52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
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Thanks. Glad to hear you are coping well. I looked up the EMST 150 device. It’s reasonably priced. I’ll check with my speech therapist if it’s something I can benefit from.
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Outstanding News Smitty,
Not an easy road to travel but you made it to the finish line with treatments. Now the rough part, the first few weeks of recovery where the treatments actually kick in at full accumulative force. "Cooking"..... One thing that i would like to mention is don't forget to apply some type of lotion to your neck while it is feeling tight. It will help when you are doing your stretching exercises. I have been following along and you are doing everything you can to do this only once.
My Best to You and Everyone Here
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Thank you. Yes, my neck is getting redder and more irritated each day. I'm slathering it two times a day and thankfully they gave me a lidocaine gel to calm down the pain.
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So glad you are through with the treatments Smitty congratulations. Even though you are feeling bad you are feeling good about completion. Now to heal from the treatments. Prayers continue for quick healing and a good recovery.
Again Congratulations--
Take Care, God Bless-Russ
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Hopefully you are already seeing the redness subside a bit. I know I was miserable for the first week after my final radiation treatment and then I began to feel a tad better and each day was a small improvement. I tried everything to get my saliva to come back sooner and a recommendation here was lemonade. Once I was able to swallow without extreme pain (about 10 days) my wife made me fresh squeezed lemonade and I would drink a glass of that each day. I don't know if it worked but it was worth a shot.
Also, we went out to dinner to Texas Roadhouse and I couldn't taste my food. I didn't like mushrooms prior but I tried different foods from my wife's plate just to see and oddly enough they almost had a "beefy" taste so I ordered a side of mushrooms. Hopefully something starts shining through for you soon!
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Hey Remington,
Yes, the redness is fading. I'm 12 days out from the last radiation treatment and had my first follow up this past Monday. I was told it will continue to get better. My swallowing is pretty good. I have to cut everything small and can only chew on the non affected side without pain but I get the job done. I'll give the lemonade a try. I am able to slightly taste lemon merengue pie, just the first few bites have a mild lemon flavor then it fades. My plan is just to keep eating everything that does not taste bad. I had eggs benedict at a diner this morning and I could taste the hollandaise sauce. The taste was not as "intense" as I remember but I'll take what I can get. Bread tastes like paper so usually soak it, for example I am eating baked beans on toast a lot. I got advice to suck on zinc lozenges starting next week which has helped some folks regain taste sooner. Dry mouth is still bad but I have water with me at all time to sip.
Today I felt fairly normal for the first time in a while. I went for a long walk, spent 25 min at the gym just going through the motions lifting very light weights, and am preparing to go back to work Monday. I'm totally weaned off all opioids and just taking Lyrica for nerve pain in my neck and jaw. I'm still not at 100% energy level (maybe 50-60%) but like everyone has been saying it gets a little better each day. I have an appointment scheduled for a nerve doc to help with my shoulder that was messed up from the neck dissection, and another to see a PT person for lymphedema therapy for my neck. Also a hearing test to check if I lost anything since before the chemo. I did experience some ringing in my ears and sensitivity to loud noises but that is starting to go away now too. One day at a time until my July PET scan!
Smitty
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It sounds like it is actually going very well for you in my uneducated mind. I was fortunate and my shoulder made it through well. My full energy really didn't come back for almost a year and I'm in decent shape, walk 10k steps a day and play recreational sports. My saliva took 4 months or so to come back to a decent level. Started to come a little at the 30-45 day mark and then slowly improved over the next few months. I don't need a humidifier to sleep but it certainly helps me to this day.
