De-intensification Clinical Trial

SmittyNo1

Hello everyone! Thank you all for posting your journey lessons, insights, experiences, etc. I feel like I've read them all since I joined you as a cancer patient. I begin treatment after surgery in a couple of days as part of a clinical study. Your posts have been so meaningful to us that I hope that by doing the same I will somehow help others in the same way.

Tomorrow I go to have a port installed for the chemo treatments. After my TORS surgery experience and the subsequent 4 days in intensive care I didn't want the weekly poking they would have to do otherwise.

Then, on 8/31/23, my first day of treatments. Nervous but anxious to get it over with. Surprisingly, the making the mask and the simulation did not bother me at all. I'm very claustrophobic, so the doc prescribed Ativan for me. I guess it worked.

I will try to post each day. Please reply with any advice, thoughts, contemplations, etc. I thought others might be interested since I'm in this clinical study. De-intensifying HPV+ cancers seems hopeful for minimizing side effects while still being effective. We'll see what my experience is.

Peace, Smitty

wdidg

Smitty, Thanks for posting this. What is the de-intensified trial? Less rad and less chemo? If so, what are the doses? If don’t mind, can you provide more details like where was your primary, tumor size, any lymph node involvement, margins from TORS etc? Hope the deintensification works for you. God bless.

wbcgaruss

Well, Smitty, welcome to the CSN H&N discussion board, glad to have you but like all of us we, you didn't really want to be here. But for H&N cancer patients it is a good place to share and help and find support.

Could you give us some details on the clinical study, and name of the drug or is it a chemo rad plan? Is it immunotherapy? Maybe you can tell us where you are being treated and possibly the name of the clinical trial and a page link if it has one.

Could you give us some details of your cancer, the type, where it is located, staging of it, (size), etc?

As far as getting a port you will be glad you did they are a real vein saver. I had one back during treatment in 2012/13 as per recommended by my care team, so thankful I had it.

Are you getting a feeding tube? I know people don't like these but like the port, they are a real help and a blessing and both are temporary anyway to get you through the toughest time of your life.

Glad you got through the mask, they are not too bad to tolerate, it's all in the head, Hah. How many radiation treatments are you getting?

Have you checked out the Superthread at the top of the page, it's loaded with information.

I always found that prayer, lots of prayer support and strengthen us to get through this.

I do not know how difficult your treatment will be but when we have more info and your treatment moves along we can be more specific.

I don't know what your care team is telling you but during my first cancer they were telling me ahead this would be hard, this will be tough, it is difficult treatment but we will get you through it, prepare yourself for a tough time, for the worst so you are ready. I did. But once in the thick of treatment, I now knew what they were saying and they were right but it was tougher than I thought.

Wishing You the Best

Take care, God Bless

Russ

SmittyNo1

Hello All. The Reader's Digest condensed version of me is...

- misdiagnosed tonsil cancer (HPV+) for over a year. Finally asked for a 2nd opinion (thank God).

- had TORS surgery 6/23/23 to remove both tonsils (only left one was cancerous). Radical tonsillectomy of left one included some swallowing muscle. Also had a selective neck dissection on the left side. 4 of 21 lymph nodes removed were cancerous.

- staging is pT1, pN1

- enrolled in clinical de-intensification study. Will begin 6 fraction/week, 2 Gy/fraction accelerated RT for 4 weeks (5 days/week) and 1 day (25 doses total; 50 Gy total) and 5 weekly cisplatin doses (40 mg) on 8/31/23.

God bless you, Smitty

wbcgaruss

Thanks, Smitty for the rundown of your situation.

I am praying that this course of treatment chosen by your care team works for you well and eradicates any remaining cancer cells.

I found an article on the deintensification concept and it is used to greatly improve quality of life following treatment.

