After TORS, de-intensified trial of 3 weeks rad
Hi all. Massive thanks to you who have shared your experience and helpful tips about getting through your ordeals. You have shown me what patience and strength is.
I'm here for support, but also want to be a resource for anyone going through something similar, as I seem to be a kinda niche patient with this early-stage ssc that qualifies for ("just") the three-week trial of radiation. I feel so fortunate to be in this place, and with a care team that I wholly trust. Yesterday I completed my first week.
So far I can report that each day has gotten a little harder, with virtually no side effects the first two days besides a little lingering fatigue. Then the fatigue increased, along with nausea, and on Thursday and Friday I could hardly eat, though I had an appetite. But I wasn't puking! So I just forced food down, with my wife's advice that got her through two horrendous pregnancies.
My throat and mouth are still a bit sore from surgery, but no big deal. Both are feeling the irritation from the radiation, inside and out, but nothing bad. Now, I have the weekend to "recover", and two more weeks of radiation to go.
Of course, I'm expecting it all to get worse, but I feel like I'll have it easy compared to you who have 6-8 weeks of radiation AND chemo. I send all my extra strength to you.
Here's my history:
I'm 45 years old. Non-smoker. Social-to-heavy drinker for parts of my life. Played college baseball till injured, then raced mountain bikes. Raced professionally 2001-2005, and stayed fit all my life, while still having a good time...
4/17/23: Diagnosed HPV+ P16 squamous cell carcinoma in right tonsil and one level IIa lymph node 3.4 x 2.1 x 2cm mass.
6/12/23: TORS surgery removed right tonsil with margins free of tumor (closest inferior <0.1 cm) and selective neck dissection of 45 lymph nodes; the one cancerous lymph node was found, no others, and no extranodal extension. Classified at T2N1.
7/10/23: Began trial of de-intensified radiation therapy (HCC 22-030) for three weeks consisting of 30gy/15 fractions of radiotherapy.
Comments
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Hello, Jowdy, and welcome to the CSN H&N discussion board.
I am glad you found us and have found help here to help you deal with what you are going through.
It looks like your doctors must feel confident they have gotten most all of the cancer out since you are on a shorter radiation schedule.
I am so glad for you because radiation has long-term effects so the lighter dose will put you less at risk.
You are very physically fit so that should make a difference too, I think especially a quicker recovery after and from the radiation.
It will be interesting to see how the lighter dose affects you.
It looks like you are getting half the dose for half the amount of time many people on here have gotten.
Wishing You The Best
Take Care, God Bless-Russ
NEGU (Never Ever Give Up)
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Thanks for the welcome, Russ. I’m very grateful for the helpful encouragement from you, and simply from all the posts, testimonies, and tips for how to navigate treatment. Together with my care team’s guidance, I feel prepared as I can be for this relatively short but still difficult bout.
Today I have more energy, but my taste is more affected. Funny, the only thing that has been appetizing at all is Italian sausage and tortilla chips — which I’m so thankful that I can still eat! Doing my swallow exercises all day!
I’m not looking forward to the next two weeks, but I know it won’t be as bad as many others have it, and that helps keep me tough too.
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Hello Jowdy,
I am glad you found this site and are handling the treatments so far. As you mentioned, a bumpy road lies ahead. I am not sure if your Doctors suggested "Magic Mouthwash" to you or not, but it takes the edge off of your discomfort and many use it just before eating. I was unaware of such an item when I went thru my Radiation and the Nurses suggested the Baking Soda and Salt solution. It consists of 1 Teaspoon of each in 1 Quart of room temperature water. I would sip, rinse, gargle as needed to take the edge off of any discomfort in my mouth. As I moved into week 4, I increased it to 1 Tablespoon of each and rinsed, gargled as often as 20-30 minutes if needed.
I imagine you took a look at the SuperThread at the top of the page where there are a lot of good suggestions to help you get to the finish line.
My Best to You and Everyone Here
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Hi Jowdy,
Glad to hear you are almost done with your radiation treatments. I also had the TORs surgery and received a somewhat shortened protocol of 5 weeks radiation therapy as I was not eligible for the 3 week trial.
Keep eating as much and whatever you can is my best advice. Even if you have to blend everything getting a lot of calories will help you heal. My body needed tons of extra calories to heal from the treatment and I tried to get 2500-2700 a day. It took a lot of weight gain powders and smoothies but feel it made a difference. I'm 6 months post TORS and 3 months post Radiation and chemo and at this point taste is about 60% and I can eat almost anything if I take my time.
Good luck and keep us posted,
Smitty
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Thanks Smitty and Marine for your encouragement and insights. I just finished my second week of radiation, and I'm oddly feeling better than I did at the end of my first. This may be because I began taking Zofran for nausea. Perhaps my body has figured out how to respond to the bad stuff, or my expectations are more realistic.
My care team has pushed the salt/baking soda rinse on me since the beginning, so I've been using that, which does help to cut the acidity that comes on sometimes. I'd been swishing with salt water ever since my surgery to aid healing, so that was easy enough.
