Steel is an alloy of IRON and carbon containing less than 2% carbon and 1% manganese and small amounts of silicon, phosphorus, sulphur and oxygen.
This may be the first week in a while that I shed no tears – maybe there is an advantage to dehydration. I can’t make tears? I know my diagnosis; I know my prognosis; I know my correct doses; and I will make the “mostest” of whatever time remains in my life.
Approximately two weeks have passed since my last lemonade post and I’m rounding cycle 3 of chemo starting today 7/20. And let me say, the lessons for readers (and for me) along this journey just seem to continue!
On 7/7 (Happy birthday oldest daughter Sarah) I had my first ever blood transfusion which I discussed in my previous blog. Starting 7/8, I had the pleasure of visits from two out-of-town pain colleagues both of whom are close friends. It’s so heartwarming that they took time out of their busy schedules to travel to Upstate NY and spend hours with me. One is an anesthesiologist, the other is a clinical psychologist, and I am a pharmacist. I know both of them from decade long collaborations on nationwide teaching activities, publications, and various projects. Then on 7/10, we were treated to see my father-in-law Sam, his wife Ellen, and her son (who I haven’t seen in years!).
The three of us have very different educational backgrounds and clinical expertise. The lesson here is that it takes a village of people to treat pain and to educate others on how to do it right. There are of course many others I have visited with or plan to visit with and/or who I have worked with that variously offer other expertise in pain management including physiatrists, neurologists, acupuncturists, chiropractors, and physician extenders such as Nurse Practitioners and Physician Assistants, and many others. In fact, last week I had dinner with two of my dearest colleagues for years; both Nurse Practitioners that helped shape the pain management clinic where I spent most of my career. Over the last two weeks my father-in-law visited with my mother-in-law’s son, and we were joined for dinner by my sister-in-law and her husband. The next day, a local colleague/friend stopped by. And last weekend it was my brother-in-law from Austin TX. Let’s just say, I’m loving the love! It seems that I have two new fulltime jobs (in addition to my regular pain work) that includes doctor visits and my favorite – visiting with so many special people in my life.
There are lots of lessons this week from various experiences.
Lesson: 7/14: Left arm is swollen. In my last blog I talked about a blood transfusion received exactly a week ago. Now I’m thinking, could it be a deep vein thrombosis (DVT) in the arm from the transfusion? Why would I even think that? Recall that the transfusion clinic was not permitted to use my central line, so I insisted on a doppler to find a vein in my arm (mostly because I’ve been dehydrated, it’s difficult to find a vein, and I’m not sure the vein would hold up through a transfusion – that would literally be a “blood bath”). The doppler allows a clinician to accurately find a deep vein – yes, you can have a DVT in the arm, side effect of which could be death. Now the usual communication barriers start to unfold…
My left arm is swollen upon awakening which seems to have gotten a bit worse over the last 3 days, but I’m thinking probably not DVT because there’s no pain or swelling. My wife, a physical therapist that at one time specialized in lymphedema therapy was thinking, maybe lymphatic drainage problems. I’m thinking, maybe vascular and lymphatic system. I’m also thinking, maybe I should just not think at all – I should call the oncology clinic, after all that’s why they are there. They always say to call anytime 24/7.
First thing in AM, Jeff calls the oncology office.
Receptionist answers and I explain the arm swelling. Response, “I’ll let Dr Onc’s nurse know” (eye roll – here we go again).
One hour later I receive a call from nurse. Place heat on the area for 1 to 1.5 hours and repeat 3-times. Any problems, let us know. I did this as I was recording a lecture for a PainWeek Advanced virtual education program. Visit the PainWeek website for all sorts of learning opportunities from world renowned experts. I love them all!
1 hour later, I receive a call from my Memorial Sloan Kettering (MSK) Oncology nurse (my second opinion oncologist). He said, Dr. S. wants you to have your belly tapped to take out the fluid after he reviewed your ultrasound. I’m thinking, ah, this is great, I may be able to eat more. Around noon, I called back my local oncology office. I was very specific with the receptionist: 1. “I placed the heat on my arm and it got worse after 1.5 hours, but it doesn’t hurt”. 2. My MSK doc contacted me and said blah, blah, blah… paracentesis (fancy name for removing fluid from the abdomen with a needle). “Please tell the nurse both of these updates #1 and #2”. Answer: “Will do. Have a nice day”.
The nurse called me back and said, “I understand your arm is worse”. I said, “Yes, after 1.5 hours of heat application it became more swollen, so I stopped applying heat”. Her response? “Didn’t you hear what I asked you to do and apply heat over several hours?” My response, well yes of course, but why would I keep placing heat on an area that seems to be getting worse when it is warm? (eye roll)
Then I asked her if she got the message about #2 above regarding the paracentesis. Response, “I don’t know anything about it. (eye roll again). Maybe the eye rolls are a side effect of chemo!