The head and neck cancer team at Mayo Clinic Comprehensive Cancer Center aims to create de-intensified treatment options for select patients with HPV-associated head and neck cancer. Streamlined methods of treating patients and following their care plans after treatment have allowed the team to focus on long-term quality of life and functional outcomes.

https://www.mayoclinic.org/medical-professionals/cancer/news/de-escalated-therapy-improves-quality-of-life-following-oropharynx-cancer-treatment/mac-20538563

I forgot to mention our motto here is NEGU (Never Ever Give Up)

Take care, God Bless-Russ

SmittyNo1

Some additional details...

TORS could not get a clean margin on the tonsil tumor (too deep/risky). According to the doc, microscopic edge remained - hence the need for chemo. Otherwise, I'd be 3 week RT in the study... darn. There was no ENE on the lymph nodes.

The study is being conducted by the University of Pittsburgh Hillman Cancer Center - Study 22040025. Also on ClinicalTrials.gov - ID NCT05388773. I live in central PA, near Penn State Hershey Medical Center. They are the ones who misdiagnosed.

Dr. James Malone of Associated Otolaryngologists of Pennsylvania and his team did the surgery. We can't say enough about him and his team. Absolutely awesome people. They also do the swallowing therapy.

There are 2 differences from standard treatment. First, total rad dose is 50 Gy as opposed to 66 Gy or more. Also, it is an accelerated schedule, getting 5 weeks of treatments in in 4 weeks and 1 day, 25 treatments total. Chemo at 40mg/week is standard low dose treatment.

I had a feeding tube put in at the same time as my TORS and dissection. Glad I did, since the tonsil removal took some swallowing muscle and I have some issues eating. Working with a speech therapist but on hold a bit now until I get this zapping and poisoning over.

Peace, Smitty

wbcgaruss

Smitty, thanks for all the extra info.

I am surprised you were misdiagnosed at Hershey Hospital they are supposed to be a good hospital.

I had my lymph surgery there in Sept. 2019.

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

So, had the Medi-port installed this morning, simple pimple. So I'm all set for Thursday's 1st chemo dose and rads. Interestingly, my chemo oncologist called me with concerns over a hearing test I had just prior to the tonsil biopsy. It showed moderate hearing loss, so it sounds like she's going to switch me to carboplatin instead of cisplatin. She said it does not have the hearing toxicity. I'd be very interested to hear from anyone who has had this chemotherapy drug instead of cisplatin.

Penn State Hershey is a great facility with great people, and they remain our family doctors of choice. The way the doctor that we were referred to for the 2nd opinion (who correctly diagnosed and completed the TORS surgery, Dr. Malone with AOP) explained it is that in the early stages it is very difficult to identify, and that even on the CT scans the tumor initially was very hard to see. It was only with the benefit of what I had already been through that he was initially convinced that something more nefarious was going on. I guess what I would say is - get 2nd, 3rd opinions. Medicine and the human body is so very complex. Be your own best advocate!

Peace All, Smitty

wbcgaruss

Smitty, thanks for the update.

I had Cisplatin, Taxotere, and 5FU in 2012/13 and I have neuropathy and mild tinnitus from the treatment. Whatever you can get the least side effects from do it. Frankly, your chemo oncologist calling you with concerns over a hearing test shows me that your care team is on top of things and are into details, that is good for you.

Thanks for explaining the Penn State Hershey thing, I understand the situation now and as you say be your own best advocate, get extra opinions, and I always say go by your gut feeling a lot. If you are not comfortable with something ask questions do what you need to till you understand and feel comfortable with your situation or procedure.

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

OK - Day 1 in the microwave oven! I thought about music, the technicians asked if they should play something, but it's so quick and the Ativan had me about half buzzed out into la-la land that I said no and simply contemplated the meaning of life, the universe, and everything while getting microwaved.

Also got the first dose of poison. We found out that carboplatin is a much quicker infusion than cisplatin, 1hr vs. 6hrs + another 1hr the next day. So we we not too unhappy about that. We'll make a pharmacy run for all the other meds they ordered for nausea, diarrhea, constipation, pain, etc. But for now, there is no seismic activity going on inside of me and I feel ok.

