New HPV-16 back of tongue cancer diagnosis and treatment to date

I wish you the best. You’re tough. I took cisplantin and etopiside in 2015 several rounds of it.small cell carcinoma in the back of my mouth along with Radiation. I’ve been clean for seven years. Hang in there.

I don't find part 2 posted under your name in discussions. I had 35 weeks of radiation and a targeted therapy Cetuximab back in 2012 after surgery for ear canal based SCC, not HPV related. It has not recurred there but I have had metastases. I know that HPV 16 tumors tend to respond well to radiation, and I have been reading some of the literature on the reduced dose. It sounds like it will produce equal results with less side effects. I hope you have had success with this protocol and are feeling strong in dealing with the side effects.

I took cisplantin in 2018 several rounds of it.small cell carcinoma in the back of my mouth along with Radiation. I’ve been clean for 6 years. Ended up having to get a stomach tube due to developing a throat 'thrush' infection just before leaving for a last weekend home before being a bit too debiliatetd to travel. Couldn't eat the whole weekend and could barely swallow. Had told the night doctor at the radiation facility I thought I had a throat infection but be took a look and brushed it off.
Lost 12 pounds over the weekend away and doctor pushed the feeding tube installation. Did better after that and antibiotics for the thrush. One thing I learned about feeding tube to help others.
Get the organic stuff - based on pea protein - you get atrocious gas from the pea protein, but it's better for you than the sugar based stuff - mix a half a cup of PLAIN kefir with a cup of warm water each 'meal' makes a HUGE difference.
Recovery - have to take a drug to help throast moisture. Was developing pancreas and gall bladder problems. Not enough digestive enzyme for food I was eating.
Started on commercial digestive enzyme (Digest Gold w/ATP) , probiotic, prebiotic, Things have gotten a LOT better. But still wonering why Mayo didnt prescribe them for me to begin with.

Just like you I had a diagnosis of HPV-16 SCC in The base of my tongue. As well, it had spread to a lymph node in my neck. This was in December if 2022. My doctor recommended a 6 week treatment of Cisplatin once a week to shrink the lymph node carcinoma (the tongue cancer was very small to begin with). After that I had a regimen of Carboplatin Chemo once a week with 5 radiation sessions a week for 6 weeks. Bottom line is that the side effects were not fun, particularly the radiation. Be prepared for swallowing difficulties. I ended up with a G-tube, but honestly it was the best thing I did. Don’t fear it if you have to go that route. The great news is in the end, is that I am in total remission with no traces of cancer. I have little, if any, residual effects from treatment. I pray it goes as well for you. Hang in there. Success rate is very high.

Hello I had rad/chemo for base of tongue HPV cancer.
I have an extremely dry throat. Can you tell me what drug you used for the day throat?
I would appreciate it.
Thanks

Thanks very much. Will do👍

Thank you. I will post my 6 week treatment experience now.

Sorry for your troubles with your throat. Dryness for me so far has been limited to my mouth. Typically comes ad goes intermittently during day.
When really dry I use ACT dry mouth moisturizing gum and I believe it’s the xylitol things that stick between your gums and teeth. That’s been enough to date. My best to you

Part 2.
I am going to now provide my experience receiving treatments in the DART 2.0 Trial Study that I described in Part 1. Obviously, we all have different, sometimes very different, experiences in treatment results based upon too many factors to name here. I pray that many, no all, of you can experience treatments the way that I have. Undoubtedly, it sucks to have to endure this, and it is not easy, but it can be endured.
Listening to our doctors and other specialists in the Mayo staff is a must. Doing all the exercises they recommend is a must. Eating the right foods, drinks, etc. and avoiding foods they recommend be avoided is a must.
Getting your mind and soul in the right place before, during and, I expect, after treatments is a must. Do all these things and you give yourself the greatest chance to kick cancer butt.
Note: drink a lot of water and fluids even before starting treatments is no joke. Continue drinking throughout treatments. Gets tougher and tougher to swallow, even liquids, and by Week 4 it was a one swallow at a time proposition. But I hope you will realize as I did that if you can do the first few swallows something makes the next bunch of swallows a bit easier, then the next few much easier than that; but always still one swallow at a time. There is a reason why we get 2 days of hydration each week when we receive the cisplatin; hydration is super important particularly when you add the impacts of the radiation.
Week 1
5 radiation treatments (each 2 gry)
1 cisplatin chemotherapy session (started at 40 whatever)
2 hydration sessions

My first week of treatments breezed by. My cisplatin treatment took between 4 and 5 hours. First through the IV: saline for an hour. Next, saline joined by a steroid (Dexa-something). Next an anti-nausea drug (long lasting); next anther anti-nausea drug (short term); then the cisplatin; followed by saline again. Done.
Note: protocol gave me 3 days of the Dexa steroid, one dose each day after chemo treatment (each Tuesday) each week. After week 2 it felt to me like being able to take the Dexa was a huge benefit in terms of pain/swallowing. I realized that beginning the day after my third day of Dexa (took Dexa Wednesday, Thursday and Friday) and until I received more Dexa in the IV during chemotherapy treatment, my pain in throat and swallowing steadily increased and then subsided as soon as I got the Dexa in my IV on Tuesday.
Thankfully no nausea and no side effects from chemotherapy.
Weeks 1 through 4, I was basically able to start each day with yogurt, carnation instant breakfast and during the days eat some more yogurt, applesauce, rice pudding, really chewed up chicken, turkey or fish (not much of any of it though, ie, not a full meal) shakes, ice cream. Everything I put in my mouth I chewed up to a creamy soft before attempting to swallow.

