Chaos

So much has happened medically and otherwise since my last post, it is hard for me to know where to begin.  Chaos seems to be the theme of my life.  Sometimes, I really wonder how my mind processes everything that is my crazy, insane existence.

As of my last post, I was trying to decide whether I should spend $27,000 for two treatments of an epigenetic drug called Vidaza, that in a preclinical setting had shown an ability to make colorectal cancer cells more susceptible to immunotherapy. I had already decided that at a minimum I would do what Dr. AC originally presented to me as his “crazy” idea – radiation therapy plus two immunotherapy drugs called nivolimab (“nivo”) and ipilimumab (“ipi”). The radiation would be covered by insurance and the nivo and ipi, while not covered by insurance because they are not FDA-approved for colorectal cancer, were being given to me by their manufacturer, Bristol Myers Squibb. The idea was “crazy” because that therapeutic combination has never been done in a colorectal cancer setting, perhaps any setting. I know of three clinical trials for all solid tumors combining radiation with a drug similar to nivo, but certainly not nivo and ipi. Dr. AC himself has administered radiation plus nivo and radiation plus ipi, but never radiation plus nivo and ipi. I knew from my research and speaking to others who have undergone this type of lower dosed and highly targeted radiation as well as those who had taken the nivo and ipi, alone or in combination, that the treatment would likely be tolerable with manageable side effects. Until that point, my metastases had been exclusively in the lung and subcentimeter, making radiation a much riskier proposition. Any target less than one centimeter is difficult for the radiation oncologist to visualize and radiate and radiating any organ, particularly the lungs, can be dangerous. But then in my June scan, I suddenly had an enlarged and likely cancerous lymph node in my pelvis that was larger than one centimeter; there were no vulnerable organs nearby. At no financial cost to me and with little physical risk, Dr. AC’s “crazy” idea, given the absence of any attractive clinical trials, was a no-brainer for me.

Dr. AC, after attending an oncology conference in Paris and seeing a presentation on Vidaza, spoke to me while I was in Los Angeles at the beginning of July about an even “crazier” idea. I was using my time in Los Angeles to think and research and think some more about what to do in light of my most recent progression. Dr. AC proposed pre-medicating me with Vidaza and then proceeding with the radiation and immunotherapy combination.

Cancer has an amazing ability to hide from our body’s natural defenses by masking itself as non-foreign, by forcing immune cells to “put on the breaks” and preventing those immune cells from obliterating that which is harmful to the body. Nivo and ipi work by “releasing the breaks” on different types of immune cells when it detects cancer cells. The radiation is simply a way to “mess up” or mutate the cancer cells so much that it’s much easier for the immune cells to detect the cancer. Theoretically, Vidaza would work like the radiation, by mutating the MSS character of the cancer cells into MSI; a subset of MSI tumors have been clinically proven to succumb to immunotherapy . It was Dr. AC’s belt and suspenders approach, as he tried to cover as many bases as he could. However, unlike the radiation and nivo/ipi combination for which there was some clinical precedence and evidence of effectiveness, there was no such thing for a Vidaza and immunotherapy combination. The clinical trial combining Vidaza and an immunotherapy drug, which is being launched based on the preclinical data presented in Paris, is not even recruiting patients yet.

But Josh and I had read the preclinical papers on Vidaza. We were prepared to fork over the $27,000. I thrust myself into Dr. AC’s office the following Monday, emphatically declaring my willingness to move forward with the even “crazier” proposal – that and demanding a new set of scans to establish a baseline in advance of undergoing our new treatment plan and to perhaps explain all the pain I was having in my pelvis, hips, back and knees.

As you may be able to surmise from my oncologist’s willingness to take unorthodox approaches and to administer treatments outside of clinical trials, he is undaunted by the legal risks that he assumes by doing so. A rare type of doctor, indeed. He is not one for formalities and seems immensely annoyed by bureaucratic processes that require him to cross his t’s and dot his i’s. And so, I was taken by surprise when he issued what felt like a verbal legal disclaimer.

“Julie, I have to be above board here and make sure you understand that there are risks associated with this combination,” he said rather soberly.

“Of course. I understand,” I quickly responded. He was saying out loud what the fine print says in those many consent forms I’ve signed before taking each new chemotherapy drug. “I could develop auto-immune issues. Or my body might reject future chemotherapies.” I said the last bit thinking of someone I knew who after progressing on the nivo/ipi combination returned to traditional chemotherapy with disastrous results. She passed away last month.

