52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer

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  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Thanks for the info. I’ll see what I’m capable of eating in the next week so but ok with just the tube for now as it’s getting me 2700 calories a day and it’s made for wound healing with lots of protein, omega 3s , etc.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    edited January 2023 #43
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    Headed home from hospital after day five post TORS surgery

    So far I reduced my last two doses of opioids in half with no major change in pain so glad to be losing that crutch. The week was a blur of little sleep and lots of discomfort but five days down already is a good thing. If you plan on not sleeping and enduring this necessary hospitalization it makes it bearable. I know the next few weeks will be tough but glad to be over this first hump I followed the advice given in the head and neck super thread and have some supplies waiting at home for me to make life easier such as mouthwash, liquid thickener packets etc. Ordering from Amazon and being up all night on painkillers can be dangerous! I may have some boxes I don’t remember ordering when I get there.I can’t thank the nursing staff enough at this institution. They are specialists in ENT nursing and kept me safe and comfortable. I’ll update this thread once I’m home and better rested but I I feel prepared for the next steps in recovery.

  • steven59
    steven59 Member Posts: 100 Member
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    After surgery that 5 mg oxy hit me like a sledgehammer, a nurse would have to come in and put me on oxygen my 02 levels would get below 70! I was afraid to go home. I was discharged 6:30 a.m. thursday. after about 5 days I was able to sleep without worry of never waking up again. Healing for me was progressive rather than steady, but within a week and a half I was off pain meds, with discomfort, eating confidently within the first month and by 7 weeks I was getting taste back and eating like normal. My saliva was still reduced by half and they say that could improve over time. I know hard the next couple weeks will be for you but know the healing is already started.

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Smitty, congrats on going home. I pray that your recovery continues to go well and quickly. Glad you have your pain med level where you would like it. I know what you are saying about being in the hospital you really don't get good rest there. I agree with you on the nurses and everyone else that took care of me they are so good and were so nice to me and they are a compassionate bunch. May God watch over you and strengthen and heal you, trust in him.

    I celebrate with you, nothing better than going home.

    Wishing You the Best

    Take care, God Bless-Russ


  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    The new routine

    Just like that it’s already been a full week since my TORS surgery. My post op report was published to the patient portal and it ended up being a more complex procedure than I thought. Besides the radical tonsillectomy and base of tongue resection, tumor was also found in the lateral pharyngeal wall and excised. So I have a flap closure. I’m so thankful they got the cancer out and am waiting on pathology confirmation of clear margins for all they took (Tonsil already came back clear!) I’m noticing very small incremental progress on healing but still not fun at all . Mornings are best and nights are the worst but being home is a tremendous blessing. I’m hoping to get more sleep as I taper off the steroids the next few days. The tube feedings are a challenge and I need to space them out to tolerate the volume and avoid reflux and discomfort. My home care nurse came out for the first time today and all vitals are good. She was happy with my pain management but warned me to take the Oxy if needed and don’t suffer. Things are”waking up” and I’m getting more nerve pain in face and ear so I’ll see how that goes. Swallowing still is not there but able to get a little of my own spit down. I hope that gets better as my follow up is the 25th and it would be great to have the NG tube removed but at this point it seems like a tough goal. Playing the mental game and staying as positive as I can knowing this temporary real bad time will be worth being cancer free

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Hi, Smitty, well explained. Your situation seems like you are handling things well considering all you have endured so far. I am so glad for you that the tonsil came back clear margins and praying any other tests on areas are clear also. Wow a week has gone by already, sure went fast. Yes this is a temporary bad time so hang in there and stay tough. Recovery is usually slow but steady. Being home is great even though you don't feel the best just yet. Maybe do a couple little projects like clean out some drawers or something if you feel up to it to help the time pass. Anyway do what you need to and glad the nurse gave you a good report. Good to have that visit cause it gives you a chance to ask any questions and makes you feel better because they can spot any potential problems while they are there.

    Wishing You and the Wife the Best

    Take Care God Bless-Russ


  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Thanks Russ. I really appreciate your support.

