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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    Swoosh,

    I received Intensity-modulated radiation therapy (IMRT) at the University of Pennsylvania hospital. I read that VMAT is an enhanced form of IMRT. They do have proton therapy available at this hospital, its actually called the proton center for treatment. Since my tumor and affected lymph nodes were removed prior, I was not the ideal candidate for proton therapy since there was no specific tumor to target. They concentrated the rads in the lymph node beds of my left neck to mop up anything remaining.

    Smitty

  • Swoosh13
    Swoosh13 Member Posts: 75 Member
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    Smitty, really appreciate your response. We just got a consult appt at NWM in Chicago for Aug 8 next week and we can then make a more informed decision. They do have Proton also in Warrenville west of Chicago and possibility also NW Lake Forest only 1 hr from home.

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    Hey great now you are down to an hour's drive one way, that makes a difference, skip the get a room idea I posted earlier. My things are changing fast for you.

    Take care, God Bless-Russ

  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    6 month scans show NED

    I had an MRI last week that showed NED! I also completed my lymphedema treatments and opted to pay out of pocket for a once a month massage for manual drainage as there is still some swelling and discomfort, although greatly reduced. Taste buds are pretty much normal with some things tasting a little different. My strength and stamina keep getting better and I've gained all my weight back. I feel grateful and blessed to be where I am at this point. I still have swallowing issues with bread and rolls but nothing that cant be overcome with extra chewing and water to wash it down. My left arm nerve issues have also greatly improved and I have 80-85% range of motion, with some stiffness and soreness. Life is good and I don't take a second of it for granted.

  • steven59
    steven59 Member Posts: 100 Member
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    Congrats on your recovery progression.

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    Smitty, thanks for the update.

    So glad to hear that your scans are all clear and no cancer is near and nothing to fear because NED reigns supreme.

    I believe someday the lymphedema will not be an issue anymore but so glad a monthly massage relieves it for now.

    It sounds like everything else is improving and going well.

    As far as swallowing, it will probably improve slowly over time but if it seems to not be improving at any point you may want to consider asking your doctor if he thinks throat dilations would help. I had 4 after my first cancer and they definitely helped. You usually see a gastroenterologist for those.

    Left arm and range of motion are good how can you beat that?

    Not taking life for granted, heck no cherish every minute of it. And getting cancer really brings it home to us, one day everything is fine and then that cancer diagnosis and suddenly things are different and you have this roadblock in front of you and can't move forward with life till it is removed. And not just cancer but any major life-threatening issue sheds a whole new light on things.

    Smitty, Wishing You The Best and an unlimited number of NED's your way.

    We celebrate your 6-month milestone, you fought the beast and won.

    Take Care, God Bless

    Russ



  • big G
    big G Member Posts: 177 Member
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    Congrats on your NED Smitty! Hope you have continued success.

  • GarlandCan
    GarlandCan Member Posts: 17 Member
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    Your posts are helping me so much to know what to expect. I honestly had no warnings or was told anything about what to expect before surgery. It was just sugar coated and I was in no way prepared for what I went through. Now I’m facing radiation and possibly chemo and I’m still healing from surgery! It’s all so overwhelming. I’m trying to be ahead of the “game” this time before radiation starts. So thankful for this site. 🙏🏻

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    We are here for you Garland!

    I gave you a return answer on your other post.

    You will get through this.

    Lean on us and ask anything we may be able to help with.

    It is hard for medical people to prepare you for everything you are going to go through.

    This treatment is tough but doable.

    One day at a time.

    NEGU (Never Ever Give Up)

    Wishing You The Best

    Take Care, God Bless

    Russ



  • SmittyFromCuse
    SmittyFromCuse Member Posts: 85 Member
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    1 year checkup with surgeon

    Quick update - I met with my surgeon for a one year checkup. He scoped my throat and said everything looks good! My next set of scans is in March (chest x-ray and head/neck MRI) for my April visit that will mark 1 year after completing chemo and radiation. Minor swallowing issues persist primarily with bread (a big fat hamburger is a challenge) but nothing that keeps me from eating it slowly and with plenty of liquid. Also still some mild to medium lymphedema near the surgery and radiation site on my neck but I'm managing it well. Take care all and God bless!

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    Thank's for the update Smitty, it is hard to believe it is a year gone by already.

    I am so glad for you that your latest checkup is very good and pray that your scans in March will be NED, Unremarkable, Nothing Seen, etc.

    You are adapting to your new normal as we all have done.

