Despite the hectic backdrop of late, I’ve been busy researching treatment options for patients like me with incurable squamous cell carcinoma of the head and neck (SCCHN). My first inclination was to pursue another immunotherapy, as there are a lot of clinical trials with novel immunotherapies and combinations currently recruiting. With my disease progressing, however, I felt that perhaps a more aggressive approach backed by data was warranted.

For example, one viable option is the chemotherapy-based “EXTREME” regimen with 5-fluorouracil (5-FU), cisplatin or carboplatin, and the monoclonal antibody Erbitux® (cetuximab). Initially, I discounted this option because 5-FU-based regimens can be associated with significant toxicities. Nonetheless, a multicenter phase III trial in SCCHN demonstrated a 36% longer median overall survival using the EXTREME regimen versus chemotherapy alone (10.1 months vs. 7.4 months, respectively). It was the kind of data-based treatment I was seeking, but I was really against receiving 5-FU.

One of the many nasty side effects from 5-FU is palmar-plantar erythrodysesthesia (PPE), also known as hand-foot syndrome (HFS). There are currently no treatments or preventions for HFS, which is characterized by tingling in the palms, fingers and soles of feet and by erythema, which may progress to burning pain with dryness, cracking, desquamation, ulceration and oedema.

I learned a lot about HFS while serving as CEO of VioQuest Pharmaceuticals. The company was developing a 1% uracil topical formulation to prevent HFS. Uracil is a naturally occurring substrate that directly competes with 5-FU for the enzymes that metabolize 5-FU to its toxic metabolites. When applied topically, the concentration of uracil in the skin greatly exceeds the concentrations of 5-FU, thus blocking the formation of 5-FU’s toxic metabolites. Unfortunately, there haven’t been any updates on the product’s development status since April 2010 according to ClinicalTrials.gov.

When we arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) late Sunday evening, I had already decided that if it came down to the EXTREME regimen as my best option – I would simply forgo further treatment, contact hospice, and let things progress naturally.

Fortunately, my medical oncologist at MSKCC, Dr. David Pfister, suggested replacing 5-FU with weekly paclitaxel, resulting in a chemotherapy regimen known as PCC (paclitaxel, carboplatin, and cetuximab), that has been found to be efficacious and well-tolerated in patients with SCCHN when used as induction chemotherapy. As a result, 5-FU and paclitaxel can be viewed as somewhat interchangeable, but paclitaxel offers a more favorable toxicity profile.

Unlike the two chemotherapeutics, cetuximab is a chimeric human-murine monoclonal antibody (mAb). MAb therapy, the most widely used form of cancer immunotherapy today, is a form of “passive” immunotherapy that often does not require the patient’s immune system to take an active role in fighting the cancer.

Cetuximab targets and binds to epidermal growth factor receptors (EGFR) that are found on the surface of many normal cells and cancer cells. Doing so stops the cell from continuing the signaling pathway that promotes cell division and growth, effectively stopping the cancer by stopping the cancerous cells from growing and multiplying.

I’m a big believer in the power of immunotherapy and believe that my recent treatment with the experimental M7824 (first-in-class, bispecific fusion protein of an avelumab-like antibody linked to two molecules of TGF-beta trap) had a positive effect on my disease. More importantly, there may even be synergy between what M7824 has done so far in combination with the PCC regimen. Even if the PCC regimen only shrinks my lung tumors, the reduction in disease burden could help future immunotherapy treatments be more efficacious.

Starting treatment with the two chemotherapeutics (paclitaxel and carboplatin) on 7/18/17 at MSKCC

Having plenty of time to weigh the future treatment options while the bleeding issue with my chest tube was being addressed, I decided that Dr. Pfister’s proposed PCC regimen made a lot of sense. Much to my surprise, I was able to start treatment with the two chemotherapeutics (paclitaxel and carboplatin) on Tuesday and return home that evening. Next Tuesday I will receive my first loading dose of cetuximab.

Regarding the bloody drainage from my chest tube referenced in my prior post, I had a liter of fluid drained using a vacuum-like device connected to my catheter and the drainage returned to a healthier apple juice color. I was started on Lovenox again while continually monitoring the fluid output through the tube looking for the color to change back to bloody. Fortunately, the color remained the same and it looks like Lovenox wasn’t the likely culprit. I’m back on Lovenox and so far, so good.

I never thought I’d say the phrase “I’m back on chemotherapy.” But here I am, continuing the fight. Why? Because Lorie slept at a hotel on our second night in NYC to get some much-needed rest and my mind went drifting down memory lane as I sat alone in the patient room at MSKCC. I thought about all the good times we shared, the family we raised, and how much we love each other. I cried and cried. Suddenly, I knew that if chemotherapy could give me even just one more day with her, it would be worth the drug’s side effects.

And yes, there is still the hope of doing better and living longer than expected. The chances are remote, but not zero. More updates soon…

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Join the conversation! 19 Comments

  1. Michael,

    I wish you well. May I ask what dose of Lovenox you are taking?

