I’m SO glad I came across this site! I was first diagnosed on April 1, 2016 and have had 2 reoccurrences leading up to today (Oct 22, 2018). I had surgery to remove about one half of my tongue, radiation, chemotherapy, immunotherapy and brachytherapy. My MO tells me the immunotherapy is not working but I’ve asked her to please continue it alongside the chemotherapy. I chose to have brachytherapy at another hospital since my current facility did not offer it. My brachytherapy doctors feel they have gotten all the cancer but my current facility doctors will not agree and, without doing another PET Scan, say the cancer is still there. Regardless, I have had the GI feeding tube since the brachytherapy was performed this past Feb. I don’t think it’s so much of not having the ability to swallow as it is not being able to have my tongue manuever anything put in my mouth to the back of my throat where I can swallow it. If anyone has used the “shaker” exercises do you think they will work for me?

Any help is appreciated,

Susan

Welcome to OCF, Susan! Im sorry to hear what you've already been thru! Im very glad you're here, Im sure we can help you with info and support!!! There arent many of us 3 timers around.

The best thing you can do to improve your swallowing is to work with a SLP. Ive seen many friends have substantial improvements in their ability to eat, swallow and in their enunciation with a professionals help. First you will need to get tested to make sure you are able to swallow safely. Once your current assessment has been done the professional will know if you can improve upon your current level or if you risk aspiration pneumonia by trying. Unfortunately, quite a few OC patients are not able to swallow anything after going thru OC treatments and recovery. The swallowing muscles can quickly forget how to function together when they are not used on a daily basis. This is why we always advise everyone who is doing rads to keep swallowing every single day, even if its just tiny sips of water. Those tiny sips can make a huge difference in if a patient will ever be able to eat and drink close to normally once they have made a complete recovery. Radiation (brachy too) can do so much damage to the areas around where the tumor is that a patients ability to regain their swallowing function is pretty much on a case by case basis. Ive had friends who could barely eat anything besides yogurt, applesauce and pudding but after months of working with a SLP and doing everything they were told including swallowing exercises they've made significant progress. They might not ever be able to eat anything they want but they've improved enough to eat many more things than when they first started.

Your current medical team should be able to tell you what other things are available to help you at that facility like a PT or SLP or even a counselor to talk to. Many of us benefit from being able to talk to someone about what we are going thru. Many also take anxiety meds, caregivers do too. Patients who have partial glossectomies should begin PT as soon as possible to help them learn how to manuever their new tongue. If you havent talked to a PT, SLP or speech therapist you may want to check into this after you get your current situation taken care of.

If you are not content with your current doctors, you may benefit from going for a second or even third opinion before more treatments. Id also advise if at all possible for you to seek out a comprehensive cancer center (CCC) as they are the most familiar with complex cases such as yours with having recurrences. Time is of the essence if there's still cancer left as recurrences can move very quickly.

Best wishes with everything!!!

NCI list of CCCs

US News Best Hospitals List

Christine,

Thank you for your quick response. I greatly appreciate it.

I'm not sure what SLP stands for. I have been swallowing every day - the large amount of mucus that I have I need to swallow it continually (does that count?). Prior to having the brachytherapy (Feb 2018) and after having surgery (Apr 2016), radiation and chemotherapy (July 2016) and immunotherapy (2017) I was able to swallow food. I had more of a problem with manipulating the food in my mouth due to the constraints of my tongue. I was hoping to find out what others have done to "re-train" their tongue (or what's left of it) to maneuver/manipulate food in their mouth and what has worked for them.

Also, I'm curious as to your signature (after).....can you tell me what "HBO dives", "trismus" and "mandiblctmy" means?

Susan

An SLP is a speech and language pathologist. They have expertise in swallowing. Any kind of swallowing counts, even dry swallowing.

Susan,

I had all of them. Here is an explanation without too much medical jargon

HBO dives is the time spent each time in a hyperbaric oxygen chamber, sometimes called HBOT, Hyperbaric Oxygen Treatment. Each separate time is called a dive because it equals a certain diving water depth. It’s usually in a few places, and had one close to where I lived.

Trismus is difficulty, measurement, opening your mouth. There are different gauges, and have had it severe enough not even to fit a spoon. There are different gauges to measure the severity, usually done by an SLP, who is mentioned above.

Madiblelectomy is the surgical procedure to remove your jaw bone. There is another, close spelling, that does not cut as deep to remove the facial nerve.

I hace been to a number of SLP’s through the years. I think a consultation would be beneficial, and yes, I have done the “shaker” exercise, but what’s more appropriate for you may be different than mine.

A concern is the cancer that recurred or wasn’t fully removed. I would look into that ASAP. Btw, often with brachytherapy, which I had similar, and a newer form, they sometimes do as part of surgery, and at times, as adjunct to chemoradiation. There is a newer form of radiation called Proton Therapy, which is ay about 25 locations in the U.S. i believe it got all my cancer five years ago, so far. I go for my 5 year Scan this month or next although I’m 10 years out from my original diagnosis, so there is always hope!

Good luck with everything

Gloria - thank you for clarifying the swallowing for me and for telling me the meaning of SLP....I greatly appreciate it!

Susan

Paul,

Thank you for all of this information! I will look through my medical file (via my patient portal) and "build" my signature from there.

I believe I had the proton beam therapy along with chemotherapy after my first surgery in April 2016 and I'm not sure why the cancer came back. I've been fighting it ever since...and I'll continue to fight for as long as I can.

Hopefully you'll see my revised signature with my next post!

Susan

The signature instructions are laid out in the link from the PM I sent. Theres also many tips on the forum and a list of medical terms and abbreviations we commonly use around here. Once a PM has been read, the tiny flashing envelope disappears. Click on the tiny down arrow next to the My Stuff tab and on the drop down menu click on Private Messages.

I had written a long reply but hit the wrong button and POOF! the whole post along with several links disappeared. Sorry I havent yet had enough time to find all the links and rewrite another reply.


PS... Thanks Gloria and Paul for your help

Paul,

I’m sorry I failed to wish you good luck with your 5 year scan!

Please let me know the great results I’m sure you’ll have...

Susan

Thank you Susan! I hope to get to see my ENT soon, but i’m currently in the hospital with non cancer stuff! First was burning my foot with boiling water due to dropping a pot due to neuropathy in the hands, even legs, and a few days after getting back home after two weeks, i fainted due to orthostatic hypotension, injuring my other foot, which I truly believe is a result or progression of multiple treatments, and blame the neuropathy on the chemo and treatments too!

Anyway, life goes on, and sort of good it’s not cancer!

My goodness, Paul! You sue have had a run of bad luck. You’re right to blame the neuropathy and hypotension on the cancer treatments. John, despite not having as many different treatments as you, had both hypotension and neuropathy, as well as hearing loss. Head and neck cancer is brutal.

I hope you’ll feel better soon.