Welcome to the start of chemo cycle 5! My wife Robin sent me off this morning with my backpack and lunch, to what she calls “chemo camp” a locution which is aptly captured in the top photo. Robin, Thank you for the surprise milk chocolate dove candies and the [peeled] clementine. So perfect, just like my mom used to do when I was in elementary school. 😊
Some of my colleagues have told me that these blogs could be tweaked to be used as a continuing education for healthcare providers, and they may be right – seriously I have not ruled that out with some necessary format tweaking. So, I’ll start with a pretest question which is required for obtaining credits…
True or false regarding Dr. Fudin?
A. I’m living from cancer
B. I’m dying from cancer
C. A lot of “A” above, and a little of “B” above
Much has happened since the last post, and there will be many lessons to learn today for patients, caregivers, and clinicians.
But first, what’s the title all about? Well, I’m not going to give it all away just yet, but I bold typed these throughout, and here’s a summary…
- Dex: For the ongoing dexamethasone deliberation and the final outcome…
- Dexterity: What happens to dexterity when your fingers get numb?
- Determination: That’s obvious; more below
- Disbelievers: People that keep me from traveling (A call out to anti-vaxxers and plea for safety)
- Diced Lemons: Obvious – still chopping them up to make sweet lemonade memories
In the last post, Bet on Life, Lemonade and Maybe Tequila, I discussed the purpose, attributes, and pitfalls of using a corticosteroid and provided some insight for all you readers. Dr. Onc and my Sloan Kettering guy both agreed that they did not favor me staying on dexamethasone. Notwithstanding, I did provide in the last post various ways to reduce short and long-term toxicities (Hmmmm, not sure what that means for me). From a palliative care perspective, us PharmDs often favor “deprescribing”, which would dictate that I stop my simvastatin (for lowering cholesterol), because I’m far likely to die from cancer before I get coronary artery disease than from high cholesterol, and let’s not forget that “statins” can be taxing on the liver, which is synergized by hepatotoxic (medical jargon for liver toxicity) chemotherapy.
At my last visit, Dr. Onc was kind enough to provide a 10-day supply of dexamethasone 2mg once daily and gave me the latitude to taper it as I saw fit, and to call if I had any issues. That last part is always problematic because… Well, you’ll find out soon enough. So, as a “compliant” patient, I took on the task of the taper, and this is how it went (warning – don’t try this at home without the proper medical training!). Remember from my last post, I had a little dex left from my previous RX which was 4mg twice daily, because I only needed 3mg per day to enable me to, eat, drink, and be merry, with that reduced belly swelling.
Dex (from blog title) aka, the Dexamethasone Taper Caper:
Day 1: 3mg, can eat and drink just fine
Day 2: 3mg, can eat and drink just fine
Day 3: 2mg, can eat and drink just fine
Day 4: 2mg & day 3 of chemo with lemon infuser pump disconnect, bloating and misery are back!
Why are symptoms back you ask? Because based on the half-life of dexamethasone, I wouldn’t expect the blood levels to drop until two days at the lower dose – this tells me that 3mg is the lowest efficacious dose for me.
Day 5: 4mg, a little shaky but belly is down, can eat and drink again
Day 6: 2mg plus started meloxicam 7.5mg (where did I get meloxicam – maybe not so “compliant” – explanation below)
Day 7: 1mg plus meloxicam 15mg, can eat and drink just fine
Day 8: 0.5mg plus 15mg meloxicam, can eat and drink just fine
9/12, 0mg dex and remain on meloxicam 15mg once daily, can eat and drink just fine
We’ll come back to the dexamethasone/meloxicam saga…
DEXterity and Determination
On 8/5, I was informed that my planned chemo regimen will continue to include oxaliplatin on day-1 of each cycle for 9-12 cycles. Recall this is the drug that causes neuropathy (tingling and numbness) in my hands which affects dexterity. Nevertheless, I did pick up the saxophone after several weeks, and irrespective, can still find my way around the chromatic scale and blow that horn (getting ready for that October wedding Melissa).
