52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
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First week of Rads and Chemo completed
I made it through week 1 and thankfully have the weekend to recover. So far I have mild nausea from the chemo, some changes in taste, dry mouth, a “sizzling” feeling in my mouth, slight sore throat, and increased neck tightness on my left (treated) side. I’m still eating solid food so far by timing my pain meds before meals. Swallowing is a little harder for sure. Glad to be 20% done.
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Smitty thanks for the update and congrats on getting your first week in. The first treatment is a step to get done and feel confident in the treatments and the next step is getting the first week in and you now have done both. I see you are getting some mild effects from the treatment and hopefully, you will not see them escalate to a large extent. But you have been on this site and done the research and have an idea of the possible effects and how to handle them if they occur. Also, remember there are folks right here on this forum who have been through these treatments that will help and support you through this no matter what you encounter. Glad for you that you are eating and staying ahead of any pain. 20% done Ye-Hah.
Wishing You the Best
Take care, God Bless-Russ
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Hi Smitty, sounds like the same diagnosis I had. Good plan finding out as much as you can from your med team and the folks here who have gone or are going through treatments. Every thing went so fast for me from diagnosis to surgery Rad/Chemo I hadn't been smart enough to learn all about the side effects ahead of time. But as most of us say stay as positive as you can and try and be grateful for even the smallest thing, least that's what I try for. Good luck to you and God bless Lynn
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Second week of Rads and Chemo completed
Made it through week 2. Still driving myself each day except the chemo infusion days. My taste buds are starting to go away and the radiation field on my neck is more irritated. Also a little more nausea but controlled with meds. Still able to eat and swallow ok and no sign of mucositis yet so thank goodness for that. I was also able to make it to my PT sessions this week and my left shoulder (damaged from neck dissection) mobility is slowly improving. Fatigue sets in during late afternoon and evening but for the most part I can function normally mornings and early afternoon sometimes getting in a walk around the neighborhood. Im going to take this weekend to relax as much as possible and prepare for next week.
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OK Smitty, this is when things start getting real. Hopefully you're still doing the oral and lymph therapies recommended because I truly believe it'll help with the swallowing down the road. I drove myself until the Dr wrote me a script for oxy and then it just seemed more responsible to have my wife drive me. Power greens, frozen chopped mango and powdered vanilla protein for lunch every day helped keep some weight on. Hang in there.
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Smitty, thanks again for the weekly update. It looks like things are progressing as they do for someone receiving the type of treatment you are getting. Mild things happening right now and hopefully in the long run through this that you have a more mild reaction overall than normally occurs. That is my wish for you. You are doing correctly, stay active and eating as long as you can and hopefully it will go the duration of this treatment.
Prayers you way
Take care, God Bless-Russ
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Week 3 completed - difficult
Fatigue is setting in more often now after treatment. Incredibly dry mouth and starting to get very thick “wallpaper paste” spit. I’m unable to eat without pre-dosing pain meds and taste buds are fading even more. I have more nausea after chemo as well. My super power must be my appetite because I’ve been holding my weight so far. I know I only have 2 weeks left- 10 radiation and 2 chemo but the reality is setting in that the end of treatment is just the beginning. My treatment team is telling me my side effects will mostly subside 6-8 weeks after treatment ends but what I’m reading on this site is everyone is different and don’t be surprised if things take years or don’t come back at all. As soon as this poisoning is over I’m going 100% full speed into recovery mode and taking my life back.
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Recovery is anything but linear and it really is important to rest that first month. I weighed more on my last day of treatment than I do now over 2 months post radiation. The thick saliva goes away and is replaced with dry mouth xylimelts (spelling)help a little. I'm using salivea brand toothpaste because sensodyne became too minty to handle. Hang in there
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Thanks for the update, Smitty. I have been thinking about you in treatment and how you were doing. You are correct about the end of treatment being not necessarily the end but the beginning of recovery and being difficult. I think your treatment with radiation still is active in your body for about 2 weeks then your recovery actually starts. Yes, 6-8 weeks is the overall estimation of recovery in the worst of it but then it is a long slow process to finish recovery. You will be surprised how fast it goes and how you start feeling better as time goes on. As far as taking years for recovery I think most folks take a year total on average and that includes treatment itself. You are doing well Smitty keep on keepin on. For thick saliva rinse, rinse, rinse with the salt baking soda mixture, and stay ahead of it as well as any pain stay ahead of it. Xylimelts are good for dry mouth, I use them and many do on here. Also, another brand of toothpaste that is recommended by dentists and health care professionals that are involved with head and neck cancer folks is called Squigle and it has Xylitol in it and fluoride.
