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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    Just a quick update: I’m swallowing slightly better each day. Throat is sore by the end of the day so I am consuming most calories before dinner. I bought a VitaMix and it’s a great tool. I had purée venison stew tonight and it was so satisfying. Water and juice require more concentration and effort but so far I can sip it throughout the day. My first radiation consult appointment is a week from today.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Great deal Smitty, things are going in the right direction, a little bit every day. thanks for the update.

    Take Care God Bless=Russ

  • steven59
    steven59 Member Posts: 100 Member
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    Hi Smitty, We are on similar paths me a couple months ahead of you. I had a swollen lymph node and scc in my tonsils on both sides. My SOTA surgical team had Dr's working the tors machine while another surgeon or two removing the lymph nodes in my neck also both sides.

    First I want to say that for the most part I was at full strength by the time radiation started. second, I was asked to participate in several 'trials', most scc hpv+ don't get cancer on both sides making me a bit of a concern, but none of the trials were groundbreaking or NEW. I'll be strait with you, surgery like we had is only a warm up for a full 30x full strength rad treatment, it's barbaric and takes us past our limits. That said, for your own sake please research reduced rad treatment success vs full and cancer recurrence and ask your dr/intern questions because we don't want to do any of this again.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Thanks for sharing that info Steven. I agree I don't want to go through surgery again and will see what the oncologist has to say and then weigh my options. I only had the left tonsil tumor and one left side lymph node positive. However the node was matted and had a small amount of extracapsular extension which is why rads were recommended. I have one wisdom tooth still in my head but thankfully its on the right side so I don't think I need it pulled if I'm only getting left side radiation. The surgeon thought I would not need rads on my throat just the neck but I'm not sure what that implies as far as side effects. I know my cancer facility has a proton machine which I read is one of the better options. I'm also not clear on how the rads will be administered. If I don't have an active tumor will they "paint" the neck area where the bad node was taken out? Right now I'm focusing on getting back to full strength as you said. I've been experimenting with very soft foods like canned deviled ham spread (some say its gross but at least it has some texture to it!) and can eat ice cream and yogurt now without having to blend it. My tongue and teeth still feel like I had a novocain shot which I assume is nerve related but I'm getting used to it. I should be cleared next week to get off this blenderized diet.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Smitty if you need xtra calories to bounce back you may want to consider Boost Very High Calorie for a short period.

    I think it has always been one of the themes on here that we want to get the cancer in one shot and that is what your care team is doing for you giving you the modality of treatment to rid you of this cancer.

    I remember my radiation oncologist said to me "This is a One Shot Deal" meaning to get rid of this cancer.

    Wishing You the Best

    Take care, God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
    edited February 2023 #67
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    Outcome for Radiation Oncologist consult

    After a brief follow up with my speech therapist (she had me eat a graham cracker dipped in applesauce then told me to start eating all soft foods I can tolerate - yay!) I saw my radiation oncologist. My staging is  Stage I (pT1, pN1, cM0, p16+). My plan is 5 weeks of 50 GY treatments. Not sure if it will be proton or photon - that is up to my insurance company I was told. He also wants me to consult with the chemo doctor as I'm on the borderline of needing chemo based on the lymph node capsular spread being so minor (less than 1 mm). They want to discuss pros and cons. Next steps are a dental visit to get a cleaning and clearance for treatment, and then to schedule my radiation simulation appointment. Lucky for me the start date of the 5 weeks is the second week of March so my Florida trip the first week of March I thought I had to cancel is a go. My goal is to be able to eat something off the menu of the restaurants when I'm down there, which is attainable. Maybe not a steak but hopefully some soft fish and soups etc.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Great Smitty, you got the go ahead from your speech therapist.

    Treatment plans all laid out.

    Dental visit all lined up.

    Radiation simulation.

    A little break in Florida and some good food.

    Then on to the final leg of treatment.

    THEN

    Next step NED (No Evidence of Disease)

    Sounds like a great plan Smitty.

    Best wishes-Take Care God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Thanks Russ. It’s not been easy but staying positive does help. I have my moments of frustration but get out of that bad mindset by being thankful for my care team and support from family, friends, and this forum. I’ll be back at work after March 25th when my disability runs out but am thankful I can work from home while finishing up my last 3 weeks of treatment into early April.

