52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
Comments
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Smitty, Russ is pretty much spot on. He has helped so many with his words of wisdom and truth.
I had 33 rad tx along with the Tors and both side neck dissection. Everyone reacts differently to treatments, depending on circumstances, etc. You just strive forward and get this right the first time. I didn't have chemo due to no extension so I can't speak on that.
I will share my Rad treatments; it was a little weird at first but I started just closing my eyes and thinking good thoughts. I believe they were about 20 minutes total. By the 3rd week I lost 80 to 90 percent of the taste but I still felt hungry so I ate anyway because I chose no on the feeding tube. Some of it depends on your actions, for example every day after I got home, I would take a cold towel and put it on my neck area because you can feel the heat coming off this area.
I ruined a few t-shirts because at night before bed I put Aquaphor on both sides of my neck. I feel this made a huge difference for me. The oncologist was amazed how well my neck looked and how I was handling the tx. No redness, or anything. I really didn't even have tiredness until the 5 & 6th week. I did have a dry mouth. Currently I have 1 saliva gland but I keep water with me and take xylimelts at bedtime. In other words, you got this, it will be over before you know it and you will be on with your life.
Take care, and good luck you will do fine.
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This past week for the first time since I was diagnosed I became angry. I had accepted my diagnosis early on and decided to be positive. I trusted my doctors and when they told me my course of treatment would spare me side some of the side effects, it was caught early, I may not need radiation, I would not need chemo etc. I believed it because it’s what I wanted to hear. I’m mad at myself for having a rosy outlook when the reality is it’s all a best guess and the docs ultimately deferred to the standard treatment. I don’t blame anyone but myself for my disappointment. I understand my care team only wants the best and to make sure the cancer is eradicated the first time. I appreciate everyone’s feedback and support on this forum and I’m starting to get my head back into the game. My simulation is scheduled for 2/28 and it’s full speed ahead after that.
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Smitty, you are just experiencing the normal emotions that go along with H&N cancer and the difficult treatment and challenges along with it. Man, this journey is filled with highs and lows, successes and shortcomings, things turning out better than expected and then sometimes not so much. It is easy to get good news and still feel down. For me this is the toughest thing I ever went through in my life, and reading other folks comments and stories over the years a common thread is that it is difficult but doable and it pushes your limits. You have a good team, they will get you through this. Below is a link to a great page from the National Cancer Institute covering the Emotions of cancer.
Take care, God Bless-Russ
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Thanks for sharing your experience. I'm stocked up on the Xylimelts, Aquaphor ointment, prescription fluoride toothpaste, Boost very high calorie, and several other things I learned from other survivors on this site to help withstand the treatments. I guess I'm as I'm as prepared as I can be. I shaved my beard for the mask fitting and now my neck dissection scar is on full display but its healing nicely. My speech pathologist is giving me a barium swallow test in 2 weeks to see how I'm doing, and I have a phone consult with a nutritionist for advice on eating during treatment. Also have hearing and blood tests (kidney function) the same day of my radiation simulation to see if I have any contraindications for the cisplatin. My sister referred my to a naturopathic doctor that works with cancer patients during treatment and I'm meeting with her before I start treatment. She synchs up with my oncologist so if there is any supplements recommended everyone is on the same page. This is a new thing for me but I'll take all the help I can get with traditional medicine and anything else.
I had a nerve test a few days ago called an EMG to determine the nerve dysfunction in my left shoulder as a result of the neck dissection. It was an interesting experience with electric shocks and needles but the results showed that most of the nerve deficits affecting my shoulder should come back in 4-6 months but I need some help with the accessory nerve that controls my trapezius muscle. Thy also discovered a cervical nerve was irritated causing my elbow pain. I start on physical therapy next week and plan to go twice a week during rads and chemo as as long as I'm able.
My attitude and mood has improved with prayer, practicing gratitude each day, and learning to meditate. I'm hoping the meditation will help when wearing the mask and I'm practicing it daily. I'm also able to go to the gym and work out 3-4 times a week and walk outside 1-2 miles. I'm no-where near where I used to be with strength and endurance but it feels good to work up a sweat. I'm jumping rope which is supposed to help with the mild lymphedema I'm experiencing. Still doing the swallowing exercises I was given at least twice a day as well.
Thanks again to everyone on this forum who has helped me, I really appreciate it.
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Well, Smitty, you are certainly one of the best-prepared people I have seen on here. Lots of supplies, beard shaved and mask fitting soon. You are working with a speech pathologist, and nutritionist, and getting blood tests to be sure all is up to par. You will have a naturopathic doctor working in coordination with your oncologist. Got your arm tested and going to be doing therapy and you are walking, jumping rope, and working on times of prayer and meditation. I have confidence in you to get through this. Just don't let your guard down because there may be some tough humps you will have to get over. Very good Smitty, you got this, and thanks for the update and for going over your preparations with us. I still have you on my prayer list.
Wishing You the Best
Take care, God Bless-Russ
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Smitty ~ I hope treatment is going well. As you have seen, the people on this forum are a great resource and truly care about helping everyone get through this. Please keep us updated and never be afraid to ask questions of your medical team or us here on the forum. Good luck and you've got this!!!
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Thank you. I had my radiation simulation and mask made this week. Not fun but got through it and I was told it was the longest I would have to be in the mask from now on.
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My RadTech's were awesome. They played music as loud as I wanted and whatever genre I wanted so it really passed the time easily. It will get hard at the end but YOU WILL MAKE IT !!!