On this same day, the neuropathy and dexterity are bothersome and more extended than last time but grateful that overall, I’m having no major issues. Examples include me removing some frozen bagels from the freezer using just my thumb and forefinger on the small plastic area just above the zip lock. My fingers turned numb in my right hand, and by the time I got to the countertop, something weird happened – I got the same sensation in my left hand within seconds even though my left hand was nowhere near the freezer or the bag. Another thing that happened the day before was something called “first bite syndrome”. I took a bite of room temperature food and I could feel every nerve in every tooth for about 20-30 seconds. The sensation passed after the first bite, and then could eat with no tooth pain. This happened two more times the same day, but less severe.
I met with my Sloan Kettering Oncologist a few days later, and he suggest just 6-treatments total with oxaliplatin, not 19-treatments.
LESSON: It turns out that in a study by Dr. C Tournigand and colleagues, they compared 6-cycles versus 12-cycles. Response rates were nearly identical (58.5% v 59.2%). Toxicity however was significantly less in the 6-cycle treatment group, about 18% neurotoxicity versus about 50% neurotoxicity. Sloan Kettering Onc agreed to call local Dr. Onc so they can sort this out. I will plan to share the article with my providers today, but I suspect they are familiar with that literature. For you medical folks, the citation is:
Tournigand C, Cervantes A, Figer A, Lledo G, Flesch M, Buyse M, Mineur L, Carola E, Etienne PL, Rivera F, Chirivella I. OPTIMOX1: a randomized study of FOLFOX4 or FOLFOX7 with oxaliplatin in a stop-and-go fashion in advanced colorectal cancer—a GERCOR study. Journal of clinical oncology. 2006 Jan 20;24(3):394-400.
So what else happened these last couple of weeks? Well, I decided to get a few logistical things in order for D-day. I don’t want to leave my wife with a vehicle title in my name because she would have to deal with NY State Motor vehicles, as I believe a vehicle registered in someone else’s name needs to go to probate upon death, even with a trust in place. Lesson here? If you have a terminal illness, take advantage of your time to sort things out for your family. And, the truth is, there’s no way in he** that Robin will ever drive my truck. So, we ordered her dream car (anticipated arrival in October), paid off the truck, cleared the lien on the title, AND sold the truck cap (sorry puppies, no more dog-friendly screened in paradise on wheels). The truck cap was removed by and sold to the original installer. Funny thing is, as I was sitting in a garden waiting for them to take the cap of my truck, it was pretty tranquil and a beautiful day outside – I’m thinking, how funny would it be if I got bit by a poisonous spider and died right here.
Answer to pretest here? A. I’m living from cancer.
I scheduled a trip to our Florida home via plane with plan to drive my old truck back to upstate NY. Within a week, the numbers for the COVID-19 delta (abbreviated Greek letter δ) strain became too prevalent (especially in FL) for me to justify the trip. The tickets were cancelled.
Okay, I’m gonna go slow here and take a personal hit myself before I potentially alienate some of my readers. I chose not to have a colonoscopy in my early 50’s and instead received Cologuard in my late fifties, which tested negative. That decision may have been the biggest mistake of my [death]! In retrospect, perhaps my cancer would have been caught earlier and I wouldn’t be going through this. More importantly, I would not be putting my friends and family through this because of a poor choice on my part. To be fair, we’ll never know for sure. If these posts encourage several people to have a colonoscopy when recommended and I save just one life, these posts will be worth the time to create them!
Answer to pretest here? B. I’m dying from cancer.
Now, at the risk of alienating a small subset of readers, I’m going to take a leap here.
I’m calling out the COVID-19 anti-vaxxers and you are officially in my Disbelievers club! If what I’m about to say offends you, I’m willing to take that risk if it saves lives, including your own. And since I took a personal hit above, you deserve what I’m about to say.