“No, I’m not talking about that. This combination has never been tried on any human being. I’m saying you could die and no one would care about future chemotherapies,” Dr. AC said.

“I get it, It’s fine.” I told Dr. AC. But it wasn’t fine at all. There’s something so unsettling about someone telling you that you could die, even though we all know that death is life’s most fundamental reality, and when you have metastatic cancer, it becomes life’s most prominent and unavoidable reality. Imagine a fortune teller or even a stranger on the street making a similar declaration. That would be unsettling in itself, but when your physician who doesn’t make a big deal about those minimal risks outlined in the fine print actually thinks that a risk is significant enough that he has to discuss it with me, well, then I have to listen. I know I am going to die from my disease (if not sooner from a car accident or some other freak incident). But to think that I might die from an adverse reaction to the combination of Vidaza and immunotherapy, it terrified me. I thought about all the things I had to do in the next couple weeks, not the least of which was moving us into the apartment next door as work on our apartment combination moved into the second and final phase. I couldn’t die in the next two weeks. This was not a convenient time to die. Is there ever a convenient time to die, I wonder.

I swore a long time ago that I would do everything in my power to die from the cancer and not from treatment for the cancer, that I would never become that frenzied, wild, unthinking creature that would do anything in an attempt to elude death, especially those things not rooted in legitimate science. Vidaza, on the one hand, had that kind of “fated” appeal – my oncologist had happened upon the data at an oncology conference just when we were considering next steps. On the other hand, Vidaza seemed completely random and the preclinical data in support of its use was possibly just as strong as preclinical data for any number of drugs that are the basis for the hundreds of Phase I clinical trials open and opening throughout the world, the vast majority of which will fail when tested on humans and not mice.

So as I underwent the preparation for the PET scan that day – we had decided on a PET scan which would be better at detecting bone metastases and which would offer a helpful bases of comparison against the chest CT and pelvic and abdominal MRI from the prior month – lying in a quiet room as the radioactive isotope flooded my veins and lying motionless in the machine, I tried to push past the panic that Dr. AC’s words had brought and impose reason and rationality on my decision making process. If the Vidaza and immunotherapy were being administered as part of a clinical trial where I would be in the hospital and monitored 24/7, that safety net might have been enough in my mind to mitigate the risk, but this would not be the case. If there was even the tiniest bit of clinical data involving the use of an epigenetic drug and immunotherapy or other chemotherapy for solid tumors even in one person, that might have swayed me. But there wasn’t. I had put Dr. AC in touch with the clinical investigators for the only two clinical trials I knew of involving an epigenetic drug and another agent, but those investigators had nothing useful to offer. The “crazier” plan was simply too much risk for me to assume for a very uncertain and dubious benefit. I did not want to quicken my death, not now, not like this.

And so when I went back to see Dr. AC that same day to obtain my results, I withdrew my willingness to experiment with Vidaza. Dr. AC seemed relieved to be honest, as was I. I was also relieved to hear that the PET scan showed no bone mets, so the source of my pain was not cancer related. The PET showed stability in my lungs from the June CT, but it did pick up three new tiny spots in my pelvis and abdomen, two of which were not seen in the June MRI. Oddly, the MRI had seen three spots as well, but only one spot (the pelvic lymph node) is common to both scans. So I have in total five spots; one is definitely cancer and the other four may or may not be.  Nobody knows what to think.

I had waited for weeks to see Dr. Silvia Formenti, radiation oncologist and director of the department at New York Presbyterian Weil Cornell Hospital (formerly of NYU). She had been on vacation and was just returning that Friday. I had an appointment with her on her first day back although Dr. AC and I had exchanged some emails with her while she was away so she would be ready to treat me immediately. I had seen her a year ago to discuss the possibility of radiation and immunotherapy then but my lung nodules back then were too small for radiation. I liked her upon this meeting as I did upon our first meeting, very kind and caring, obviously knowledgeable, beautiful. She’s Italian – Milan I believe – and dresses fashionably as I would expect of any Italian. But more importantly and I didn’t know this until I researched Dr. Formenti, she’s the leader in this area of radiation and immunotherapy. As a medical student in Milan in the 1980s, she dusted off the smattering of reports in the medical literature from the three prior decades about the “abscopal effect”, the rare and remarkable phenomenon of radiation to an isolated tumor causing a systemic cytotoxic response. Perhaps the inflammation brought on the radiation and then the immune response to address that inflammation had something to do with the abscopal effect. Dr. Formenti came to New York around the time when the first generation of immunotherapy drugs were coming into play and began experimenting with radiation and immunotherapy and has seen some success treating breast and lung cancer using this modality. In fact, she and Dr. AC have written at least one paper on their unlikely successes.