At 2PM, my wife receives a call that I should come in and see the covering oncologist at 3PM. He felt the arm was fine. And, he had already placed a request for scheduling the paracentesis (Wow, lesson to me here is that the communication between MSK and local oncology group is like warp speed compared to a patient call – maybe that’s the way to go from now on). His explanation was twofold. First, he said there was probably some leakage out of the peripheral vein when I received blood last week (recall from my last blog that I wanted them to disconnect the lemon infuser and use my central line), and secondly, when they removed the old port (left side of chest), it probably caused some vascular trauma. Both of these things could have been prevented had common sense been used for the red cell infusion, and if the central line IV port was properly placed to begin with – interestingly four different clinicians at different practices told me that they see port problems regularly when they are not placed by an interventional radiologist or a vascular surgeon. In fact, not only were they all not surprised, but they expected it. Moreover, the insurance claim for that replacement was $7500. If I was the insurer, I’d be changing my policy so that if this happens, the first placement fee is credited back to the insurance company. But no worries, why? Because I sat down to do my weekly bills and learned that each chemo treatment is billed to my insurance company at about $18,000.00. Come on guys, I know what these drugs and supplies cost – not even in the same universe! I realize they need specialty nurses and there’s a cost for pharmacists admixing the drugs under strict sterile and protective environments to prevent exposure to cytotoxic chemotherapy, extra precautions and equipment, but still… No words for this, except that a “for profit” healthcare system seems criminal to me. I then remembered a story from my early oncology days as a young pharmacist when attending a tumor board meeting. That meeting consisted of all sorts of medical providers (oncologists, hematologists, pathologists, surgeons, radiologists, radiation oncologists, pharmacists, nurses, NPs, PAs, and other clinicians). Here we discuss patient cases and collectively decide on the best treatment course. This remains standard practice today. What was different back then is that the family was invited in after the professional discussions. Before that happened one day, there was a heated argument between the thoracic surgeon and the oncologist. After the family came in and discussions of options were presented (lets say a bit biased in the presentation), the thoracic surgeon (about 6’3” in his 70’s) stood up with all present (including the family) and said, “I’ve about had it with this bullshit – more people in the country make a living from treating cancer than people who die from it”. As a young pharmacist just a few years out of my fellowship, that stuck with me for almost 40 years.
Lesson: Getting back to the above, I decided to do a little research and you know what? Revenue from treating oncologic disease within the United States in 2020 was 150 billion dollars. It makes you wonder what the incentives are to keep costs down to a reasonable cost or actually cure this disease. And that number does not include costs to society.
But, my covering oncologist was really great. He agreed that I needed IV iron and he placed the orders for that in collaboration with my regular Dr. Onc. The IV iron will be scheduled to be given on my last day of each chemo cycle. I explained that one of my scheduled dates is Thurs thru Sat unlike my usual Tues thru Thurs, and I had a feeling that they would not give IV iron on the weekend. He confirmed that was correct. I asked, can’t I come in on day two of chemo (remember I’m at home with that lemon infuser in a fanny pack)? My suggestion was that they disconnect it and infuse the IV iron, or that on day-1 of chemo when I’m actually in the infusion suite, give the IV iron before hooking up the lemon infuser for the 2-day take home chemo. His response, “Hmmm, probably not because they may not be chemically compatible for an infusion – we’ll have to check with the pharmacist.” (eye roll again, am I chopped liver?). Don’t get me wrong, I am thrilled and respect that they rely on their own pharmacists for physical and chemical compatibility of the IV drugs – it’s safe and the right thing to do. Lesson for readers: Pharmacists don’t just count pills whether they work in an oncology/hematology practice, a hospital pharmacy, at patient’s hospital bedside, in a clinic, and yes, in a community pharmacy. Pharmacists are the most grossly underutilized clinicians in the country. It’s despicable. Oh, and there are pharmacists that are certified in nephrology (kidney disease) and those that complete a residency in that area. I know one well (hello Dr. Jeff B).
7/16: I met with a new NP (Friday). Had bloodwork done for next chemo cycle, general exam and f/u. NP called the interventional radiologist on the spot because I had not yet received an appointment for that paracentesis. It was scheduled for Monday, as I wanted to be sure I wouldn’t be attached to my mini-infuser like when I went for the transfusion. Turned out that the next day, they confirmed there was minimal fluid which was predicted by my local oncologist based on the imaging. Kudos to Dr. Onc. I spent several hours there and nothing was done but an ultrasound, but hey, that improved my prognosis considerably!
