Difficulty swallowing meds: Resorted to DIY pharmaceutical compounding

Posted by ltecato @ltecato, May 17, 2020

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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Hi Mojo,
Exactly... You get. Joe uses hot/warm mild coffee all day/night with his syringe. I hoped someone had found a device or something to clear the throat more to help, but it sounds like he is going to have to continue his routine like you do.
Thank you!
Charlee

REPLY

My chemo and radiation for nasopharyngeal cancer was 2013. 2022 I’ve got Osteoradioncrosis. After effect of radiation that occurred 8 years later. My biggest challenge is swallowing so I bough an electric pill crusher that helps so much. Turns into powder. It’s quite a challenge for sure. I’m doing swallow therapy 2-3 times a week now. They’re using electrical stimulation. It’s quite the battle. All my food must be puréed.
Hang in there. It’s tough.
Sue

REPLY
@suzannekay753

My chemo and radiation for nasopharyngeal cancer was 2013. 2022 I’ve got Osteoradioncrosis. After effect of radiation that occurred 8 years later. My biggest challenge is swallowing so I bough an electric pill crusher that helps so much. Turns into powder. It’s quite a challenge for sure. I’m doing swallow therapy 2-3 times a week now. They’re using electrical stimulation. It’s quite the battle. All my food must be puréed.
Hang in there. It’s tough.
Sue

Jump to this post

Please check with your pharmacist about crushing all of your medications and mixing with water. Some common meds cannot be crushed and mixed however there are usually alternative meds which can.

REPLY
@davej

I'm a 62 year guy that could not take pills. My parents knew I'd never be an abuser of pills something mentally. But when I got to my 50s pills were more common than I like so I had to figure out way to take them, so here is an experiment to try. Take 1 small pill put in you mouth take a sip of liquid tilt your head back and swallow. Liquid is gone so is pill. More practice makes it easier. I drive a school bus and some of my kids have said they cant swallow pills and I tell them what I just wrote and they all seem to be able to take pills with no problems now, good luck, I hope this helps.

Jump to this post

@davej I have a problem swallowing food and medications, but I cannot swallow even the smallest pill down my throat the way you suggest. I have to do exactly the OPPOSITE of what you recommend and strangely enough, THAT is what works for me!

I put my pill/capsule/gelcap in my mouth, take a sip or mouthful of water (depending on size of pill/capsule/gelcap), put my HEAD DOWN and swallow! Even the largest pill/capsule/gelcap goes down my throat smoothly.

In fact, this is the method an oncology nurse taught a friend of mine who was suffering from cancer, and I learned this from her.

Give this a try. I use this method to swallow food sometimes too.

REPLY

I'm grateful that more and more meds, vitamins, etc. now are made chewable. I have lots of swallow problems since my Stage 4 esophageal cancer surgery and when buying over the counter vitamins, etc. I always look at the size and shape of the pills (sometimes I can't do this as label covers almost the whole bottle). Sometimes even shaking the bottle gives you an idea of whether they are large pills or not. Some meds show the size of the pill on the bottle. It takes longer to make your purchase of over the counter meds/vitamins, but so worth it to get a size pill you can deal with. I've found crushed pills don't always go down well for me.

REPLY
@hrhwilliam

Please check with your pharmacist about crushing all of your medications and mixing with water. Some common meds cannot be crushed and mixed however there are usually alternative meds which can.

Jump to this post

Thank you very much.

REPLY

Can you ask for liquid version of antibiotic? (Pediatric )

REPLY
Please sign in or register to post a reply.