This will be my final lemonade post until my next round of chemo in two weeks. But, after the overwhelming response from Tuesday’s post, I want to share my gratitude for the heartfelt, often tearful (readers and this writer alike) outpouring from so many of you. I spent hours reading through comments here and on Linkedin, Facebook, FB IM’s, Instagram, direct mobile text messages, and phone calls. All that time spent was well worth it and has served to fuel a fire within me to share my experiences throughout this ordeal with a focus on teaching and learning for patients, families, and the clinicians that care for them. Subsequent lemonade posts will be one time each two weeks to be respectful of your time.
At the end of this post, I will share bullet points for patients and their families (remember, the patient always comes first), and then for the clinicians that care for them.
Prior to my Stage IV Colorectal Cancer diagnosis, my beloved son-in-law Andrew often would gest with the phrase “Dead man walking”, a line from Jim Carey in Liar Liar. This utterance might be heard after a long day at a family gathering and perhaps a couple of glasses of wine. He’s a funny guy, but I’m not sure we’ll hear that too much anymore, except maybe from me. I can picture him in his NJ beach home saying “dead man walking” after a 10PM family board game, as we all collect the game pieces following a night of laughs. And there I was wearing one of my “Life is Good” tee shirts pictured above (representing me and my Siberian Husky, Meeko).
My chemo regimen is FOLFOX, an acronym that stands for three different drugs. These include:
- FOL: Folinic acid (the active form of folic acid) which synergizes* the activity of #2 below, but which also provides various positive affects to normal cells throughout the body.
- F: 5-fluorouracil often abbreviated 5-FU is a chemotherapeutic agent that affects DNA.
- OX: Oxaliplatin is a chemotherapeutic agent that affects DNA, but by a different mechanism that 5-FU.
*For my pharmacy nerds, the pharmacological mechanism of action for synergy between folinic acid (Leucovorin) and 5-FU (or any fluoropyrimidines) is stabilization of thymidylate synthase (TS) in inactive complexes with 5-fluoro-2′-deoxyuridine-5′-monophosphate (FdUMP) and folate cofactor. This trapped enzyme creates an inactive form which essentially blocks the reaction substrate 2′-deoxyuridine-5′-monophosphate.
For me, Day-1 of chemo happens in the chemo infusion room where I receive all three drugs listed above. After the infusions, I receive 5-FU alone in a small plastic bubble which contains a balloon that houses two days-worth of 5-FU. That mini-infuser requires no battery or electricity – its infusion rate is determined by the balloon and the filter in the tubing. It is about the size of a lemon, and in fact is yellow – how ironic. The tubing enters your vein through a central line catheter (unlike one you typically see on a patient’s arm from an IV bag). That central line IV access is generally through a port (i.e. Port-a-cath) that is surgically implanted beneath the skin, or another spaghetti like line that hangs out of your upper chest (i.e. Hickman Catheter). These both have catheters that are fed into a large bore vein that feeds directly into the right atrium of the heart.
Stardate 16232, A LEMONADE DAY:
Two days ago I posted from the chemo infusion suite as I was receiving the concoction of 1-3 listed above, in addition to pretreatment of two antiemetics (anti-nausea drugs), and dexamethasone (a potent steroid that reduces inflammation and synergizes (makes more effective) the two antiemetics. I’m happy to report that I had no nausea or vomiting on day-1, or any side effects for that matter.
Yesterday was day-2, and I was home for the day with my little lemon infuser. Remember Stage IV colorectal is not curable, and chemo is palliative (supposed to make you feel better). I don’t believe it will make you feel better on day-2. Would I get sick-who knew? What prevented that? ALL OF YOU! I was so overwhelmed and preoccupied with the love from so many family, friends, colleagues who blend into a single Venn Diagram, I couldn’t possibly think about illness, my length of days on this planet, or toxicity from chemo. And, besides the support of my wife, my daughter-in-law (actually, my fourth daughter if we’re being honest) is here for the week. And her husband (my son Jason), is running #whyhotel and watching the two young children back in DC after spending over a week with us.