Getting the COVID-19 vaccine could save your life and save the life of others.
What are some of the common reasons for not getting the COVID-19 vaccine?
- ‘We don’t know what the long-term side effects are’ (Side effects from vaccines occur 2 weeks to 2 months following the vaccine. Long term side effects from NOT getting the vaccine are DEATH or if you are infected and survive – potential long-term sequelae such has neuropathy, pain, “brain fog”, chronic obstructive pulmonary disease, and more).
- ‘I don’t want to get Covid-19 from the vaccine’ (Good, because it’s impossible)
- ‘I’ve already had Covid-19, so I don’t need to be vaccinated’ (Wrong – you can still be infected, especially with variant strains, but you will not get as sick and not end up in the hospital). Note too that 99.9% of all hospitalizations now are people that have not been vaccinated. Those that have been vaccinated and are infected with the delta variant generally either have no symptoms or they are mild.
- ‘People that were vaccinated are now showing up in hospitals with COVID-19. (Don’t distract from the full facts. These are patients that are in the hospital for reasons other than COVID, and they just happened to have a positive test – they are not on ventilators and they were never admitted for COVID or COVID related symptoms. Try another distraction from reality!)
- ‘There’s no point in getting the vaccine because people end up with COVID infections anyway, so it doesn’t work. And, the pharma industry is using this as an excuse to keep making new vaccines’. (Ridiculous).
- ‘The vaccines have a tracking chemical in them and the government is tracking people” (Ridiculous)
- ‘The vaccine might hurt my fertility’ (wrong)
- ‘It’s none of your business if I don’t get vaccinated’ (It is very much my business! If you get infected, you can infect me. I’m immunocompromised. I cannot travel to my FL home because you are a disbelievers. You may infect my unvaccinated grandchildren who can then spread the virus to other kids who can then expose their parents and grandparents and others.
- ‘I’m young and healthy, so I don’t need to get vaccinated’ (I used to know some young healthy people that are now dead. I hope you are not next).
- ‘These vaccines only have emergency use authorization, not full FDA approval’ (Millions more people have received this vaccine worldwide compared to any requirements for ANY drug ever approved by the FDA, including drugs you most likely have taken).
- ‘My faith will protect me, so I don’t need to get vaccinated’ (God Bless you Disbelievers. I hope you are right. I also hope that if faith protects you and you have any atheist children living with you, that you don’t have to bury them from a COVID death).
- ‘I might not be able to afford a vaccine'(It’s free, free, free).
My personal take and what’s the bottom line for me?
Well yes, YOU have rights and don’t need to be vaccinated. But YOU do not have the right to adversely affect my health. As a certified disbeliever, you and others like you allow the virus to infect you and make the variants that YOU tell me are responsible for infecting vaccinated people. There would be fewer or no variants if the majority of people had vaccines, because a virus cannot survive to mutate into variant strains if it has no disbeliever host in which to thrive, replicate, and mutate. To get a better handle on how disbelievers are driving illness and death, you may review how Iceland is showing the world how to achieve immunity and freedom. It’s not by refusing to be vaccinated.
My thoughts on how anti-COVID19 vaccine disbelievers should be handled in order to ensure safety…
If I employed people that required in-person non-virtual office work, they would all be required to be vaccinated unless there was a bonified medical reason. In that case they would need to provide a letter from their physician who would be scrutinized for current license and credibility – no physician conspiracy theorists will be sufficient for the letter.
If religion is used for an excuse, that person would need to provide a letter from a clergyman from their religion and they would need to specifically cite from within acceptable religious scripture where vaccines are forbidden within that scripture of a bible or similar book – no clergy conspiracy theorists will be acceptable.
To put my actions into words, it broke my heart this week to dismiss our long-term house cleaning person because she is not vaccinated for at least one of the reasons above. Yes, it is her choice and her right not to be vaccinated; my choice to not be exposed to a someone that could infect me, who can the infect my wife, and ultimately my grandchildren (who can’t make the choice).