  • MarineE5
    MarineE5 Member Posts: 1,032 Member
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    Smitty,

    I am glad to see you get a small breather and get away to forget some of this for a spell. Now that you have the basic plan for treatments which almost always includes Radiation ( I had Radiation Only after my Surgery). The Surgeon and Oncologist will present what they think will be best for you. You, like so many here only want to do this once. I mentioned to my Team that they could hit me with the kitchen sink if they thought it would help.

    I have been following your posts and the replies. Take Care Marine, Semper Fi

  • big G
    big G Member Posts: 177 Member
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    Sounds like things are progressing well Smitty. I'm sure your team will point you in the right direction. I had the Tors and 33 rad treatments, No chemo. I believe mine were 54 gy until the last 3 or 4, and for those, I had a high dose to the base of tongue tumor site for a shorter period of time.

    Sounds like you have everything lined up and enjoy your trip. Keep the faith and good luck.

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Second Opinion

    I decided to seek a second opinion on my radiation and chemo. I am not eligible for the 2 week low dose clinical trail at my current provider due to not having the NavDx test early. I did not get the blood test it until after the lymph node that was positive was removed by my ENT. My NavDx scored a 95 on my pre-TORS test and a zero (yay!) on my post surgery test. To be in the trial you had to have a 200 or above on the first NavDx. But I meet all the other criteria based on me being stage 1 and only a small locoregional spread. My Oncologist said it is likely I would have scored 200 or above before the matted and inflamed node was removed.

    So I decided not to accept that I cant have this option to what amounts to an administrative criteria and I have a video consult with the Mayo Clinic in Jacksonville Florida next Friday. This may delay my treatment a bit, but the Mayo clinic routinely treats HPV+ HNC patients with certain criteria (which I think I meet) with a 2 week radiation protocol without having to be part of a trial. My Radiation Oncologist at UPENN understands that I want to explore alternatives to the 5 weeks he prescribed, and is holding off on scheduling my simulation.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Well, Smitty, you are definitely pursuing non-traditional treatment and I hope everything works out for you to be rid of this evil disease.

    You were seeking to be in a clinical trial and usually, folks on here would reserve drug trials or clinical trials for an alternative after other treatments like the standard 35 rads and added chemo had not eradicated or controlled the cancer or after the standard surgery with follow-up chemo and rads or just rads sometimes to mop up errant cancer cells. For the simple reason that it is a trial and not completely proven yet.

    Feel free to correct me if I am off base on my perspective of your situation.

    Mayo Clinic is a prominent hospital and if they have a treatment protocol that they are confident in that will eliminate your cancer that would be great. The name Mayo Clinic is well known and highly regarded and I think your care at UPENN has been very good and you are well pleased with it. So either way I think you have excellent care facilities to choose from.

    I did a quick search and found this--

    Mayo Clinic is regularly acknowledged among the very best in the nation in the following specialties:

    • Cancer.
    • Cardiology and heart surgery.
    • Diabetes and endocrinology.
    • Gastroenterology and gastrointestinal surgery.
    • Geriatrics.
    • Gynecology.
    • Neurology and neurosurgery.
    • Orthopedics.


    Wishing You the Best

    Take care, God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Russ my surgeon said I was the perfect candidate for the clinical trail at UPENN of de-escalation therapy for HPV+ cancer. Mayo has already incorporated this as standard of care for HPV+ low and intermediate risk patients. They also do concurrent chemo with the two week protocol. I've had nothing but time to research this and I'm a grad student so my University library affiliation allows me to see all the studies that would not be available to read without an institutional account. There were little differences in outcomes with the 2 week therapy vs traditional treatments. The key factors were an experienced TORS surgeon (I had basically the Godfather of TORS performing my surgery), clear margins (check) and little to no spread. That last part is subjective as I had some cancer entranodal extension of the lymph node capsule but it was less than 1 cm so that is what Mayo will have to decide if I'm a good candidate. Here is a link:

    Ill know more after next Friday

  • steven59
    steven59 Member Posts: 100 Member
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    I'm happy and hoping for you you get exactly what you need. This cancer treatment was such an emotional roller coaster for me, yaay my insurance will cover proton treatment to my radiologist telling me I'm not a candidate and the proton building has a month waiting list so I have to go the older rad. I finally just put it all in my HP's hands and let everything go with the faith that by science or luck I would get exactly what I need.

    All I can do is wish the same for you.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Each case is different and treatment changes as things advance. You are very knowledgeable about all this and have researched it well. Thanks for the response and info, it seems you have your treatment options and facilities well studied out and are all set. I am glad for the knowledge I have, but thank you Smitty for sharing this information.

