It’s been quite a week and there have been many changes and lessons from which patients and medical providers alike, can learn.
Let’s start with last week. I’ll try not to make you cry [too much] this time around. It was a Thursday, 7/1: The first time my wife Robin left town since our life was turned upside down with cancer. I could tell she was nervous – like leaving a puppy behind, but it wouldn’t be for long. She was headed down to my daughter, Sarah’s (and son-in-law, Andrew’s) beach house in Bay Head NJ with my youngest daughter Shirah and my sweet little granddaughter Aria in tow. Not to worry though, it would also be my first trip. My son-in-law (aka little Jeff B), Shirah’s husband picked me up a few hours later so we could meet the family at Bay Head (more on that drive below). We stayed for several days and returned on 7/5. We spent time with Aria, and her cousin (Sarah and Andrew’s daughter, Anna, aka “Silbie”). Watching the two of them play and interact was the best medicine ever! Of course, my wife Robin, daughters, sons-in-laws all count as adjuvant medicines because they helped synergize the soothing from all the granddaughter and family love! Make no mistake though – they kept after me to eat, hydrate, and walk while respecting some needed short rest times (probably from low iron and anemia).
Jeff B made it a fun ride down. In the past, and currently actually, the two of us have written well over 30 articles on pain management related topics since his early interest in our specialty of pain therapeutics. In the backdrop, he has developed a hobby of writing fictional romance novels – I know, sounds crazy, but he loves it. Long story short, he wants to write a book about me. Apparently, he’s enamored about connecting the events of my early career in oncology-hematology with how it impacted my career and notoriety in pain therapeutics in terms of resilience and fortitude. More particularly, he wants to connect the dots on how the events of harassment against a federal whistleblower (that’s me) shaped my career (another lemon to lemonade story in and of itself). He is quite insightful though, as I do believe that those earlier days immeasurably impacted my career and the safety of patients worldwide. Bad as it was, I largely credit the VA for blindly catapulting me into what I became professionally. Us Jeffs spoke about some incredible stuff surrounding my disclosure of cancer chemotherapy research violations and veterans that suffered or died as a result. He believes that how this unwound, the federal agencies that were part of a massive coverup, paranoia, patient deaths, and retaliation against me to the point of death threats are the makings of an interesting book. Hats off the Jeff B, as I lost the energy to pursue such a book many years ago so that I could move on professionally and for the psychological health of me and my family. I will say this, Jeff B sure kept my mind off the actual travel. Jeff B, you are then son pharmacist (although there is my daughter Hannah) I never got – YOU GO MAN! Thanks for getting me to NJ with fun, distraction, and a little stress from the past. I’m looking forward to the book!
7/3: Woke up in the middle of the night with no pain, but my mind was wondering. I was accepting that this could be my last summer visiting Bay Head, but I still plan to challenge the odds, at least for another summer or two down there. I didn’t cry though – instead I thought of my new bucket list, since there is really nothing left on a long-term bucket list -that stuff would just be gravy on a perfect life. Although, I do admit that I was looking forward to reaching the ripe age of 79 and having a beer with my grandson Jonah at our Amelia Island Beach home – who knows, miracles do happen.
Here’s what I call the acute bucket list…
- See my father who I haven’t hugged in about two years because of COVID and celebrate his 90th birthday coming in August. This will happen soon.
- Attend that jazz concert that son-in-law Kris keeps talking about.
- hold new unborn grandchildren (as many as possible).
- hug as many family and friends as possible (Thank you Leigh for the lemon tree gift used in this post).
- thank everyone I can for inspiring me to get through my illness.
- tell as many people I love that I love them;
I finally fell asleep again and was awakened in the morning by my two granddaughters playing and laughing. I was still in bed with no physical or emotional pain. I’m now guessing that my daughters and sons-in-laws went for their usual 3-6 mile run along the shore, an activity I often joined in on my bicycle (this will happen again though, I’m “shore” of it). I know today I can’t do this most probably due to decreased muscle mass, low hemoglobin and a very low iron level, translation quite anemic (more on that below). I also know that next week I’m prepared to have a serious talk with my local oncologist about certain expectations, and for my readers, there are lessons to be learned. This conversation will include unlimited access to IV hydration if clinically indicated, blood transfusions and if needed IV iron. My iron is so low, you’d think it was still in the earth. Other issues are responsiveness from the office and professional staff, all of which can impact patient outcomes. And remember, the average patient probably wouldn’t have this conversation, hence the averages for survival when you’re just another cancer patient will vary.
So, what are some lessons this week, and there are a lot!
While in Bay Head, I needed to take care of three incision sites from my IV port removal, from the new port, and from the access point just above the new port, 3 separate areas all of which have dissolvable sutures and each of which have three steri-strips, all that need to be kept clean and dry. I was told by two nurses and an NP simply to place Saran Wrap over the dressings and tape it to my skin so that I could shower after 48 hours.