YES, I am scheduled for my 3rd booster shot in part because of the δ variant which heretofore will be referred to by me as the Disbeliever variant.
On 8/9 my wife and I, and friends visited another set of neighbors at their Lake George “cabin”. It was great! We hung out, had some drinks by the fire at night, and went boating and swimming in the lake – gotta love that IV access port when it’s not in use. There really are no restrictions for submersion in water.
Answer to pretest here? A. I’m living from cancer.
Update on Dexamethasone as promised
Lesson and “How could I do all these activities off the dexamethasone?
As outlined above, I successfully tapered my dexamethasone and replaced it with meloxicam. Why meloxicam and what is that? I’ll try to make this as uncomplicated as possible for the non-medical folks.
- Meloxicam is an NSAID (non-steroidal anti-inflammatory).
- Dexamethasone is a steroid, or a “steroidal” anti-inflammatory.
- In my case, the “non-steroid” anti-inflammatory I chose was meloxicam.
- Traditional NSAIDs (like ibuprofen and naproxen) block enzymes called COX-1 & COX-2.
- COX stands for cyclo-oxygenase, so let’s just stick with COX (not to be confused with previous blog that addresses the fanny pack bulge – just sayin).
- Blocking COX-1 inhibits protection to the epithelial lining of the stomach and small intestine which increases risk of gastrointestinal bleed. It also prevents the production of platelets which are responsible for clotting. These are the reasons why traditional NDAIDs (and steroids like dexamethasone too) have an elevated risk of GI bleed (that’s bad!).
- Meloxicam at low doses(7.5mg) preferentially blocks ONLY COX-2, but not COX-1. Unfortunately, it’s hard to trick mother nature, so the body reacts by producing prostacyclin which elevates the risk of clotting with COX-2 specific drugs.
- COX-2 blockade decreases pain, inflammation, and fever (that’s good!).
- When the dose of meloxicam is increased from 7.5mg to 15mg, it becomes less COX-2 specific, a bit more risk of bleed, and a bit less risk of clotting. This is the reason for the careful overlap, titration, and point “11” below.
- There are drugs called proton pump inhibitors (PPIs) that help prevent NSAID-induced GI bleed. Examples include omeprazole, esomeprazole, lansoprazole, pantoprazole, and others).
- I put myself on over-the-counter esomeprazole because at the 15mg meloxicam dose, it is less specific for COX-2 and therefore has higher risk of GI bleed than the 7.5mg dose. I chose esomeprazole because compared to the others, it is less likely to affect the blood levels involved with my chemo regimen, antiemetics, and simvastatin.
Now, I’ve had difficult patients in my life, and sometimes medical persons are in that category; but other times, they can be great! They can teach me something and I might be able to teach them something – all good!
Communication Breakdown (reminds me of playing “telephone” as a kid)
So, in trying to sort out the dexamethasone taper and get a question answered regarding a COVID-19 booster vaccine, I thought, let’s avoid telephone tag and send Dr. Onc my questions. What I didn’t know is that the responses were coming back from someone else; not a medical doctor, NP, PA, or other provider. Wait until you see how this unravels…
From: Jeffrey Fudin
Date: 08/14/21 8:19 AM
Dr. Onc, I would like to replace dexamethasone with meloxicam 15mg QAM, starting with 7.5mg (1/2 of a 15mg tablet) and then escalate to 15mg daily prior to my Thursday 8/19 appointment. If you are in agreement, could you please send an RX to CVS in xxxx? If you’d like to discuss my rationale for this, my cell phone number is xxx-xxx-xxxx. Also, I’m curious to hear your thoughts on a boaster COVID-19 vaccine – I had my first vaccine in December 2020. Thank you.
From: Dr. Ons office
Date: 08/16/21 9:08 AM
I will forward first concern to nursing..