    Take care, God Bless-Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Steven, I think you will be fine with the older radiation. They can still target it well but there is just more risk of good cells being damaged.

    Take care, God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    Back to reality

    Unfortunately I found out today am not a candidate for the de-escalation protocol, mainly due to the time that passed since my neck dissection. There are several factors in my disease progression that point towards having the standard course of treatment. I can't go back in time but If I had questioned some decisions made by my ENT and cancer surgeon late last year I may have spared myself additional treatment. Without going into details there were decisions made based upon false and/or unknown information that delayed my surgeries, including my own decision to delay a biopsy 2 weeks. So I'll be proceeding with 5 weeks of daily 50gy radiation and concurrent weekly cisplatin chemotherapy. Like many others, my disease journey so far involves pain and suffering from treatment, then just enough time to heal before more pain and suffering. This has repeated 3 times so far. If it means no evidence of disease and no recurrence it will be worth it but its a bummer that the cost will be potentially permanent side effects. I know there are many cancer patients worse off than me and I'll improve my attitude and get back to being positive but I need a moment to absorb this news and adjust my expectations. So much for feeling almost "normal" again. I told my wife when I was first diagnosed my worst fear was that I would not be "me" anymore after treatment. Its true I will not be the same but will have to learn to adjust and appreciate the life I end up with.

  • steven59
    steven59 Member Posts: 100 Member
    edited February 2023 #80
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    Smitty, I appreciate the roller coaster ride you're on right now, but you are talking about being in a trial...I read results from a previous trial that tried reduced treatments and results for that group were less than great. since 2014 us hpv+ have been getting more focused, reduced amounts of rad and side effects are greatly reduced. After surgery I was given 30 treatments 25 photon/ouch and 5 proton. the photon techs said their machine dosed between 1.8 and 2.0 per treatment, whatever that means, but I got 60yg and going on my 4th week since ringing the bell pain is gone, sore throat from dryness, no saliva and some fatigue, but I'm gaining weight, tho' selecting what to eat is still important to get right. I'm glad you're getting the full dose if only that you don't have to worry down the road if you did the right thing. we don't want to do this again even if it is an option.

  • wbcgaruss
    wbcgaruss Member Posts: 2,365 Member
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    Smitty, don’t look back at previous decisions made in your treatment.

    Because with treatment and with life there is always that Woulda, Shoulda, Coulda factor that comes into play when we look back.

    Just look ahead with the knowledge you have and do your best course of action.

    I know you have had your share of this and I commiserate with you.

    Three phases to deal with this is certainly a lot to deal with.

    It is the time factor also, I know we think this will never be done but soon you will be finished with the treatments. I would say that many on here have gone a year or more dealing with this disease one way or the other and till you start treatment and full recovery it is easily all but a year or more, this is not a quick process. It is measured in weeks and months.

    I agree that the suffering is no fun, how well I know but one day you will look back and have a different perspective of this whole process and be glad it’s in your rearview mirror. The suffering will be over and looking back it will seem short-lived.

    As far as permanent side effects, it is hard to say if and how many you will have and will they be permanent or will you have any at all. After all each of our cases and outcomes are different. I know one thing I realized after it was all said and done was I had neuropathy and it wasn’t going away because there is no cure and I ended up with reduced saliva, same deal, but I realized I had to learn to deal with these side effects such as sipping water or coffee and using losenges or gum or Xylimelts for dry mouth and taking Gabapentin pills for the neuropathy and if you have any side effects I know you will deal with it too. This side effect thing is part of this treatment but you may be mildly affected and not have much to deal with.

    Right now I see you looking ahead into the future and saying I’m going to have bad effects, I am going to have to adjust, I am not going to be the same, but we can’t predict the future any more than we can look in the past and change any of that.

    If it means getting rid of the disease as you said it will be worth it and in fact that is what it’s all about, your medical team wants to get you cancer free and I know they will.

    So hang in there Smitty, keep positive and count your Blessings because you still have them even though this cancer showed up temporarily. Sometimes in the worst of times I will get out a piece of paper and just start writing down the Blessings I have and you will soon have a long list and you will find the simplest basic things we take for granted mean a lot. “Count your blessings count them one by one” is a song reflecting this if you want to look it up.

    You got this Smitty-Forward we go.

    Take care, God Bless-Russ