Pills, Pills and More Pills: A Follow-up

Seems as if my last post on too many pills struck a nerve.

According to some of the feedback that I received, I am way out of my league with my complaints about my pill count. Some of us patients top 85 pills a day.

Here is an important email that I received from one of the readers of my blog who makes some good points that I thought I should share.

A few years ago I had to take about double the number of pills I take now.  I simply adopted the view that for every new medication I was asked to take, I asked the doctor to find two that I really didn't need.  The strategy seems to be working.

I developed this strategy after contemplating something my mother went through years ago.  She was taken to the emergency ward of a local hospital.  She was very sick from a number of things and death was imminent. Her organs started to fail.  It was decided that they would keep her pain under control but stop all other medications and allow life and death to take their course.

Once they stopped ALL of her vast amounts of medications (once on a med she never got off it) and she immediately began to recover.  In fact, she lived for 12 more years after that incident.

Of course you are a doctor, but for the rest of us I would suggest that twice a year (or more often if required) each of us present a full list of our meds to each doctor that treats us, with a view to stopping all meds that are no longer needed for one reason or another.  Doctors seldom have a list of the meds they have prescribed to us over the years and some doctors don't bother, of their own initiative, to even review those meds, let alone reviewing all of the meds we are taking in order to take out meds that are no longer necessary.

These are important lessons here. 

With today's larger integrated healthcare delivery systems for outpatient and inpatient services and the possibility of a shared electronic medical records, it should be easier to keep the medication records up to date, but as a dear friend can testify when his wife recently came home from hospital on two nearly identical meds (the second one was completely unneeded and a potential problem), it is still too often the case that care is not co-ordinated and patients are taking drugs  that at best they don't need, and at worst, can be dangerous.

That is why is important to be our own well informed advocates.

Pills, Pills and More Pills: A Serious and Sometimes Humorous Look at Adherence

I have blogged extensively on the serious problem with adherence with oral cancer medications in past posts. Check out my interviews from ASH 2013 if you haven't seen them before.

Pills don't work if we don't take them.

Many factors play into how faithful we are about following our doctors' and pharmacists' orders.

Let me get personal.

I need to take way too many medications. And with way too many twists and turns in how they are taken.

It is so bad that when I travel, I carry a note from my doctor so I don't get stopped by security for all the pills and potions, many of which are unlabeled including the precious unmarked grey capsules that form my trial supply of ibrutinib.

How many pills do I take?

I take so many pills that I could skip breakfast and still have a full stomach.

How many pills do I take?

I take so many that the pharmacy asks me if want help carrying my prescriptions to the car.

How many pills do I take?

I take so many pills that I could reproduce a decent pointillist copy of Seurat's A Sunday Afternoon on the Island of LA Grande Jatte with a week's worth of the medicine in my bathroom.

OK, I am exaggerating, but you get the idea.

My carry on is mostly drugs, both my regular daily doses and my "just in case" meds.

Let's start with the "emergency" meds first.

I always travel with Levaquin for respiratory infections, Cipro for all other bacterial infections, and Tamiflu for influenza. These are like my talismans used to ward away the very infections they are designed to prevent. I cling to the magical thinking that if I bring them, they won't be needed, and if I don't, then watch out.

The magic has worked so far. My same old box of Tamiflu has been irradiated by airport security around the world 100s of times by now.

I may bring ginger and meclizine for nausea and also Imodium and Culturelle (a probiotic) for diarrhea when I travel to exotic lands, topical voltaren, arthritis-acetaminophen, Celebrex, and a few very old stronger pain pills just in case. Over the counter Pepogest (peppermint oil) is my go to for most GI issues.

I don't bring anything for sleep or anxiety. I am lucky that way.

I do bring herbal teas with mullein, slippery elm, and marshmallow root in case I get a sore throat or hoarse voice when I am scheduled to speak.

I pack several cold and allergy remedies too for my longer trips out of the country. Otherwise I can just buy them as needed.

I bring a whole different list of meds for my wife when she travels with me.

My regular daily meds overflow their AM and PM plastic pouches. And when I travel more that 10 days, I need large two pill cases. And I always take at least three extra days of everything.

Getting my meds ready for travel is a more time consuming, exacting and high stakes chore than packing my clothes or my paperwork.

At home or on the road, the daily routine is killer too. I am thankful that I don't take any mid day meds, but in the morning I have ibrutinib 1/2 hour before eating or taking all my other meds. Those include one that I must remember to take only three times a week and one sublingual that I wait to dissolve under my tongue just once a week, and finally one where my dose is variable depending on my activities that day. One must be taken daily after  the same meal daily. One is pill is cut in half and another one in quarters. This all takes a ton of time.

The cyclosporin that is a twice daily medication comes in a bulky thick foil individual wrapper that defies my feeble fingernails in their bumbling attempts to open the packaging, so I often need to cut out each individual capsule. But scissors are a no no in carry-on, so I always bring extra cyclosporin when I am on the road (or in the air)  in case I can't open some of the packets. And what's worse is that me being a vegan and having to gulp down so many capsules made with gelatin, an animal protein obtained by boiling skin, tendons, ligaments, and/or bones with water. 

I don't want to even think about it.

Another complication is that a couple of my regular supplements must live in the fridge. They get forgotten the most. (Left out in the cold)

Another is a tart and fizzy powder that is mixed with first hot water and then cold water, twice a day.

I haven't mentioned all the topical creams my dermatologist wants me to use and the ophthalmic ointment needed nightly to prevent painful corneal abrasions that I self apply with a mirror and a flashlight and that effectively blinds me throughout the whole night.

Until the parade of pills starts all over the next day.

We can understand why oncologist like infusions. They can be sure that the precious medication is delivered.

Still, I am grateful that these oral and self administered medications exist, that I have the insurance and resources to afford them, and the freedom and health to complain about the whole twice daily rigamarole.