That Friday, we got right down to business. She says this works in 1 our of 5 patients, 20% odds. Not great, but better than anything else I have right now. She immediately had me prepped for SBRT (“Stereotactic Body Radiation Therapy”), a type of highly precise and targeted radiation from different angles in fractionated doses over the course of up to five days. It has to be highly precise since it my case the target is about one centimeter. Because of the need to be so exact, each patient who undergoes SBRT needs to have a mold created so that her body lies exactly in the same position during each treatment. I lay in a mold that initially felt like a bean bag and then went under an enormous CT machine in a freezing cold room that reminded me of every Hollywood depiction of a futuristic world I had ever seen, blue and white halos of light amidst metals and alloys and behemoth machines. The technicians strapped me to a table, recorded my position, permanently tattooed three tiny green dots on my stomach (for help with alignment during the treatments), and then took a series of CT images. The radiation oncologist over the course of the next few days would take those images and overlay them with my MRI and PET scan images and then she would plot the coordinates of my cancerous lymph node, which would then be programmed into the radiation machine. At least, I think that’s what she did.

As I lay there motionless amidst the strange lights and in the stranger machine, waiting for the doctor and technicians to do what I did not understand, I marveled in a way I had never before at human ingenuity, at what we as a race have achieved, at our intelligence. It was simply really cool and as much as it is awful that I get to experience first hand mankind’s ingenuity in this instance and on other occasions in the last three years because I have cancer, I still felt so humbled and amazed and grateful to be the beneficiary of so many brilliant minds past and present. In that moment, I really hoped for Mia and Isabelle to become brilliant physicists or scientists or biologists or doctors; I wanted them to be part of the advancement of our race, not lawyers like their parents. Now that I’m away from the experience, I want them to again to do what will make them happy but it would be really, really awesome if that involved the scientific and medical advancement of our race. Anyhow, I digress.

While Dr. Formenti “did the physics” as she described it, I was to go back to Dr. AC to receive my first dose of nivo and ipi. Then, I would have five consecutive days of radiation treatments. The nivo would be administered every two weeks and the ipi every six weeks, with scans to follow in eight weeks.

And so, I did exactly as I was told. My first immunotherapy infusion was uneventful even though my nurse practitioner warned me of a host of potential side effects from dermatitis to hepatitis to colitis to thyrodism. The radiation treatments, which I had last week, took two minutes, with the setup taking about 15 minutes if that. Much to my disappointment, there were no beams of light piercing my body, just a multi-armed machine that surrounded me, like an irregular gray plastic and metal flower with its petals circling my body as I lay in its center. The “petal” that actually administered the radiation moved around my stomach in a near silent arc, shooting invisible beams of radiation at the pelvic lymph node but their point of entry into my body was dispersed by the use of that arcing motion so my skin would be spared from radiation burns. Other than a bit of fatigue, I had no noticeable side effects.

In the midst of all this, more chaos reigned at home as we moved ourselves and our stuff into the much smaller neighboring apartment and the air conditioner broke and Isabelle almost knocked one of Mia’s adult teeth out and the dog peed on my bed and oh yeah, I was diagnosed with Lyme Disease (maybe) on the first day of my immunotherapy infusion.

With that cliff hanger, I’m going to sign off for now. Chipper needs a walk before I head off to the cancer center for my second immunotherapy infusion.

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13 Comments (+add yours?)

  1. Maia (Cee Cee)
    Aug 11, 2016 @ 12:01:55

    Love you, Julie. I only found out about your (and dr. A.C. plan) some days ago. I’m thrilled, hopeful… cheering for you. Just <3<3<3

    Reply

  2. akasleen
    Aug 11, 2016 @ 12:16:44

    Exciting stuff! I can identify with much of what you wrote, though our immunotherapy treatments are quite different. I hope this works for you–and for many others, too. I think you found a real gem in Dr. AC.

    Reply

  3. Janie Davis
    Aug 11, 2016 @ 12:32:53

    Julie,
    You are an amazing woman!
    I admire and respect you beyond words. Your frankness floors me and your courage inspires me.
    Much love and support to you!