Peace, Smitty

SmittyNo1

Today was first day in the microwave oven! I thought about music, the technicians asked if they should play something, but it's so quick and the Ativan had me about half buzzed out into la-la land that I said no and simply contemplated the meaning of life, the universe, and everything while getting microwaved.

Also got the first dose of poison. We found out that carboplatin is a much quicker infusion than cisplatin, 1hr vs. 6hrs + another 1hr the next day. So we we not too unhappy about that. We'll make a pharmacy run for all the other meds they ordered for nausea, diarrhea, constipation, pain, etc. But for now, there is no seismic activity going on inside of me and I feel ok.

Peace, Smitty

wbcgaruss

Hello, Smitty, so glad your first day of radiation went so well and was so peaceful.

As far as chemo, that is quite a time difference between carboplatin and cisplatin. I did not know there were different infusion times between the chemo drugs. That's why for me when I had radiation in the morning and then chemo it seemed to take most of the day as I had the cisplatin.

Overall a good treatment start. And yes get stocked up on recommended meds so you are prepared for anything.

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

Happy Labor Day Weekend everybody! So, yesterday was a double radiation day, since I'm getting zapped 6x during the week. Now a break for the holiday, so nothing until Tuesday. I find it a little funny how it's seems that the docs never want anyone to skip a treatment for any reason, but if it's a holiday it's ok.

Anyway, feeling just a touch nauseous and my saliva is thickening up a bit, but so far, so good. The worst part was last night I had pain at my left ear. If I understand the doctor right, that is where the tonsil tumor had grown (that direction) and is where the deep margin is. I wonder if they are zapping there, hence the pain. The left side of my head is screwed up anyway from the surgeries (TORS and neck dissection). I get terrible 1st bite syndrome pain, or it happens if I yawn or sometimes when I cough. Gabapentin doesn't touch it, or anything else for that matter. I did some research and it looks like Botox might be hopeful if it doesn't resolve itself. I'm a long way from worrying about that just yet, but it definitely reminds me it's there. Interestingly, I tried a roll-on freeze product that did the trick. I had to be very careful of my eyes, but it actually calmed things down enough for me to fall asleep.

So I didn't sleep as good as usual last night, but am feeling better this morning.

Peace, Smitty

wbcgaruss

Thanks for the well wishes and a happy labor day to you also Smitty.

Enjoy the holiday break away from treatment you will be at it soon enough. A little nausea and saliva thickening, the treatment is affecting you a bit already. I think you are probably right on about the cause of the ear pain. I hope you can get some good sleep and rest you need it, especially during treatment. So take care and I am glad for you that you are generally doing well and getting through your treatments except for some minor pain and nausea which you are handling well so far.

Wishing You The Best

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

Thank you Russ. Your words are comforting.

So, another day, another rad treatment. 17 treatment days to go. Feeling a little less wonky today but I'm sure the new weekly round of chemo will fix that on Thursday. Rads have made my spit thicken up, but the salt water / baking soda mixed drink 6 times a day is helping that.

Suffering a little constipation I think, which scares me after my ER visit when I was home after the surgery. Then I had a baseball sized blockage manually removed (this whole episode was unbelievably painful... avoid this scenario at all costs!). So I'm getting proactive with the "keep things moving" meds and should be ok until I see the docs.

I have no appetite. I had been ok swallowing yogurt, pudding, other pureed foods, but the chemo gut makes the thought of eating = blah. I keep drinking water though, and also keep doing my exercises.

Till tomorrow folks, Peace Smitty

wbcgaruss

You are welcome Smitty, this treatment is difficult, to say the least, any kind words of help and support are a help and mean a lot, I know that for sure.