We are awaiting further medical guidance based on the FDA recommendation, and we have not been made aware by NYS yet of what documentation patients will need, and where booster shots will be offered”
Now, remember, I think this reply is coming from Dr. Onc!
From: Fudin, Jeffrey Fudin
Date: 08/16/21 10:41 AM
Dr. Onc, Thank you for your reply. Regarding your second reply specific to the vaccine, I just wanted to know if you had any objections to me receiving a booster vaccine.
NYS regulation is aligned with the Feds. Several area pharmacies are offering the vaccine. Considering that I receive dexamethasone on day-1 of chemo, and taking into account the nadirs of 5-FU and oxali, I feel that day-6 after chemo (i.e. 8/25 for this cycle) would be the best time to receive it. I simply want to know if you’re in agreement. No documentation is required for active chemo treatment at this time. I have an appointment at CVS scheduled for 8/25. Please let me know if that is okay with you. I’ll address second issue on another reply – characters here are limited.
Now here’s where I get a bit obnoxious because I thought Dr. Onc was just blowing me off in the response. I was wrong, as she obviously wasn’t answering my emails because she was on vacation.
From Jeffrey Fudin
Date: 08/16/21 10:57 AM
Reply-2: Regarding the meloxicam, please don’t have a nurse contact me. I feel that any discussion regarding my rationale may get lost in communications back and forth.
I’ll give you the short version here. Meloxicam at 7.5mg has more COX2 specificity than celecoxib – my fear is increased clot risk due to that. At 15mg it is less COX2 specific.
I’m trying to limit bleed against clot risk. Would start esomeprazole OTC 20mg as prophylaxis – less CYP interactions with the antiemetics and simvastatin compared to other PPIs. I’m requesting RX for 15mg once daily to replace dexamethasone. In case you’re uncomfortable with my discussion/rationale/input, I’m attaching my CV so you have a better idea of my experience/expertise with this. I am awaiting an appt with palliative care. If you would like to discuss, please call me directly at xxx-xxx-xxxx.
From: Oncology Practice on behalf of Onc
Date: 08/17/21 7:59 AM
I am forwarding this to nursing. Dr Onc is out of office this week so this may have to wait until she returns
From Jeffrey Fudin
Date: 08/17/21 10:38 AM
If Dr. Onc is away, who has been triaging and answering these emails? Is this an RN, NP, PA, MA, clerical, etc.?
From: From: Oncology Practice on behalf of Onc
Date: 08/17/21 3:13 PM
The medical assistant has been forwarding these to the RN that works with the doctor and they will make her aware of what is happening when Dr. Onc returns
Note: I still have no idea who I was communicating with. And I have to wait a week? I’m thinking what???? There are covering oncologists and NPs shouldn’t they addressing my inquiries now?!
But, now I know that Dr. Onc has probably been an advocate for me all along.
Today during my cycle 5 visit, the Practice Manager came right to my infusion chair and had an open and frank discussion with me. It was GREAT. She recognizes the need for patient advocates and some changes. I suggested to her that from this time forward, anybody answering an email thru the practice portal, start by identifying themselves, and also that they be specific about which provider, if any, they spoke with regarding the reply and plan. So, great outcome overall for all patients, particularly those that don’t have an advocate.
Lessons here for my medical colleagues. Sometimes it’s just easier to pick up that darn phone and call the patient yourself, or have your resident call the patient.
Answer to pretest here? A. I’m living from cancer. And can be an advocate for other patients too.
The BIG Surprise!
On Saturday 8/14, I woke up and checked Twitter. Holy Moly!!!
I received a surprise tweet from Drs. Bob Twillman and Steve Passik who I learned were scheming behind the scenes for a week.
A little background and drumroll…
Years ago, my daughter Sarah (the quintessential branding machine), encouraged me to continue wearing bow ties at conferences and presentations – “Dad, it’s your brand!” she said. Well how true that turned out to be.