What happened on day two? Three full meals, and the first time I was able to eat an entire bagel in two months, and a fabulous dinner compliments of our neighbors (which seem to show up every night).
What did I do yesterday while my little lemon infuser was delivering 5-FU into my blood? Let’s start with the simple things we take for granted; eat, poop and pee. Those were not a fait accompli at the start of my ordeal.
- I had three lovely meals with my wife Robin and daughter-in-law Lindsey.
- I filled my vehicle with gas.
- I walked the dogs (grand doggie is visiting) with Lindsey.
- Since I’m told to walk, I decided cutting the lawn with a self-propelled walking mower would fit the bill.
- Picked up an antiemetic prescription (more on that below).
- Did everything a good patient should do – lessons to follow.
- Drank fluids because it was hot out while cutting the lawn.
- Put on sunscreen and wore a long sleeve tee because some of the chemo causes photosensitivity (sunburn).
If like are like me, you are intolerant to ANY drug that antagonizes dopamine (not so rare), you are not a good candidate for some typical and less expensive drugs used to treat or prevent emesis (aka vomiting). Some of these include metoclopramide (Reglan), prochlorperazine (Compazine), olanzapine (Zyprexa), haloperidol (Haldol), and others, all of which are also FDA approved for other medical conditions. The anti-emetic drugs given in the chemo suite last a couple of days, and they have a different pharmacological mechanism than those listed above in this paragraph. They include certain 5-HT3 receptor antagonists and neurokinin-1 receptor antagonists. When my son arrived at the pharmacy last week, there were two anti-emetic prescriptions awaiting; 1. Ondasetron (Zofran) and 2. Prochlorperazine (Compazine) – OH NO!!! I CAN’T TOLERATE ANY drug that antagonizes dopamine as indicated on top of this paragraph. After inquiring, I was offered lorazepam (Ativan) – that is not an anti-emetic, more to come in clinician lessons below.
What are today’s lessons (patients first please)…
- Not everybody has the same side effects from chemo. Some do great, some do poorly, and some are in the middle. Don’t plan on cutting your lawn or running a marathon – for you, sleep might be good.
- Different people tolerate and respond to various drugs (chemo, anti-emetics, pain meds, and all other sorts of drugs) differently in part because of their disease, but also because of genetic factors, how we metabolize them, and drug-drug or drug-food interactions.
- Chemo regimen combinations are very different for different cancers, They have different toxicities and properties, including propensity for nausea and vomiting, photosensitivity, efficacy, and organ toxicity.
- Be sure to ask your doctor and pharmacist about photosensitive drugs (whether or not you have cancer) and if you’re going outside, wear a long sleeve tee or appropriate upper garment and use sunscreen on all exposed areas.
- Many, if not most chemo drug toxicities are cumulative and certain side effects like neuropathies or organ dysfunction could get worse over time. Discuss these issues with your doctor and pharmacist.
- Don’t get frustrated if you can’t do anything but sleep – chemo can knock you on your butt. It’s good to rest or sleep if you need to. ASK YOUR DOCTOR!
- If you participate in activity that can potentially expose your central line, make darn sure your medications, your IV line, and the central line to your heart are well-protected. If that line gets infected, you could be looking at a dangerous infection we call sepsis, and that can be fatal.
In the photo below, I am wearing a fanny pouch that is holding the “lemon infuser”. So, just to be clear, don’t get too excited to think that chemo causes a bulge in your pants – just sayin.
- When a patient asks “how long do I have on this earth”, it’s okay to say the average survival is xyz months or years. But please make it clear that those averages include all-comers. It includes patients without support systems and those with support. It includes well-educated and less well-educated patients, some of whom may have difficulty processing and incorporating a whirlwind of directions from multiple clinicians of various specialists at the same time (surgery, oncology, palliative care, radiation oncology, etc.). It includes otherwise very healthy patients and those with multiple medical conditions that are taking lots of medications, which increase risk of drug interactions and poorer outcomes. It includes those that are compliant with everything they should do (taking medicines correctly, following strict diets, exercise, etc.) All of these folks averaged together leaves a large standard deviation. So, explain these things and engage professionals to help skew your patients to the life side of that curve if possible.