Glad you are feeling a bit better today and I hope you generally hold steady during this from day to day but keep in mind it can be an up and down thing, good days, bad days, and hopefully a lot more of the good than bad days. And yes stick with the salt water/baking soda mix for the thick saliva and you may want to consider sleeping and spending time in a recliner or if you don't have one stay propped up in bed with pillows. Because laying down tends to send the thick saliva to the throat and can make you gag and feel like you are choking till you get it coughed up and spit out. I was sleeping in a recliner and still had it gather in my throat area when I was sleeping and felt like it cut my air off and I had a time getting it hacked up and out. While you are awake you can stay ahead of it by spitting and rinsing.

Very good on the constipation, keep ahead of it. Baseball-sized obstruction, manually removed, not a very nice sounding scenario to deal with, sounds like a regular pain in the you know what. This treatment can be challenging, I dealt with constipation and diarrhea, as I said earlier this treatment has its ups and downs.

No appetite, not eating, it seems you are at the spot we all face, nausea, or no appetite, no taste. Don't lose too much weight, you may have to force a certain amount of calories through to just maintain a minimum needed intake of daily calories. Check with your care team on the calories required, I know it is always said your body uses a lot to heal and sustain itself through this treatment.

Wishing You The Best

Take Care, May God Bless & Watch Over You

Russ

SmittyNo1

Ok, so here's where we are...

1. Got 2nd chemo yesterday. Tolerating it very well. Blood work was spot on.

2. Getting microwaved according to schedule. Only noticeable symptom is thick saliva. 8 of 25 fractions done.

Taking everything on the shelf to deal with the constipation. This might cause a ripple in the time-space continuum whenever it lets go... just in case you see your clocks running backward in a little while.

I don't have a appetite, things are tasting a little wonky, but all in all so far, so good. Fatigue is noticeable so I drift of with my honey for a nap every now and then.

The next 2 weeks are full weeks (no breaks).

Peace All, Smitty

wbcgaruss

So, Smitty, thanks for the update.

I see you are tolerating the chemo well. A bit of thickening saliva. Tough time with constipation, hope you get a working solution soon. I always drank prune juice as warm/hot as I could stand it. I think it works in your system better warmed up. Appetite is affected, taste is getting affected, somewhat fatigued. I think you checked all the boxes and still have your sense of humor and that is a plus. I will be watching my clock for a backwind situation.

Wishing You The Best

Take Care, May God Bless & Watch Over You

NEGU (Never Ever Give Up)

LeeB3

Hello Smitty,

I just completed 60 gray and 7 chemotherapy of carb. Be careful of yeast infection. Baking soda and water water will help relieve pain. But nothing beats a script from the doctor to remove the infection.

My infection was so bad I could not put water unless it had a little salt in it. After meds 80% of my pain went away.

I.C.,

Lee

SmittyNo1

UGH. Zap 9 of 25 this morning. Mask was so tight, I had them take it off twice before it was tolerable. Daughter is giving me a strategic haircut this afternoon.

Weekend was miserable. Just felt awful, I think it's the chemo. No nausea really, just malaise. Spit is miserable, as is taste. The salt/baking soda rinse and water is the only thing I can tolerate now. Sure am glad I have the feeding tube.

Getting fluoride trays today. We'll see how those go.

Peace All - to those who went before and inspire us - God Bless You.

Smitty

wbcgaruss

Hi, Smitty, sorry you had mask tightness issues but at least them removing it and replacing it solved the problem. The haircut will most likely solve the issue. I don't know how much or how thick your hair is but don't take too much off that it would make your mask loose.

Sorry, you are starting to really feel the effects of treatment over the weekend. Sounds like you were just generally feeling crappy with thickening saliva and poor taste. I also am glad you have the feeding tube as I am a big proponent of them especially if folks doctor recommends it. Many try to avoid them and some are successful and do well and some suffer greatly trying to keep the necessary calorie intake up.

I never had the fluoride trays nor were they recommended. Not many on here had them so they don't seem to be a standard of treatment. Every now and then someone shows up and the trays are a part of their treatment. It certainly can't hurt and dental care and issues are a big part of this treatment now and in the years going forward.

Wishing you a good day.

Take care, God Bless

Russ