  • LuvnTN
    LuvnTN Member Posts: 75 Member
    edited January 2023 #49
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    FYI - two weeks after my surgery, I went in for a check-up.. and to have the feeding tube removed. Up to that point, I still had not actually swallowed anything; however, I was leaving town.. and decided that I would figure it out. So, the tube came out. I bought some pureed baby food packets at a health food store, and went on down the road (across the country). After two days.. I could only drink water. I was starting to get really weak from no food.. and, at that moment, I was in pretty bad shape both physically and mentally. In my head, I didn't feel like I could swallow anything solid. It was probably the lowest point in my life... that moment. I told my wife that I might not make it through the night - and I was serious (we were out in the middle of the Arizona desert). We started looking for clinics that might be able to administer a nutrient IV or something to get me through the trip. Then, I remembered the baby food packets. I grabbed the "beef stew" puree, opened it up.. and said "screw it, here it goes". I squeezed the packet into my mouth, and swallowed as hard as I could... and it went right down. It didn't hurt... it wasn't difficult.. it seems like in was just all in my head at that point. When that cold beef stew puree hit my empty stomach, it was like I just got a shot of adrenaline to my heart. I jumped up, got in the driver's seat, and we sped off to the nearest restaurant we could find... and I ordered a bowl of chili smothered in grated cheese and sour cream. I sucked that chili down in like 5 minutes. From then on, things just got better and better. Looking back, I probably could've forced something down earlier; however, I just got so used to the feeding tube. In my head, I thought swallowing solid food would be too painful.. but, it wasn't.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Thanks I needed to hear that story. Since i slightly aspirated in the hospital I do believe it is in my head a bit. I’ve been swallowing the thickened nectar they gave me after each feeding. It seems my mucus is thinner after the tube feed. However it’s only been a teaspoonful total. I’m going to see if I can increase the volume a bit this week. It would be fantastic to get the tube out on the 25th. I know they will be testing my swallow then. as well.

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
    edited January 2023 #51
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    LuvnTN that is an interesting story but you are lucky you survived without being hospitalized. Did your medical folks not ask if you were maintaining your weight by eating? I am not sure why you got the feeding tube out without being sure you could eat by mouth but you did. Not a wise move which you found out. I do not nor do the folks that treat cancer patients recommend feeding tube removal unless and until you can maintain your weight for 2 or 3 weeks by eating by mouth only. They would not remove mine until I could maintain my weight for 2 weeks by eating alone. I could have told them sure I am eating and maintaining my weight when in fact lets say I wasn't but who would I be kidding. Also anyone going through this H&N treatment that has a feeding tube should be paired with a speech therapist that will give you swallowing exercises to do and help with any problems you may encounter. You should be doing swallowing exercises because you can forget how to swallow and would have to relearn it. LuvnTN glad you made it through alright. But anyone reading this thread, I would personally suggest based on experience and medical professionals advice that you not have your feeding tube removed until you can maintain your weight eating by mouth for at least 3 weeks as stated in the Dana-Farber Cancer Institute for one reference--and there are certainly more references. I am sure they recommend 3 weeks because it works the best. But it is certainly your choice till it's all said and done. Link below for Dana-Farber cancer Institute.


    When can your PEG be removed?

    Your PEG can be removed when you are able to keep your weight stable for at least three weeks without using your tube.

    Again LuvnTN I am really glad you made it through but I think you took quite a risk and you were definitely hurtin for it considering that at one point you thought you were going to die saying "you didn't think you would make it through the night". I don't know how you could suddenly start eating when you hadn't eaten by mouth for awhile unless it was a survival affect kicking in. I am thinking you could have eaten all along but were using the tube, I don't know. I think God was watching over you.

    One last time folks my opinion is to not have your feeding tube removed unless you can maintain your weight for 3 weeks eating by mouth! My opinion on this is based on personal experience and the advice of the medical professionals directing my care and cancer treatment articles on hospital and cancer treatment facilities websites.