I do wish that eating was easier, but I shouldn't complain. I get very nauseous as soon as foot hits my lips (or even smell most things), and my taste buds make everything taste rancid or like metal -- but I can still eat some spicy foods, and of course the high-calorie shakes. (I was in the middle of training to race again when I was diagnosed, and had to put on 10 pounds of fat before my surgeon would operate, so I just kept up my 5-6k cal/day regimen but almost no cardio. Got on 14 lbs in 4 weeks!) But I obviously don't have the appetite for so much now. I'm forcing down enough to get around 3k cal/d now, so weight is holding steady.
To update my progress here:
7/17: I felt great after having the weekend off radiation. Never looked forward to Monday like I do now!
Began taking Ondansetron (~Zofran) for nausea. It helps a little, keeping the metallic taste away...maybe. But does seem to help me feel better in general.
7/19: Had a bit of a breakthrough at PT today. My physio is schooled in neuro-muscular connections, and we began using e-stim (electronic muscular stimulation) to activate my upper and lower trap to get proper form while doing my pt exercises. My body felt like it was finally doing the right thing. This practice has shown evidence to aid re-establishing the connections within the accessory nerve, and I already see my trap and sternocleidomastoid coming back stronger.
7/20: Feeling pretty crappy again, just general queeziness and rundown. But still getting to work and PT.
7/22: Feeling better than last Friday. Zofran seems to be helping. Now I have the weekend to repair and bolster up for my final week of nuclear war.
Huge thanks!
J
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Sounds like you are dealing with all the ups and downs with a positive attitude which really helps. Thanks for sharing the e-stim treatment as my left trap muscle is lagging and I completed PT and am on my own. I’m definitely going to explore this option.
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Smitty — I assume with TORS your accessory nerve wasn’t cut, correct? Mine was not. I was told “about two months” for it to start working again and another couple months for it to be ~100%. I’m sure that’s an estimation for my particular procedure, but I’ve been wondering what others’ recovery timelines have been. Of course, I really want mine back asap… Without the trap and sternocleitomastoid working, any two-hand upper body activity is compromised, and I’m concerned the bad form will cascade to other bad things, injury, etc.
Focusing on physical activity is just about the only thing that prevents me from feeling like crap.
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Jowdy,
I had a left neck dissection a month before the TORS surgery. They did not cut the nerve but had to move it around to dissect some of the lymph nodes that were removed. Morning after surgery I could barely move my left arm to shoulder height. The lower left lip was also impacted and I have a crooked smile. My shoulder responded to PT somewhat but it’s still a long way to being fully functional like before. This is 7 months after the surgery. Not sure I’ll ever be able to do a pull up again but I was told by neurologist that it’s still early in the healing cycle for nerves and it can take 18 months or more. I may not regain full function but it beats being in the ground so I’ll take it.
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Howdy Folks,
Hope yall are well. Well, I completed my 3-week rad treatments, and went out with a whimper rather than bang... That is, I feel like I got a distinct taste of the significant side effects that most of you have endured, and while I've always insisted on the old Buddhist adage, "Pain is inevitable, suffering is not," I'm not sure how I could've avoided the brief suffering that the past few days have presented, short of skipping the radiation. I'll detail that below for others to see.
Two big tips: I started putting a peppermint tea bag in my baking soda/salt magic mouthwash, and that really helps the feeling/taste. The peppermint doesn't burn like most mint flavoring. And: Xylimelts! Probably on the superthread but didn't see it. My nurse recommended these, and they're awesome for keeping my mouth hydrated.
First, Smitty, yes, I certainly encourage getting another PT/OT script and hitting the e-stim hard. It has helped me hold proper form while doing the movements, and the effects seem to persist into the following day -- which my physio says is an indication of the nerve engagement returning. I'm going to find a medical-grade e-stim setup I can use when I go on vacation next week, I hope. Also, this probably goes without saying, but it helps if your physio is a bit of a brainiac... digging into the research about this stuff definitely has helped me. Mine found some good papers and a meta-analysis of studies on exactly our situation. I don't have the links to those, but she did base some of our routine on this one: https://academic.oup.com/ptj/article/81/3/936/2857643 Also, I'm still looking for another physio that can do accupuncture (or "dry needling" as the sports guys call it). I had great success with that in the past when I tore my quad, so it should help me in this situation... we'll see. Your mileage may vary -- not everyone responds to it.
I'd like to know how others have come back from this accessory nerve palsy. I plan to start a new post dedicated to that.
7/24: Hate Mondays even more now. Taking the Zofran to ease the nausea. Getting by. Nibbled on some pizza, somehow, and downing smoothies.
7/25: Second day of my third week and I already feel more beat up than usual. Nauseous, so I've just switched to all-liquid. Got a case of Boost VHC to top off my usuals. Pretty constipated.
7/26: Out of nowhere, I feel pretty good. Got some work done and had a great visit with an old friend from out of town. Still nauseous, but banging back the shakes is easy.
7/27: Here's where I start to feel like ****. No appetite and run-down. Still able to sip down about 2000 calories. Jaw is feeling distinctly worse. And totally constipated/plugged up. I got some colase to soften things up but not working yet. Saliva is markedly diminished, and that thick throat mucus starts in earnest.