Another important lesson here though! When I was called by the hospital to schedule the paracentesis, the person on the other end of the phone (recall this is Friday afternoon for a Monday procedure) instructed me to stop aspirin and any NSAIDs. This is flawed in at least two ways. The intent is to reduce bleeding risk, which is very low to begin with, BUT, if it were truly a procedure risk (and there are several that meet this criteria) there are a few learning points. Aspirin irreversibly makes platelets dysfunctional for the life of the platelet – that is one week, so aspirin should be stopped one week before a procedure that comes with a high bleeding risk. NSAIDs cause reversible platelet dysfunction which translates to, when the NSAID (i.e. ibuprofen and others) is out of the blood, the platelets work again. What does this mean? It means that a blanket statement to stop NSAIDs is not a clinically sound policy, and may cause unneeded suffering to a patient with chronic pain. Different NSAIDs are out of the blood at different times. A drug is out of the blood at 5 half-lives. Ibuprofen (Advil) has a 2-hour half-life. Multiply 2 x 5 and that means I could take ibuprofen up to 10 hours prior to a procedure as long as my kidney and liver functions are normal. Compare this with naproxen (i.e. Aleve) which has a half-life of about 15 hours. Multiply 15 x 5 and that means you need to wait 75 hours, or just over three days until a procedure with high risk for bleed. And then there’s the COX-2 selective NSAIDs that have a lower risk of affecting platelets; they may be an option right up to a procedure depending on various other risk factors. For anyone interested in more detail, see an oldy but goodie more comprehensive article, written my myself and colleagues, Younan M, Atkinson TJ, Fudin J. A Practical Approach to Discontinuing NSAID Therapy Prior to a Procedure. Practical Pain Management. 2013 Nov/Dec; 13(10):45-51. PDF version here.
Last lesson: After receiving the packed red blood cells last week, my hemoglobin went from up from 7.8g/dL to 8.8 g/dL. Normal for males is 13.8 to 17.2 grams per deciliter (g/dL). So of course I’m worried about iron. It is noteworthy however, that cancer patients with Hgb’s between 8 and 10 do get used to it within 2-months generally, but I’m thinking, what the hell, let’s just normalize this. I did check in with my son-in-law who just happens to be a PharmD that prior to his specialization in pain therapeutics, graduated with specialized training in nephrology. Note, dialysis patients are chronically anemic and require frequent blood monitoring and IV iron replacement. Who does these calculations and dosing schedule in many settings? The pharmacist!
So here’s the thing. Relevant to anemia, I have had bloodwork for hemoglobin, hematocrit, red cells, ferritin, folic acid, and total iron binding capacity (TIBC). The latter three were on 6/22 only – almost a month ago, all of which clearly confirm iron deficiency anemia which is likely related to cancer and chemo. At that time, here were the values…
Ferritin was 48 NG/ML (normal 24 – 336): Whew, I’m within the normal range!
Iron concentration 15UG/DL (35-180) / TIBC 145UG/DL (normal 260-400) = 10.35%: Uht oh, pretty low!
After confirming with my PharmD nephrology source (JB), the transferrin saturation (TSAT) is considered low in dialysis patients if ferritin is below 150 and TSAT is below 25%. Earth to clinic > my ferritin is 1/3 that, or 48.
Let’s calculate the TSAT: That is serum iron divided by total iron binding capacity, or in my case, 10.35%. Oh noooo, my TSAT of 10.35% is less than half of 25%. Admittedly, I am not a dialysis patient and the risks and ability to reverse my acute situation are not the same as a chronic dialysis patient. My anemia should be more easily treated and probably less risky, but this is a good lesson and helps to put my anemia and the treatment in perspective. I’m looking forward to receiving IV iron in two days.
Conclusions: My final messages are fourfold.
- All of the clinic nurses and doctors have been wonderful, especially putting up with all my questions, but it still seems somewhat like assembly line medicine.
- A profit driven healthcare system serves many insurance providers and other intertwined entities financially, drives up healthcare and prescription costs, and the persons suffering most are the poorest US citizens and those that have marginal or no healthcare insurance while millionaires continue to line their pockets and dictate certain medical and prescriptive restrictions. I’m not sure how to fix this, but it is clearly broken.
- Never hesitate to ask your pharmacists questions – it’s readily available free medical advice from well-educated clinicians, almost all of whom are doctors of pharmacy (PharmDs) regardless of practice setting, including community settings. And even without a PharmD, they are pretty smart clinicians regardless of their practice setting.
- Pharmacists are grossly underutilized throughout the healthcare system, and their education is underappreciated and misinformed. They need to be included as “providers” and recognized as such by Medicare so that they can see patients, be paid for it, and help patients and other clinicians to provide the best medication and therapeutic interventions available. For more on this, see previous post, Nobody Knows.
As always, comments are welcomed with enthusiasm!