    LuvnTN Wishing You the Best

    Take Care God Bless


  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    edited January 2023 #52
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    Ten days out from surgery

    Last night and today brought a few small victories. Finished the steroid taper and starting to rest more at night. Maybe an extra half hour of napping but I’ll take it. I also found a great article in the super thread on dysphagia that explained the swallow challenges with my specific surgical repairs. This led me to a HNC video of exercises such as tongue mobility, stretching and others. I’m doing these 5 times a day and I can now swallow my spit successfully with a lot of effort and concentration. My chief complaint is the nose tube bridle. It’s sore and painful. A topical neosporin ointment helps temporarily. I’m going to ask for topical lidocaine at my follow up. It’s still difficult to get the total volume of tube feedings that my care team wants me to ingest, but I’m spacing them out and doing a small feeding at midnight to get to my goal. I stopped losing weight and kept steady the past three days. Next goal is to get a little more apple juice nectar down using the positional swallow head tilt technique. I’m up to about a teaspoon a day.

  • LuvnTN
    LuvnTN Member Posts: 75 Member
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    wbcgaruss, yes... DO NOT DO what I did. It was a very untimely decision that was made because of some pretty unusual circumstances; however, timing was of the essence, and... yes, I thank God I made it through. The doctor gave me the option... and just said that if they have reinsert the tube, it will not be very pleasant. I was just drained, energy wise, to a point I had never been. I have fasted for 5 and 7 days straight years ago.. so, I felt a few days shouldn't be too bad. However, I never became energy-drained like I was that day. It was a weird day.

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Smitty thanks for the update. A good idea on the exercises and swallowing. You are having small victories but they will slowly turn into bigger ones till you get to the big one NED.

    Take Care God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Pathology report became available today and was signed by surgeon. Clear margins and no evidence of spread. 😀

  • big G
    big G Member Posts: 177 Member
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  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Congrats, Smitty, best news ever, you are certainly Blessed.

    Take care, God Bless-Russ


  • steven59
    steven59 Member Posts: 100 Member
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    congratulations, makes the treatment worth the cure.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    edited January 2023 #59
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    Follow up visit today to plan radiation treatment and cleared for NG tube removal.

    My post surgical follow up and speech therapy appointments today could not have gone better. I was cleared for NG tube removal right way but opted to keep it until Monday so I can work my way up to enough caloric intake by mouth on a liquid and soft food diet. My throat is healing well but very sore and I surprised myself and was able to pass the swallow evaluation. Once i got past the mental hurdle of swallowing liquid, I went to town on the apple juice and finished it all and it was so good! Its very slow going with the positional changes and effortfull swallows required to get things down and it’s going to take a lot of time to eat all the calories i need. I have a full list of daily exercises to do to strengthen my swallow and help my speech, but I have all the time i need right now still being out of work.

    My surgeon confirmed the pathology of clear surgical margins and that the primary tonsil tumor was very small, and I won’t need chemo. I dont need throat radiation but will need radiation to my neck only where it had spread to one level 2 lymph node, but am a candidate for a low-dose trial. I’m scheduled to begin radiation therapy in about 6 weeks. My next PET scan is scheduled for July and I took another NavDx blood test today. I did develop a rash on 2/3 of my body that they think may be medication related. I’m stopping the acetaminophen as I’ve been on it since my Dec 12 neck dissection, and hopefully that resolves it. Also still have the residual effects of the neck dissection such as tightness and nerve pain to deal with but its slowly getting better. Also have a physical therapy consult in a few weeks to work on getting my shoulder function back that was impacted by the neck dissection.

    It’s almost surreal that I’m done with all the surgery and well on my way to eating normally again. Thanks again to everyone on this forum who posted and commented. It was a tremendous help. I’ll keep posting progress updates and also look here for advice and guidance on prepping and dealing with the radiation.

  • wbcgaruss
    wbcgaruss Member Posts: 2,366 Member
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    Smitty great news clear margins, feeding tube out soon and light radiation and it sounds like you are feeling better and improving your swallow and getting your shoulder function back. You are well on your way to recovery and being cancer free. Thanks for your update, say hello to the wife, because we all know our spouse suffers and worries and cancer is a load on the whole family.

    Wishing You the Best

    Take Care God Bless-Russ

  • big G
    big G Member Posts: 177 Member
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    Smitty, it seems like you just started but, your progress can't be denied. You are well on your way to recovery.

    Your throat will be sore for a little while and I might add that I had a slight lisp due to the swelling of my tongue from the surgery for a month or so. After the swelling subsided my speech returned to normal. Continue to heal and thanks for the update.