7/28: Now my mouth is starting to feel truly burned -- tongue, right inner cheek, down the throat. Also, the inflammation in my jaw feels like I just got out of surgery. Opening and closing hurts, and I have been able to get in three fingers, but now it's more like two. So sick feeling. I barely get in one big shake before bed. Start to notice my neck/face hair is thinning, and my neck is getting proper burned. Also, I have a few places like liver spots or nicks on my face. Still plugged up, so I take some dulcolax.
7/29-30: These two days are horrible. I don't want to move much. But I think a walk will help. It makes me feel worse. I force down some soy milk and protein, but gag the whole time. I basically don't eat these two days, but stay hydrated. The dulcolax kicks in and I have the most painful bm ever. I had a fecal impaction and had to lube up a gloved hand and get it out (as directed by a doctor).
I begin to regret getting radiation, but stop short of that rabbit hole, with some reassurance from my awesome wife who's doing everything for me. I'm worried about not eating, losing weight, etc. I decide I just need rest to recover, and knock out early with an ambien.
7/31: I slept for 13 hours, and wake up feeling so much better. Still crappy, but I'm sure yall know -- one tick up from the bottom may be the greatest relief. So far, I've had two shakes and some pureed soup. My stomach feels pretty fragile, so I'm easing into eating... Because I seem to be moving past the nausea and I'll probably be able to drink my meals ok. But from an athlete's view, not eating is scary. I've fasted before, but that of course is different. Now I'm looking forward to putting some weight back on. My tastebuds are trash. Pretty much everything tastes horrible, and spicy stuff hurts. Mint hurts. But now I feel like I'm done with this f'n poison and can begin healing.
I am still worried about side effects emerging/coming back, but eating and resting seems to be the key. PT tomorrow, so we'll see if that helps me feel better.
Thank you again, everyone, for your encouragement and tips. If you have more, send along.
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Jowdy so glad you made it to completion.
As you have found out there is a whole new set of experiences involved in H&N treatment from nausea to feeling good to feeling bad to problems with bowels and eating and inflammation, pain, feeling bad again, and feeling tired and just plain beat up. Imagine doing 7 weeks. It was the toughest experience of my life. The side effects will diminish and eventually mostly go away except for a little that is permanent but hopefully, it won't be much. For now, do what you can all you can and eat all you can but when you are tired rest, listen to your body.
Take care, God Bless-Russ
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Howdy all. @wdidg I detailed my immediate side effects during the final week of radiation, and the horrible week following. That week after was definitely some of the worst in terms of overall feeling, but I was able to swallow down enough shakes that I wasn't still losing weight. I just had to rest and take it and meditate as much as possible because even walking around outside didn't help me feel better. Now it's about 7 weeks since I concluded radiation, and I've got all my weight back (but definitely not the strength/muscle, but getting there). My taste is slowly coming back, but it's very altered and I have a lot of inflammation & stiffness in my jaw and neck. It seems like that went away a few weeks ago and has come back... but that may be because of exercise.
I should also note that I wake up sore and really stiff every morning. Best thing has been a hot shower and PT first thing to loosen up.
Also, I've tried to be a test case for how quickly one can come back muscularly from the accessory nerve irritation that comes along with the neck dissection. Like I detailed above, lots of PT and NMES exercises have helped, but so far only my sternocleidomastoid and upper trap are "re-activated" much. Mid and lower trap are still flaccid and atrophying -- which I hate. My docs are great, but they really misrepresented how quickly that would come back. All the research I've seen says 6-12 months, though they said maybe 1-2 months. Jeez. The study I linked above suggests that ~6 months with intensive PT is about as good as you can wish. So I'm working for 5. It's been 3 months since my surgery, so I'm gunning for it. Kayaking is really good PT btw.
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I had right neck dissection and I did not expect this shoulder pain at all. My nerves are just flaring and it’s very hard to use or even touch that shoulder. What an unexpected consequence. I’m 4 months post surgery.
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Hey all. Quickly here — at 6 months postradiation now, i’d say I have about 95% of my taste back. Which is pretty great. My tongue and jaw are still a little stiff in the morning but they warm up fast.
As for shoulder issues… I think that the effects of the spinal accessory nerve shutting down due to the neck dissection are quite extensive, and neglected during discussions with surgeons. My surgeon is one of the best in the country, but he still thought that my trapezius and SCM muscle would be innervated in 2-three months. In fact, that would be impossible, as the innervation proceeds at about 1 mm per week. After a lot of anxiety about my muscles not coming back, I’ve gotten loads of testing and working with neuromuscular specialists, and I found that I’m basically right on schedule… But, to answer your question:
I did have a lot of pain at three, four, five, six months after surgery… and that seems to be due to my scapula not retracting, which causes your shoulder to slump forward or “drop”. This caused pain across the top of my chest, collarbone, and my rear shoulder. Even though I was doing physical therapy, I still needed the advice of a bio-mechanics specialist to teach me to keep my scapulas “packed” down and inward during the day, which was really tough at first, but now has led to a lot less pain and my body working a lot better as I work out daily.
If you’re not going to PT, try, looking up exercises for your subscapula. Those are likely what you should be doing.
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