Dr. Twillman started with a Tweet with #bowtiesthatbind. The response was overwhelming and really brought tears to my eyes. This is another reason why people in my situation should embrace life and communicate with everyone they can while they are still around to appreciate it.
A special call out and thank you go out to patient advocate Andrea Anderson aka @aander1987 for her “virtual bow tie” artwork and helping those (including animals) that didn’t have a bow tie to post their pic.
On 8/17 I had a virtual Palliative Care visit with an NP and Social worker. They are affiliated with the same oncology group that treats me. They were great and were interested in the communication breakdown. The NP offered to write an RX for the meloxicam and appreciated the expertise I offered regarding pharmacotherapy – turns out she was a student of mine many years ago. Thank you both!
Visitors, Activities, and Lemonade
On 8/16, Robin and I had a special visitor that we haven’t seen in over 20-years. She was like a second daughter to us for years as she was growing up, and then I suppose life got in the way. The beautiful white flower arrangement in the main photo is from her – so sweet. She doesn’t know it yet, but if she’s up to it, I will ask her to write a heartfelt guest blog about living life, making lemonade from lemons, and some of her life events that can be extremely helpful for this particular audience.
This day was topped off by a dinner with daughter Shirah and granddaughter Aria that finished with a trip for ice cream (always have to get that ice cream fill in before the start of a new chemo cycle because I have cold-induced neuropathy for at least 4-days thereafter).
On 8/17, my college roommate Steve, and his wife Annie visited. How sweet that was, especially since we haven’t seen them in 12 years.
A week ago, three of my friends/colleagues from the Midwest attempted to fly into Albany. One by one, flights were cancelled, connection issues popped up, etc. Unfortunately, these three musketeers didn’t make it, but we had a wonderful Zoom meeting the next day and I got to eat a lot of goodies we got for them in anticipation of their arrival. We will make that live visit happen soon!
Lemonade: Again, the message here is to be with your friends and family now. Make an attempt to see the people you love and haven’t seen in years now, when you’re healthy. Don’t wait until you don’t have that opportunity or for when you are sprinting to hug these folks (fully vaccinated folks I might add) as you approach the D-day finish line. Heck, we all have an expiration date and anything could happen on any day!
Tomorrow my daughter Shirah and I will visit the cemetery to pick out a plot for the big day. I’m excited to get that out of the way and to see if that area can sustain a little lemon juice. Hold on to this thought for a very long time, because it will “come back to haunt you”. You’ll know it when you see it, and you all WILL see it [eventually].
Answer to pretest here? A. I’m living from cancer.
Diced Lemons and Sprinting the Last Lap
Having a diagnosis like mine and receiving palliative chemo can provide an opportunity to win the race, or at least admirably place in your final years on this earth. In speaking with palliative care clinicians this week, it was cathartic (well, it didn’t really make me poop) to hear their supportive and positive perspective on the things I’ve been doing, including their read of my lemonade blogs. For me, preparing family and friends for the final day (even if it’s years – fingers crossed), teaching the world about the advantages of advanced planning, and keeping a positive attitude can all have a clinically positive impact during your last sprint towards the finish line. This is especially true if you’re the luckiest man in the world (yes, I still believe that even with this diagnosis) as you watch all your colleagues, patients, pain advocates, friends, and family cheering on the sideline during the final mile(s). I shall continue to dice those lemons and create lemonade. All of you readers have become a huge part of my lifeline, and for that, I am eternally grateful. THANK YOU!
The final post-test answer is “3”
True or false regarding Dr. Fudin?
- I’m living from cancer
- I’m dying from cancer
- A lot of “A” above, and a little of “B”
As always, comments are enthusiastically welcomed. I will not address vaccine conspiracy comments, nor will I post comments that contain false or inaccurate information. If you choose to display your “disbeliever-ness” you may comment on one of my COVID blogs such as COVID-19 Vaccine Summary and Updates.