Surviving Oropharyngeal Cancer | It’s Going to Be Tough
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- Опубліковано 4 жов 2024
- David thought that a bump in the back of his mouth was an infected tooth. When he noticed the bump getting bigger, he went to a surgeon, who suspected it was a malignant tumor. A biopsy revealed it was cancerous, so he sought treatment from the Johns Hopkins Head and Neck Cancer Center. David underwent radiation and chemotherapy because the cancer had spread and has been cancer-free for over a year. While he is still unable to taste food, his quality of life has returned and his energy is back.
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#HeadAndNeckCancer #HPVHeadandNeckCancer #HPVThroatCancer. - Наука та технологія
Here’s my story. Resting my chin in my hand one day at the computer, I felt a little lump in the side of my neck. Like a tiny cherry tomato. No other symptoms of any kind. I was 53, and working as a personal trainer. Primary doctor sent me for a biopsy and it was HPV-16 squamous cell carcinoma. I was shocked and thought that’s it, this is how I’m going to die. I was incredibly lucky that I lived nearby to Cedars Sinai hospital in LA. First meeting with the oncologist he said there’s 80-90% chance for cure. Ok, that was helpful. First step was a tonsillectomy and resection at the base of the tongue. The cancer had started in my right tonsil and spread to the left lymph nodes in my neck. Stage IV. Tonsillectomy kept me in the hospital for four days. Brutally painful to even swallow saliva. A few weeks later I started chemo and radiation. I had some slight hearing loss already so they switched chemo drugs to Carboplatin and Taxol, to reduce the damage to my hearing. Then I had 35 sessions of radiation (5 x week x 7 weeks) and 7 weeks of chemo (drugs 1 x week, fluids 4 x week) Chemo was nothing. No nausea, no hair loss, just sitting there for 4 hours at a time. Rads were a different story. First three weeks were ok. Clamped down to a table for 20 minutes in a mesh mask getting zapped with invisible beams. Week 4-7 my neck was burnt to a crisp. Cracked skin, bleeding, and having to wrap my neck in Lidocaine and vasoline bandages. Like having a terrible sunburn and still lying in the sun every day. This is when the pain set in. Imagine canker sores covering the entire area of your throat. All taste was gone and swallowing impossible. Dropped 30lbs, massive doses of opioids, gargling with lidocaine, couldn’t eat at all. Putting in a G-tube took three surgeries to get it right. They kept suturing it too tight and my abs would just lock up in spasm. Then I had to feed myself liquid shakes by plunging them in through a big syringe. Kept me going, but I would frequently pass out from the opioids and be on the floor, with the shake splattered everywhere. I was on Oxycodone and Fentanyl patches, to the point where I was hearing voices and sometimes hallucinating. Still didn’t kill the pain. Had to keep track carefully of my intake so I didn’t forget and overdose. Those were dark times alone in my apartment. Most friends disappeared, to spare themselves from my demise I guess. One day I was out and the G-tube fell out of my stomach. I refused to get it put back, and forced myself to chug 12 bottles of Ensure/day to hold my weight. Eventually I was able to start eating bland, soft food again, and I got off the opioids. I did it too quickly however, and plunged into severe withdrawal. Nausea, night sweats, and suicidal depression. Had to go on an antidepressant for six months. My saliva function came back from zero to maybe 75%, I have very noticeable tinnitus, and swallowing is almost always a little challenging. I don’t dare eat anything without a beverage available or I can easily start to choke. My throat doesn’t seem to seal from the opening to the sinuses, so my nose runs whenever I eat and I frequently blow food out of my nose. I also can’t sniff when I’m chewing, or I’ll sniff food down my windpipe. I’ve scanned 4 1/2 years clear now, so I think I’m cured, but it was Hell to go through. I lost a complete year of my life. It sounds like I’m compromised, but it’s just the norm now, and I deal with it. I’m a changed person, but eternally grateful to the doctors and nurses and hey, life goes on. A lot of cancer patients don’t get to say that.
😢.
🙏 amen to u brother 🙏 sending lots of love Ur way . I'm so sorry you for everything you had to go through and endure. Very glad you are able to live thru all that and tell the story and are here with us all today .❤
What’s the cause of ur cancer
@@naturehub782 HPV virus. 80% of people have it, something like 5% develop cancers. For me, there was a price to giving oral sex to women. Ain’t that a kick in the nuts?
You’re a fucking warrior.
I am almost done with treatment for oropharyngeal carcinoma. I’ll be done in 4 days.
I’m two years post treatment and doing well, only thing is some foods don’t taste as good like chocolate.
Hi ! How long was treatment ? Any tips ? Dos or donts ? Advice ? Anything ?
@@zavalajacquelyn , my treatment was in Cardiff Wales where I had ciseplatin (chemo) and radiotherapy. Instead of 2 large does of chem I had 5 smaller does to try and reduce the chemo’s impact on my tinnitus, which I have to say worked well. No impact on my tinnitus. The radiotherapy was every weekday for 6 weeks. By the end of week three I was on strong pain meds (Ora morph and morphine sulfate tablets). Week 5 I asked for a nasogastric tube as swallowing was getting very hard. I needed this tube from mid October until late December. All food and medication went down through this tube. Following the tube removal I survived on meal replacement drinks until mid February.
My recommendations. If your oncologist recommends a peg tube, have it. I wish I had. Living with a tube hanging out your nose isn’t pleasant. Also ask for stronger pain meds as needed but be prepared to come off them slowly. I highly recommend basic morphine as I found it easy to come of it as apposed to modern synthetic opioid meds. Drop me a PM if you want to talk. It can be scary but in a few years time it will all feel like a dream.
@@SwanseaTitanFan thanks for the insight ! I’ll be sending you a message !(:
My father just started chemo and radiation a few weeks ago for throat cancer. He has lost so much weight and complains about dry mouth and the inability to taste anything. Any tips on what he can do to relieve this? Thanks.
@@mgoodwi1 as far as taste, it will come back but slowly. Advise him to try different things, for instance once I could swallow liquids again I was drinking thickened meal supplements and I found mocha my favourite so I had only them 4 times a day for several weeks. For dry mouth I had a spray (I can’t remember it’s name) but his oncologist can recommend something.
Iam one week now after I started chemotherapy
Praying for you
How are you doing now. Hope you're well
Good work.