Again Thanks for the update Smitty, you are in my prayers.
Wishing You the Best
Take Care, God Bless-Russ
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Week 4 done - one more week to go
Five more radiation treatments and one more round of chemo next week then I can ring the bell! This weeks toll has been more pain after radiation (I was prescribed Aquaphor ointment with lidocaine) and my neck dissection scar began weeping fluid and blood in one spot - the same spot that had been slow to heal from surgery. The radiation field overall is very red and irritated but lotions and potions seems to help. On the chemo side one of the drugs given to reduce nausea irritated my vein and I had to be stuck again in the other arm to deliver the Cisplatin. Definitely a spike in the overall nausea after chemo as well but being controlled with meds. Blood counts are lower but still in the lower end of normal, and I only dropped a few pounds. Dry mouth persists (thankfully no mouth sores) as well as vey little taste. Eating is a chore but I'm approaching it as being medicine needed to heal and tolerate the treatment rather than something I can enjoy. I am truly in awe of the people that had to endure 7 weeks of treatment and knowing that can be done has helped me get through my first 4 weeks. All the tips and tricks given by those that went before me on this board have helped with symptoms and I continue to use them. Xylimelts are a lifesaver and enable me to sleep for long periods at night without getting up for water.
God bless everyone and Happy Easter.
Smitty
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My Squiggle toothpaste came in the mail today. Thanks for the tip!
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Smitty, thanks for the weekly update. It is obvious you are getting the normal results to deal with from radiation and chemo but you are meeting the challenge and faring very well in this storm. Way to go Smitty. So eating is a chore, I know how you feel it can be quite difficult but I really like your concept of treating food like medicine needed to heal. I never thought of it that way but I think that is a very good way to approach it and a good idea for others to consider going through this treatment. I hope you like the Squigle Smitty.
My best to you and have a happy and Blessed Easter.
Take Care, God Bless-Russ
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Thank you. My wife made meatloaf and mashed potatoes and I smothered it with gravy and slowly ate the whole plate. Just having some texture other than a smoothie was good even though the taste was not there. Strangely I did taste some green beans pretty well so I’ll keep experimenting with different foods.
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Smitty,
I am happy to read that you were able to eat some meatloaf and mashed potatoes, smothered with gravy. One of my favorite meals. I have been following your journey and can't wait to hear that Bell Ring when you are done.
One survivor on this site years ago made the suggestion that we should go to a Buffet and sample the food there so we don't spend money on meals that we may not be able to tolerate. He said he would do it every couple of months.
Take care Marine, you are almost done with this Crucible. Semper Fi
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Treatment Completed!
I completed my chemoradiation treatments last week and sure will not miss the daily visits to the hospital. So far so good - my blood counts are in the low range still but trending upward, nausea is subsiding and I'm feeling a little better each day. Loss of taste and dry mouth is a bummer and keeping my weight up is going to be a daily challenge. I'm using a phone app that counts calories to keep me on track. The first few days I was very fatigued but its getting better. Still a ways to go to get my strength back as I did some gardening yesterday and had to rest quite often. My neck is pretty "sunburned" from the radiation but was told it will heal in a few weeks. Its also getting tighter so I need to keep up on stretching it. I've been doing the daily swallowing exercises to keep things moving down the pipe and walking the neighborhood to get the blood flowing. I'm on track to return to work in a few weeks with some travel restrictions as I wean off the pain meds. Overall I'm staying positive and trying to be patient as I return to the "new normal" everyone speaks of. My next scan is in July and I'm going to just live life until then as I'm confident in my care team and God willing won't have to deal with this again.
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Congrats Smitty! I think at 3 months out i'm starting to adjust to my 'new normal' There are still times the tightness in my neck distracts me and dinner is a hassle to eat. saliva and taste are much slower to return from radiation than it was from surgery so weight isn't easy to get back. I bought an EMST 150 on the recommendation of the swallow therapist. Otherwise I got nothing else to share. I'm glad I don't have to go back to work.
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