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I have gone through radiation twice and I can fully agree with Remington's admiration for the techs. They are quite a devoted bunch of folks and deal with many difficulties each day. They deal with people in many situations with caring and compassion. During my first round of cancer radiation treatment, at one point I developed a parotid infection that swelled the side of my face and was hospitalized and given antibiotics and had to be transported for radiation treatment for a few days till I could go back home and resume from there. I will never forget the first time getting the mask back on with a semi-swollen face on one side and it made me feel like I was having trouble breathing and I said to get the mask off I can't do this, can't you make a new mask? Well, the lady that was giving me radiation said we couldn't do that because we would lose too much time and have too much of a gap between radiation till I started again. This woman worked with me and talked me through this and getting me to tolerate the situation and telling me "you have to do this" and "you can do this" and assuring me I could and they would be right there and can come in at any time and I got through the treatment that day. And once I got that in I was OK from then on and continued to the end of my 35 radiation treatments. But I owe my life to that woman who stood strong for me and was loving but firm with me and letting me know I had to proceed and gave me the confidence to proceed. She was a literal God send. I find all these techs are accommodating and supportive, exactly what we need in this time of our lives.
By the way, I stopped by and found this lady later on at the cancer center after I was recovered and thanked her personally and gave her a big hug, and let her know how special she is and letting her know how thankful I was to her for getting me through that difficult time, and I think we both had some tears welling up in our eyes but I just wanted her to know her work does mean a lot and what she does is important and matters and is life-changing for people and I was thankful and wanted her to know.
Take Care God Bless-Russ
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Day 1 tomorrow
Tomorrow is my first radiation treatment followed by the first chemo infusion the next day. My schedule will be radiation mon-fri and chemo on Tuesday and then I was told IV fluids only being pushed on Wednesdays to flush my kidneys. Five weeks of treatment will be 2456 miles round trip back and forth to the hospital. At least I’ll be in my own bed at night. I plan on driving myself as much as possible the first two weeks, with my wife helping as needed then my sister will be here week three to shuttle me back and forth. After that I’ll play it by ear based on how I’m tolerating everything and utilize Ubers and trains as needed. Whatever it takes to get this done.
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Very good Smitty, your treatment plan is all laid out and you have the drivers lined up for when you start feeling crappy. Drive yourself as you said as long as you feel up to it. I drove till I was not feeling well from the treatment and then my 2 sisters and a friend took over. Looks like you do have some distance, If I figured right it is about 98 miles a day round trip. So the treatment and traveling can be wearing on you but just go into it and gauge yourself. I know there have been people on here that drove their whole treatment and didn't need any rides, wishing the best for you. Thinking about you and praying for you.
Take Care, God Bless-Russ
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Good Luck today Smitty. Early on you should be ok but as the days and weeks add up you may feel you need a driver since the distance is 49 miles one way if may use Russ's math. I was lucky as I had about a 10 minute drive one way. I had a really good friend that took me some near the end of my tx. By the last 2 weeks I could tell a big difference and I did not receive chemo, only radiation. Don't forget the salt/baking soda rinse to keep mouth sores at bay. You are on the road to getting this done. Keep us up to date.
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Smitty,
I hope the first day of Rad's was not too stressful. I have been following along on the posts and don't have much to add except to keep a positive attitude with all this. Just one small bit of warning. As mentioned before, as treatments add up, so does the discomfort. Stay ahead of the discomfort by taking any medications offered to help you thru this. Also, we continue to "Cook" after our final treatments for several weeks. Measure recovery not in Days but in Weeks. It will seem like you take one step forward and then two backwards for a spell.
One thing to remember though, we all handle treatments and recovery differently. Hopefully you are one of those that have minimal effects and recover quickly.
My Best to You and Everyone Here
Semper Fi
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Thanks. The first radiation session went well. Now I know what to expect and I'm not in the mask too long thankfully. Saw two people "ring the bell" today so I have something to aim for. It is humbling and sad to see so many others in treatment for cancer. Its an assembly line of patients with all different types of cancer getting radiation.
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Day 2 and nerve pain from radiation
Already hit my first bump in the road. The radiation is causing severe nerve pain in my jaw and teeth. So bad drinking water hurts. I was prescribed Lyrica and Oxycodone and I hope it works. Feels like my back teeth are being drilled into. I planned on increasing pain and side effects as the weeks went by but not on the second day. I’m sitting here getting my chemo infusion and hoping I tolerate it well.
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Hey Smitty, a real bummer having a problem so early on. I hope your prescriptions work to keep it under control. Also, this may be some sort of reaction to the radiation from your body in that area and as you go forward it will diminish and go away. It could be gone by tomorrow and not come back hopefully. No matter what Smitty, hang tough and concentrate on one day, one treatment at a time till you get these in. Many on here are praying for you, rooting for you, and thinking of you as we remember our daily trips to get our radiation treatments in and we know what it is like to go through this and some of us have had our added problems besides the treatment.
I had a problem, not sure how far in but it wasn't too long, my parotid gland got infected and swelled the side of my face up I believe from the radiation and I got a fever and was hospitalized for 5 days but ended up getting through it and finishing treatments. (PS-I was transported from the hospital out to the cancer center for several days because they didn't want my treatments disrupted)
Take Care, God Bless-Russ
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Thank you Russ for the information and encouragement. I was able to eat regular food tonight by timing my Oxycodone like I did recovering from surgery. Praying it’s transitory pain like you said but I’ll adapt to whatever happens to get to the finish line. That had to be extremely tough for you getting rads when hospitalized but shows how important it is to finish.
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