    Reply
  2. Your why has brought me to tears. May you and Lorie have many more days💞

    Reply
  3. Hi Mike,

    I wish you luck with the new treatment. I have been following your blog for a while and have learned a lot as a result. I also have SCC although mine is from urethral cancer. I have just started treatment with cetuximab and Taxol. I will get my fourth dose of cetuximab tomorrow. Aside from the rash I’m tolerating it quite well. I have had 5-FU twice and it didn’t seem to work so you aren’t missing much in my opinion. Anyway, I wish you the best with the traleatment.

    -Mike

    Reply
  4. We are standing strong with you, Michael.

    Big hugs to you, Lori, and your awesome girls!

    Melissa

    Reply
  5. Best wishes to you and your family, Michael.
    Thank you for your writings, showing us how precious life and family are. As an Oncologist I continue to learn in every way I can and I truly value your writings.

    Steve

    Reply
  6. Michael, I don’t know if you realize how unbelievably brave and strong you have been and are right now. This might seem odd, but congratulations.

    You should be recognized for all you have accomplished with such optimism, grace, knowledge, humor and wisdom, while also being so inspirational as you have selflessly helped so many others on your 2 year journey. You are simply amazing; you are one in a million.

    Please know, you, Lorie and your fabulous ladies are in our prayers EVERY day. Our love and hugs are sent to you. 💕😘

    Reply
  7. Michael, I often wake up very early or in the middle of the night. I go to what I call my “prayer chair.” Today I was in that chair and was praying for your healing. It dawned on me that I often utter words of prayer for u many, many times during the days and nights. I was reflecting on my overwhelming desire to pray for you….without any thought, I asked God if He had specifically “called” me to pray for you. I told God that if He had called on me to pray for you that was very awesome for me.

    Keep fighting and I (along with many others) will keep praying for a miracle.

    Btw, I also realized I have never met you but u have greatly impacted my (our) life.

    Prayerfully,

    Jeri Alvarez

    Reply
    • Jeri – Thank you for the note and also the card you sent a short while back. Your words are beautiful and give me comfort. I appreciate all the prayers and good thoughts. Say hello to Vern for me…

      Reply
  8. Michael- You give me great strength. Your attitude is energizing for me. Thank you. I had similar Chemo for my male breast cancer. If they administer an anti nausea drug at the same time as chemo, the side effects are quite tolerable. A bit of benadryl also helped with any immediate reaction to the chemo drugs. This needs to be titrated to your needs. I, as always, wish you and Lori the very best. You have made the right choice!

    Your friend always,

    Jordan

    Reply
  9. Sibling had chemo and is now being told by new radiologist he has 25% chance of survival. Former radiologist said 85%. So, he’s going for 2nd opinion at CCT. He had two small spots, one on chest, one underarm, both are gone as a result of chemo. New radiation doc says there’s no empirical data that says radiation works. He’s stage 4 with no source tumor (cancer found in nodes in his neck that were swollen). I hope things are more hopeful for him than we are hearing now.

    I read your blog religiously. I believe you are going to make a huge difference to many patients. This is the most frustrating disease, but there is so much we need to learn and you are making that possible. Wishing you the BEST. Hugs.

    Reply
  10. I just called your NY hospital with an idea. Five of six of my family have been diagnosed with cancer. Prostate, Breast, Pancreatic and your SCC Head and Neck. I was thinking of instead of doing genetic testing for those sick to find the gene mutation, maybe we ought to be studying people like me who have dodged the bullet so far. I have been genetically tested for the BRCA1 and 2 and was negative, although cousins have tested postive. I’d like to figure out how we can keep people from being sick. Many studies find the mutations of those who are sick. Why am I the only one undiagnosed? All diagnoses happened before my age, sometimes decades before my age. We shall see if I can be of assistance on the other side of cancer. I know there is no guarantee I won’t get it later on, but why is my lifespan looking longer than my family’s? What’s different? I’d like for them to do a study on family members who don’t get diagnosed to compare them genetically to those diagnosed. We shall see if they are interested. Fingers crossed we figure this out soon, so wonderful people like you and my family don’t have to suffer through so many survival treatment options.

    Reply
  11. Hi Michael,

    I’ve been thinking about you and am following your blog since you gave me a copy of your courageous memoir. It is inspirational to all of us that are working in developing new treatments. I was encouraged that a drug that I was part of helping to develop (Mylotarg for AML) just came back on the market, and another that I fought to keep in development (Neratinib) was just approved; and am hoping that a treatment combination can be found to help you.

    I can guess which nameless Bucks County hospital you were in– when we lived in Yardley my wife was misdiagnosed there several years ago, and after two days of inaction I had her discharged and transferred to Penn, where a proper diagnosis was quickly made, just in time.

    Keep up the good fight…

    Ira

    Reply

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