Difficulty swallowing meds: Resorted to DIY pharmaceutical compounding

I was irradiated for cancer of the nasopharynx in the mid-1970s. Over the years it has gotten increasingly difficult for me to swallow food and pills because of the long-term damage from the radiation on my throat and mouth tissues. Food and pills get stuck in my throat and I have to cough them up to get them loose and then try to swallow again. A lot of food ends up coming out my nose, sometimes. Ick. The dysphagia is aggravated by the fact that I also have a condition called trismus, which means that the radiation made it impossible for me to open my mouth more than a couple centimeters at the widest. Also my teeth are in horrible shape due to xerostoma and no dental work can be done to fix that because of the radiation damage and the risk of osteoradionecrosis as well as dentists or oral surgeons can’t get access to my mouth because I can’t open it very wide.

Anyway, I’ve had to take a bunch of big antibiotic pills recently and the only way I can swallow them is to grind them up and put the powder in something like pudding or yogurt and gulp it down as fast as possible so the taste doesn’t stay in my mouth.

I know some pharmacies will do “compounding” where they take pills or powders and mix them into flavored liquids for patients who can’t swallow pills, tablets or capsules, but I am hard of hearing to the point that most people would consider me deaf (not Deaf as I don’t use ASL) and I hate dealing with pharmacy bureaucracies and insurance company drones, so I looked into doing my own compounding.

Right now I’m about halfway through a 10-day course of Keflex, twice a day. It comes in gelatin capsules and is already finely powdered, so it does not need grinding. I’m getting a mortar and pestle for the pills that do need to be ground up. I’ve been using a twist-action pill crusher but sometimes pill crushers leave too many chunks of intact pill mixed with the powder. These taste awful and they can get stuck in my throat.

A company called HUMCO makes a “suspension vehicle” called Flavor Plus, which is like a thick, bland-tasting syrup that holds solids (powders) that won’t dissolve in water. So I got a bottle of Flavor Plus as well as another HUMCO product called Flavor Sweet, which adds a fruity taste to the mixture of Flavor Plus and the medicine.

To prepare a dose, I empty a Keflex capsule into a medium-size plastic Solo cup (about 4 inches tall). Then I get a 30 cc dosage cup from a bottle of OTC cough syrup and fill it with a 50/50 mix of the suspension vehicle and the flavor syrup. I pour the 30 cc of goopy liquid into the Solo cup with the powder from the Keflex capsule and then I mix it all up.

You may not be able to get a good mix just stirring with a spoon or fork. I use a cheap, battery powered “milk frother” that I bought recently for other kitchen purposes, but it does a great job of uniformly distributing all the powder in the liquid. It turns it into a pink foam that is easy for me to swallow and the taste is tolerable.

I’m not posting this as an endorsement of the products I’m using, and I’m not urging anyone to duplicate my procedures. I am a complete beginner when it comes to converting solid pills into liquid syrups, so I expect I will be learning a lot of lessons as I make rookie mistakes in the future. I am hoping to raise general awareness of the problem of dysphagia in patients who were radiated for head or neck cancers and other long-term side effects of radiation in cancer survivors. I was irradiated 45 years ago, and for most of that time the side effects were easy enough to manage, but over the past few years they have really caught up with me. I know I’m not the only surviving cancer patient from the ’70s who is dealing with these issues in 2020, but also there are probably not very many of us so we are not very visible to the medical industry behemoth.