Lesson learned: This does not work! You cannot seal Saran Wrap from the top with any sort of tape if it is near your neck or any contoured area, unless maybe you use heavy duty duct tape. Anybody giving this advice should try it themselves. What does work? Take off all dressings except for the steri-strips and use waterproof 3-inch band-aids (a lemon-aid trick) being careful that only the pad of the band-aid is touching the steri-strips. This will work for any sutured area. If you need to protect a port, which forms a small bump beneath the surface of you skin, make a crisscross with two 3-inch band-aids. Here’s a photo.
7/6: Blood return in new port is fabulous, and pre-chemo bloodwork is drawn for the lab. Next, I transition to a waiting area. There I sat with three other people; 2 full tactically armed police officers with a prisoner in bright yellow striped clothing restrained with ankle and wrist chains and cuffs. That was interesting, but not my first of such sightings having worked in a hospital. Hey, everybody is entitled to medical care – that’s who we are as humans.
I’m going to admit, I was quite fired up to have a serious conversation with my oncologist, but it was like a switch turned on in my absence – a complete 180-degree change from what I expected. Now I’m thinking, this doctor must have gotten my messages. It turned out to be a very productive and cordial visit with many discussions, collaborative decisions, and professional collaboration.
The first questions/discussions asked to me were about how I felt, the results of my recent ultrasound to the belly to check for fluid in the peritoneal space, and pain levels.
I was told that although there is obvious fluid in the peritoneum, it was relatively small and unchanged compared to previous imaging. The oncologist’s (let’s call this person Dr. Onc) thought was that the bloating was from tumors, not from fluid – a good thing for many reasons I won’t get into here, but also good because the chemo should eventually shrink these tumors which will improve comfort and make it more pleasurable to eat.
Many lessons below…
We talked about pain management. I informed Dr. Onc that my pain was well-controlled on around-the-clock ibuprofen at 600mg 3-4 times daily, with intermittent acetaminophen. Dr. Onc was quite concerned about the dose and the fact that it could have an increased risk of bleeding.
Lesson: Dr. Onc is correct about bleeding risk with chronic NSAID use which is a potential problem with any patient, particularly a cancer patient. But 600mg four times daily is not the maximum prescription daily dose – that is 800mg four times daily. An important learning item is that drugs like cimetidine (Tagamet) or omeprazole (Prilosec) are protective against NSAID induced ulcers. Pharmacologically cimetidine is a histamine-2 receptor blockers (H2RBs) which basically reduce acid release into the gut. Cimetidine and similar drugs like famotidine (Pepsid) only protect against NSAID-induced duodenal ulcers, but not gastric. Omeprazole, and similar drugs like pantoprazole, esomeprazole, and others, all protect against both NSAID-induced gastric and duodenal ulcers, but they have a higher risk of drug-induced issues with long term use. All of these drugs, unlike H2RBs are known as proton pump inhibitors (PPIs) and they basically shut off the biological pump that produces acid in the gut. None of this protection is 100% though!
Lesson: Now we’re going to get technical! So, let’s say I wanted to stay on chronic NSAIDs, not an ideal choice according to Dr. Onc. Understandably by Dr. Onc, although my platelets (these are needed to form clots and stop bleeding) are very elevated, with cancer many of these platelets are dysfunctional because the bone marrow is putting them out so quickly to combat tumors. I could take PPIs as discussed above, but (now I’m going to put on my therapeutics hat) all of them inhibit various of the same and/or different liver enzymes that are otherwise needed to metabolize (break down) most of the anti-emetic (anti-nausea) drugs that I receive to prevent nausea and vomiting from chemo. These enzymes are called cytochrome enzymes (commonly abbreviated CYP450 enzymes). For example, pantoprazole inhibits CYP2C9 and 3A4, esomeprazole does the same but has less effect on 2C9. Anti-emetics fosaprepitan and aprepitant undergo metabolism by CYP3A4. Anti-emetic palonosetron is primarily metabolized by CYP2D6, but also undergoes metabolism by CYP3A4 and CYP1A2. Anti-emetic ondansetron is metabolized by CYP3A4, CYP1A2, and CYP2D6. What does all this mishmash mean? Basically, if I want to use a PPI to protect against gastric bleeding, all of my anti-emetic blood levels could be elevated – since that elevation is unpredictable, there could be inherent risks for increased toxicity from the anti-emetics. It is true that I could carefully select the best PPI in terms of which enzyme it would affect, but then there’s this…
Lesson: What if I chose to use a COX-2 selective NSAID which has a lower risk if gastric bleed? These drugs include celecoxib (Celebrex), meloxicam (Mobic), and etodolac (Lodine). But here’s some food for thought. All of these drugs skew the clotting cascade in the opposite direction because the body has checks and balances. That means there is an inherent risk of developing a thromboembolism with these drugs in the best of circumstances. Now consider that cancer patients like me often have elevated platelets and there’s no way to determine which are functional and which are not – hmmm, that could be a fatal problem. And then there’s this; many of the PPIs inhibit CYP2C9, the major enzyme responsible for breaking down celecoxib (hmmm, higher risk of clots). So, you see, we always need to balance benefits against risks. This is the reason why clinical pharmacists should be in every clinic, so that medical providers can work in tandem with physicians and other prescribers. This is not to discount those pharmacists in the community setting – they have to deal with these issues every single day!