    Reply

  4. Joanne LaGrega
    Aug 11, 2016 @ 13:05:29

    Julie, you are an inspiration to everyone who knows you. Praying for you always.

    Reply

  5. Jeannie H Moore
    Aug 11, 2016 @ 13:10:08

    Hoping for good results!

    Reply

  6. Katie Vogler
    Aug 11, 2016 @ 13:51:24

    Oh Julie – I am encouraged that you have such excellent doctors on your side, but worried about how the treatments will impact your quality of life. But you are doing the right thing – in this exciting era of medical breakthroughs around every corner, risks are worth taking. Please stay strong (or not) and let us know as you move through treatment.

    Reply

  7. Kelly
    Aug 11, 2016 @ 17:46:19

    Ugh the dog pee’d on your bed? I hate that! Wink.
    Thank you for sharing your life happenings. I’ve done 5 rounds of chemo, & in my head once I get to round 12 this nightmare will be over. Which may or may not happen. It really helps to hear what you & others are doing. To hear there’s hope or acceptance. To hear that I’m not the only one having logical/goofy thoughts, like I have stuff to do, I can’t die this week. I’m glad Mia has all her teeth.

    Reply

  8. Sarah Gonzalez
    Aug 12, 2016 @ 08:13:34

    I am fighting stage 4 colon cancer. I am a 42 year old mother of two sons who are 4 and 7. My thoughts and prayers are with you!

    Reply

  9. Ari
    Aug 12, 2016 @ 11:17:30

    Julie,
    My mother had stage 4 colon cancer and had hipec as well. You are a very special person and I hope you triumph against this demon

    Reply

  10. Rebecca
    Aug 13, 2016 @ 00:50:03

    Hi Julie, I am following your posts very closely. Your courage and the spirit to fight amaze me! You are always in my prayers. And, thanks for sharing the knowledge of current medicines that are being developed for colon cancer. I am still on Erbitux. Chemo was removed 2 months ago as my pet scan showed NED. Too good to be true?! Well, it’s only a matter of time that cancer comes back to say “gotcha.” Love reading your posts and can feel your spirit! Keep on fighting and show cancer who the boss is!

    Reply

  11. Bruce
    Sep 11, 2016 @ 00:16:14

    Hi Everyone, I stumbled on this website from browsing the internet and just want to say that your stories are so encouraging, so thank you! My wife was diagnosed with Stage 3b colon cancer last Sep. She had surgery to remove the tumor with no signs of mets on two CT scans prior to and after the surgery. She did Folfox for 6 months (12 sessions) with Oxi which finished in April of this year. At the end of May she had a follow up CT scan that showed two small lesions in the liver. MRI in June confirmed they were cancers likely from the colon. Luckily they were on the same side of her liver so it was operable and 60% of liver was resected on Aug. 3. Her CEA level went from 19 to 14 a month after the surgery. I’m thinking they may not have gotten everything since her CEA is still elevated so I started to do some more research. I’m not sure if you have heard of a drug called CemaVAX that was developed in Cuba. It’s dubbed a lung cancer vaccine. It won’t cure or prevent you from getting cancer, but it’s able to stop the cancer from growing or spreading. It is now being tested by the FDA and should be available in the US in the very near future.

    Quotes from wiki:

    “CimaVax is an active vaccine in which patients are immunized with epidermal growth factor (EGF), thus raising antibodies targeting EGF itself. The product is also formulated with the Neisseria meningitidis outer protein P64k and Montanide ISA 51 as an adjuvant to potentiate the immune response.[7] The epidermal growth factor receptor (EGFR) is hijacked by many types of cancer, including cancers of the lung, colon, kidney, and head and neck. By raising antibodies against EGF, which is EGFR’s major ligand, the concentrations of EGF in the blood are reduced. Thus CimaVax does not target the cancer cells directly, but is expected to work against these cancers by denying the cancers the growth stimulus they require.[7][8] For this reason, the Roswell Park group thinks that it may prove most useful as a preventive vaccine rather than as a cancer therapy per se.”

    Good luck with your fights against cancer, my prayers are with you all.

    Reply

  12. Barbara Trotter
    Oct 08, 2016 @ 00:57:46

    Julie-

    My 25 year daughter has Stage IV cancer and on a similar journey as you. You are an amazing writer and appreciate your honesty as you battle this horrible disease. Prayers you are well.

    Reply

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