- Do not say “you have maybe 2 years – I advise you to get your life in order. A better way of saying that is, “I can give you an average survival for all patients with your type of cancer, but this varies based on many factors (as outlined above). The advantage you have is that you may choose to spend some of your quality time figuring out financial things and discussing your wishes with your family. For this we can refer you to a palliative care specialist now or after you’ve had time to process all that you are going through emotionally.
- Listen and learn from your patients, especially if your patient is a pharmacist or other healthcare professional, and even more especially if that pharmacist completed a fellowship in heme-onc.
- Anti-emetics: Lorazepam is a benzodiazepine that when compared to others, causes more anterograde amnesia (the inability to form short term memory). It therefore has the indication for “anticipatory vomiting”, a phenomenon that occurs upon entry to the chemo infusion suite that causes anxiety and panic leading to nausea and vomiting. There is no role for this post-chemo at home, because the anticipation of receiving chemo has passed. In fact, it could be dangerous because if the patient fell asleep and vomited, it could result in aspiration pneumonia in a patient that is immunocompromised from chemo. Standard protocols are great to prevent emesis, much like the ones I received on day-1, especially since they last up to 2-days. But, having both ondansetron (a 5-HT3 receptor antagonist) and a neurokinin-1 receptor antagonist at home for backup (in my case, aprepitant, hence my drive to the pharmacy yesterday) is a great option for a person that can’t tolerate traditional dopamine antagonists. I wanted to be sure I had a backup in the house as the anti-emetic blood levels that I received on day one of chemo started to drop. Here I am on day three, my last day of chemo cycle number one, and happy to report, no nausea or vomiting.
- For pain specialists, surgeons, and most especially opioid stewardship clinicians in the hospital setting, when a patient is in the hospital facing major abdominal surgery, nobody there should start a conversation with, “We will keep you comfortable with “a,b,c,d,f” drugs, but we try not to use opioids. If things get bad, we will add tramadol (Ultram), and then maybe if necessary we will give you an opioid. And, opioids decrease GI motility, so we certainly don’t want you constipated.” There are a few major flaws here. The first is that the patient just heard that they will have to suffer immensely in order to receive an opioid, and they will feel inadequate or insecure for asking. The second is that tramadol is partial agonist opioid that is more constipating than any full agonist opioid, and it’s binding affinity to the opioid receptor is 6000x less than morphine – that is equal to the dextromethorphan in cough syrup. Tramadol has 5 metabolites and relies on phase I metabolism through the cytochrome P450 system by three different enzymes, and it is not active until it is converted from tramadol to O-desmethyl-tramadol by CYP2D6. Therefore, make sure that your patient isn’t on a CYP2D6 inhibiting drug that will completely eliminate any potential analgesic benefit.
- For the outpatient receiving chemo that has pain, OTC NSAIDs and/or acetaminophen may do the job. But, let’s not forget that many of the chemo drugs are quite toxic to the liver and/or kidneys, or at the very least tax these organs heavily during treatment. NSAIDs as you well know, can increase bleeding risk in healthy patients – but your patient may have decreased platelets from chemo which elevates bleeding risk. NSAIDs also increase risk of kidney dysfunction, a toxicity shared with many cytotoxic chemo drugs. Acetaminophen toxicity will increase if the chemo regimen is highly hepatoxic. The message here is that the safest analgesic drugs and drug combinations should be used first. That may be OTCs, it may be OTCs with very low doses of REAL opioids, or it may be single entity opioids without acetaminophen. Or it may be something else altogether.
In summary, I look forward to disconnecting from my “lemon infuser” today (day-3) and enjoying some lemonade with family and friends over the next two weeks. While previously I liked to wear my “life is good” shirt or cap around the neighborhood or the beach, it has a different meaning for me today. Before I was just hanging out enjoying company, the weather, the breeze, maybe palm trees and sand. Now this attire has a whole new meaning – life is really good, far better than the alternative. I’ll be back in two weeks, because life is good, and together we can make it better!
As always, comments are welcomed with enthusiasm!