Week 2
5 radiation treatments
1 cisplatin chemotherapy treatment (40)
2 hydration sessions

Cisplatin chemotherapy session and radiation sessions once again uneventful. Actually, entire week pretty uneventful.
Started to feel some pain in throat toward end of week. Continued at least 4, often more, gargling sessions with salt/baking soda combo. Noticed some impact from pain on throat/swallowing but not enough to adversely effect eating or require pain relief.
Week 3
1 cisplatin chemotherapy session (30)
5 radiation treatments
2 hydration sessions

During Week 2 and into Week 3, I experienced several episodes of ringing in the ears, a few in left ear and a few in right ear. Told chemo doctor and he reduced dosage of cisplatin from the 40 whatever down to 30. Ringing in ear (tinnitus) is a potential side effect of cisplatin and could become chronic issue. Future cisplatin doses to be only 30.
Pain in throat/mouth much more apparent. Gargling a lot for temporary relief with the salt/baking soda combo. Works well. Doing all exercises, plus some extra ones.
Avoiding extra pain management as I don’t like taking drugs and figured I would benefit most, and feel the benefits of pain relief drugs, if I waited until I really needed them.
Third cisplatin chemo treatment was at reduced dosage (30), as explained above, and at the new dosage, uneventful.
The frequency of being poked for blood tests and poked for chemo treatments and hydration (2 times a week) started to wear upon my arms. In trial, I agreed to submitting to weekly blood draws and some other things apparently not present in the ordinary standard of care protocol. Hence, the arm poking fatigue.
Eat/drink warm fluids and cold stuff (shakes, ice cream, icees, anything; it will give some relief to pain in throat).
Losing ability to taste food and drink. Only could taste prune juice, mushrooms and French fries (tasted the potato).

Part 3
Week 4
Only 4 radiation treatments (off for Christmas)
1 cisplatin chemotherapy treatment (30); blood test showed low magnesium so magnesium added to IV during chemotherapy session
2 hydration sessions
NavDX blood test on Day 20 of treatments

I ask for sonogram to guide technicians/nurses into my veins for chemotherapy and hydrations sessions. Started asking after two successive events where it took 4 tries to get the needed insertion to do the job.
Asked for “Magic Mouthwash” (lidocaine, Benadryl, etc) prescription as the throat/tongue pain becoming more noticeable, but still manageable. To date, have never used this Magic Mouthwash.
Also, doctors detected some Thrush on tongue and mouth lining. Started Fluco-something to treat the Thrush. 2 weeks/one pill daily. Thrush eliminated after 14 days but still got some mucotosis? Did a lot of mouth washing with the salt/baking soda combo; no use of Magic Mouthwash. Please consider gargling a lot. I got a sore on the side of my tongue that has remained for a couple of weeks and it hurts. I can only imagine if I had multiple sores which I know some people have experienced. I am so sorry for them as the additional pain of the sores on top of throat/swallowing pain is very real, I am sure.
Initiated Extra Strength Tylenol use when warranted for pain.
Realized during this week that I was losing taste. Gradually became a loss of all taste altogether by end of Week 4.
I had the 4 week blood test using NavDX on the day of my 20th radiation treatment. Test examines a specific biomarker for the SCC HPV-16 type. Target was to see if the biomarker was eliminated from my blood. Took 6 days for results during which time I continued with another 5 radiation treatments and 1 more cisplatin chemotherapy session.

Week 5
4 radiation treatments (New Years Day off)
1 cisplatin radiation treatment (30); blood test showed low magnesium so magnesium added to IV during chemotherapy session
2 hydration sessions

Noticeable increase in pain in throat/swallowing; no avoiding it. Taste totally gone.
I love the radiation machine as I get in it and focus on the rays destroying my tumors. Staff plays Bruce Springsteen for me every session (I have seen him approximately 70 times). I close my eyes and listen to The Boss. Did not open eyes once during any session.
Even a well-chewed banana burns my throat at this point. Now it is tough to force the swallowing of any fluids and food, even when food is chewed up to a mush. Have to wash every mouthful down with a fluid, and that still hurts. This sucks but has to be done.
Note: I was trying to get down to 200 pounds before my diagnosis. And I had done so. But upon diagnosis and hearing about the likelihood of having difficulty eating during treatments, the docs gave me license to add some weight before starting treatments. I started treatments at 205. By radiation session #28, I was down to 184; a 21 pound loss or slightly over 10%. The staff and nurses had said during instructions about the treatments that they preferred to see only a 5% loss. This weight loss is manageable to me as I intend to use my low body mass index to build a stronger, more fit body when the side effects of radiation and chemotherapy are all gone.