Dr. Onc actually brought up my hydration concerns before I mentioned it. I was offered two days a week for scheduled IV hydration that would be on the calendar. Now no need for phone tag – if I felt hydrated enough, or it was inconvenient, all I need to do is call and cancel my appointment. Dr. Onc broached the subject of IV iron but wanted to first try a transfusion and for me to continue oral iron as long as it didn’t cause constipation.
Lesson: Perhaps Dr. Onc was listening, or maybe something else inspired this collaboration, but whatever the reason, I learned to have more faith this time around. Other discussions included MY concern, not so much of NSAIDs, but of acetaminophen and elevated liver toxicity because of highly hepatotoxic (toxic to the liver) chemotherapeutic agents, something I feel often escapes oncologists, especially when prescribing opioids that contain acetaminophen. Dr. Onc’s preference was opioids, and I think you all now should see why that could be the safest option. For my type of pain though, NSAIDs will probably be more effective (for now!), although that could change depending on chemo response or lack thereof. I made is clear though that if I need to take chronic opioids, I insist on being on a PAMORA (peripheral acting mu-opioid receptor antagonist). These drugs block the receptors in the gut that combine with opioids and cause constipation. They are not laxatives, instead they prevent constipation by the exact mechanism by which opioids cause it. Constipation is not something I need for all the reasons discussed in my previous blog. Dr. Onc was in agreement with this approach. Now, back to the of metabolizing enzymes mishmash (a message for my pharmacy and medical colleagues). It turns out there are three PAMORAs on the market, and they all work beautifully. They include Methylnaltrexone (Relistor), Naloxegol (Movantik), Naldemedine (Symproic). So, what’s the difference? Movantik is contraindicated with any drug that is a strong CYP3A4 inhibitor; Symproic has a strong warning about using it with such drugs, and Relistor has no such warning because it is not metabolized by CYP3A4, and it has no known drug interactions with respect to CYP metabolism. I wrote an article about this with my long-time friend and colleague, sort of my “G-string”, Dr. Jeffrey GUDIN, which you can read here. (Peripheral Opioid Receptor Antagonists for Opioid-Induced Constipation: A Primer on Pharmacokinetic Variabilities with a Focus on Drug Interactions)
We talked about the possibility of using dexamethasone for palliative pain control and to help energize me for some upcoming gathering with friends and family. Dr. Onc was in agreement with this too, but short-term intermittently. More on this in an upcoming blog.
And finally, 7/7 was transfusion day. A small but important lesson to be learned here. The intent was to receive a transfusion through my central line. Yes, I had my portable chemo lemon infuser attached. I’m like, what’s the big deal? Just detach it, infuse the blood, and reattach it. I’m scheduled for IV hydration tomorrow anyway, so the 2-hour blood transfusion time will be exactly offset if I receive my IV hydration over 2-hours tomorrow prior to disconnecting the lemon infuser. Policy always seems to trump common sense. This was not an allowable option – the blood needed to be transfused through a peripheral arm vein because they would not stop the chemo. But remember, I’m dehydrated – last time this happened, three nurses stuck me 7 times. So, here’s the deal I offered to the very polite nurse. You get one chance at a vein and if not successful, I’m happy to reschedule when I don’t have on the chemo infuser, or can you please send someone here with a doppler to view and access a deeper, larger vein with accuracy which will avoid the dartboard approach. DEAL! It took a while for him to get there, but no pain and a big gain!
Lesson: There’s more than one way to access Jeff (and you too, if you are ever in a similar predicament).
Summary: This the longest post I’ve ever made here, and I realize it has technical stuff that some may not fully comprehend. I’m looking forward to the next lemonade blog and promise to keep it shorter.
But the two most important lessons here are:
- Being with loved ones is the best medicine, and those interactions are the greatest kind ever.
- Drug interactions, unlike personal interactions can be harmful or fatal. They can be mitigated or prevented by a pharmacist, and you should never “refuse counseling” when receiving a new prescription from your community pharmacist.
- Lemon-aid (aka 3-inch band-aids) may have saved me from an infection.
As always, comments are welcomed with enthusiasm!