your situation, I would definitely be looking at options to address the possibility of microscopic disease.

    Speaking of advice, when I first got sick, a “well-meaning friend” once suggested that instead of doing chemo, I should use some herbal therapies she read about in a new age book. She bought me the book and gave it to me as a present. When I told her I was going to stick with the advice from doctors at the world’s number 1 rated cancer center, she was quite put out and said, “Well, if you’d rather die, that’s your decision.” She actually said that to me!

    So . . . take this suggestion with a grain of salt–actually, you probably should avoid salt–but anyway, when I had my lovely recurrence and decided against chemo, I still wanted to “do something.” I had heard there were a few animal studies showing Grape Seed Extract might some good effects on CRC, so I started taking it right after my surgery. And recently there have been more studies that suggest a positive benefit. The good thing about GSE is that it doesn’t appear to have any bad side effects and doesn’t seem to interfere with other chemotherapies. In other words, it might help and it is unlikely to hurt.

    Here are a couple of links:

    http://www.ncbi.nlm.nih.gov/pubmed/19003575

    http://www.oncologynurseadvisor.com/grape-seed-extract-selectively-targets-colorectal-cancer-cells/article/277665/

    Reply

  4. Kit Grady
    Nov 21, 2014 @ 15:21:31

    After careful study, my hubby has begun this ADAPT protocol with our doctor’s approval. We have been on it 3 months with a scan planned next month. Aside from some discomfort from hand/foot pain he likes the treatment, which is much improved from the iv chemo effects. We will keep you posted. So happy you are doing well- Keep up the good work

    Reply

  5. Steph
    Dec 04, 2014 @ 23:08:25

    I’ll be eager to hear if you start the oral pills for theistic cell treatment. I’ve been looking into it myself, and I know Toronto has only recently finished with mice so I too would be working with Dr. Lin. At this point, the next step for me is HIPEC, I’m hoping my single nonnative small liver met won’t disqualify me as the rest of my visiblemcancer is my ovary and in some fatty tissue down there. But I’d like to have ADAPT as an option for me down the road.mwondering what it would costmamcanuck like myself….?

    Reply

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