    So Smitty-Take Care, God Bless

    Russ

  • GarlandCan
    GarlandCan Member Posts: 17 Member
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  • GarlandCan
    GarlandCan Member Posts: 17 Member
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    Hi Russ,

    How are you? I hope life is great! 😊 I’m 7 treatments in of 35. I feel like I’m in the calm before the storm. I have dry mouth, mildly sore throat, no appetite and I’m very aware of my swallowing, which sounds weird but I can sense this will get worse. 28 seems like so many many more!! I guess it’s 1 day at a time?

    NEGU!!

    Garland

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    Hello Garland I am doing pretty well. How time flies, 7 treatments already, wow. The effects you are feeling will get worse sorry to say but you just have to learn to deal with them the best you can till you get past this treatment. Your effects may not be too bad it varies per person but it is still not nice at all. But you can feel good each time you get a treatment that those cancer cells are getting killed and you are one bit closer to being cancer free. You got this Garland, and you know how to do it one day at a time and NEGU!!

    You may be getting to the time when your saliva will get thick. You can rinse as often as needed to keep it cleaned out and your mouth feeling better with a salt and baking soda mix I will post below. As for dry mouth for now just use water, juice whatever you want to sip on to keep it from being dry and if you can get chewing gum with Xylitol in it and there is a product called Xylimelts that is a lozenge you put in your mouth and it adheres to your tooth or gum so it can be put in over night because it sticks and you won't swallow it at night. I will post those below also.





    Garland Here Are Recipes

    For the salt/baking soda mixes.

    Rinse as often or as little as needed to deal with thick saliva even the stringy stuff.

    The trick is to stay ahead of it as best you can.

    There are no easy solutions but this will eventually quit.

    You may find it beneficial to sleep in a recliner to keep the thick stuff out of your throat and airway.

    Laying down directs it to the back of your mouth/throat area.

    Even in a recliner I would wake up at times with my air cut off and had to work at getting it cleared out.

    Wishing You The Best-Take Care-God Bless-Russ

    Mouth Rinse Recipes to Use During Chemotherapy

    Soda and Salt Mouth Rinse

    1/4 teaspoon baking soda

    1/8 teaspoon salt

    1 cup of warm water

    Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

    Soda Mouth Rinse: A Good Rinse for Before You Eat

    1 teaspoon baking soda

    1 cup of warm water

    Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

    Saltwater Mouth Rinse

    1/4 teaspoon salt

    1 cup of warm water

    Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

    Salt and Soda Rinse for Gummy Mouth

    Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

    1/2 teaspoon salt

    2 tablespoons baking soda

    4 cups of warm water

    This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

    Peroxide Rinse for Crusted Sores

    If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

    1 cup hydrogen peroxide

    1 cup water or

    1 cup salt water (1 teaspoon of salt in 4 cups of water)

    If you have crusty mouth sores, try using this rinse three or four times a day for two days. Don't use it for more than two days at a time, because it could prevent mucositis from healing.

    Use a non-peroxide rinse for two days, before returning to this mixture.

  • wbcgaruss
    wbcgaruss Member Posts: 2,373 Member
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    One other thing Garland as you progress in treatment and have any problems and situations that seem abnormal to you as far as effects from treatment or normal effects that are bothering you quite a lot always lean on your care team, that is what they are there for and they want to help you. I know my care team had someone on 24-hour call if I ran into a situation and I did call them one night because of a high fever about one in the morning. Don't tolerate pain if you get it your docs should provide you with any pain meds you need, nobody should suffer in pain while going through this. And also ask questions and search on this forum for answers, these people have all been where you are going and know what you are going through and we are glad to help.

    Wishing You The Best

    Take Care, God Bless

    Russ

  • GarlandCan
    GarlandCan Member Posts: 17 Member
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    Hi Russ,

    What a blessing you are 🙏🏻 I am going to start some of these rinses today. Warm water rinses definitely feel good and now I know what to add. Thank you so much. I’m 25% done with radiation. My sweet husband is doing his best to keep me motivated and strong. He got my favorite donuts and a cup of coffee this morning to celebrate being 25% done. It sure helps having someone to go through this with. While I’m getting radiation and strapped to the table I repeat over and over “God is with me” and it helps me through it. I noticed today a few blisters in my mouth. I can see soon that a soft food diet will be necessary as my throat hurts more today as well.

    Thank goodness for this wonderful forum and thank you Russ for your time.

    May God continue to bless you.

    NEGU!!! 🙌🏻

    Garland