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A birthday, some milestones, and returning to "normal"
Today marks my 53 year on the earth, just shy of 6 months since I was diagnosed, and a little over a month since my treatment ended. I had several one month post-treatment follow up appointments scheduled for today but the President decided to attend his granddaughter's college graduation across the street from the hospital I needed to go to, so I rescheduled to avoid the traffic nightmare. So far my taste buds are still slowly waking up , I can eat most anything with small bites and a lot of liquid to wash it down, and I'm off almost all medications. In fact I gained back 20 of the 30lbs I lost and have to be careful not to regain the extra spare-tire of fat I had before. I've returned to exercising in the gym, I'm back to work, and started graduate school again today. My Wife thinks I'm going back into my normal activities too fast but I think I am doing just fine, and listen to my body when it tells me to slow down. I'll be in the woods this weekend hunting turkey and I'm shopping for a new bicycle to ramp up my fitness. If this monster decides to return I want to be in tip-top shape to fight it.
Swallowing is not 100% but I'll take what I have and continue to perform the swallowing exercises I was shown during treatment. Dry mouth is a constant and a water bottle is always at my side. My neck has mostly healed but is still tight and sore. I developed two superficial blood clots in my left forearm veins due to damage done by the chemo infusion but they are not the dangerous kind and I was told they will resolve on their own. I just need to take it easy at the gym. I'm grateful to be in good shape and good spirits and just living life again. So far so good. Next PET scan is in July and I'm not going to obsess about it and just enjoy one day at a time!
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Hello, Smitty.
I must say you are recovering and progressing amazingly well as compared to many who have gone through the difficult treatment. Eating is a little slow but certainly that is normal for this situation. My goodness you are back to work, back in the gym, and back to school wow that is great. Also, you are going hunting again and getting into cycling with a new bike, good for you. You must be feeling pretty good. Some things need more time to come around like swallowing, and saliva, they both could improve. Certainly, I think your swallowing definitely will continue to improve. And you still have the possibility of saliva improving.
Like you say it sure is good to get back to living life again. How well I remember that feeling.
My hats off to you sir-congrats-congrats, congrats, and prayers for continued improvement in all things.
Take Care, God Bless-Russ
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Thank you Russ. I’m so grateful to be on the mend. You were a big help to me on this journey.
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Lymphedema increasing but not too hard to manage
A quick update on my continued recovery: I’m noticing increasing lymphedema in my neck. Now that I’m off all meds including lyrica maybe I’m just noticing it more but it seems to be increasing. I volunteered for a nursing school study on the effects of therapy in reducing it, and go for my initial baseline measurements next week. Then I’ll be referred to a specialist in lymphedema therapy. Until then I’m doing self massage and stretching techniques that I found in this forum.
On a positive note my taste buds are waking up more and more and it’s motivating but also dangerous as I don’t want to put on too much more extra weight.
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Thanks for the update, Smitty. So glad you are progressing and off all meds. Lymphedema is a common side effect of this treatment. Wow, you are lucky to get into that nursing school study. I'll bet you get the best of care in a study like that. And you will be referred to a specialist, great. The taste is coming back, what a blessing, just watch your calories you will be OK.
Still praying for you and Wishing You the Best
Take Care, God Bless-Russ
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Lymphedema therapy is helping
A little update just shy of 3 months after treatment ended. I had my 3rd of 8 scheduled lymphedema therapy sessions today and its really helping the swelling in my neck. It’s a 60 min massage specialized with techniques to drain the excess lymph fluid. Today they added Kinesiotape to my neck to gently help with lymph drainage. I also have exercises to do daily at home. My morning routine is getting longer -physical therapy exercises for my shoulder, speech and swallowing exercises, and now lymphedema exercises. I’m thankful for all the care providers that give me these tools to help me recover!. Next stage in this journey is first post treatment PET scan on 7/19.
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Smitty, I am glad the lymphedema treatment are making a difference. You have a lot going on in recovery with swallowing and exercises but it will be well worth it as you head to full recovery from treatment. Prayers for an absolutely clear PET scan,
Take Care, God Bless-Russ
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Post-treatment follow up good to go and PET scan all clear
I had a few appointments with my care team and they all went well. Last week my chemo oncologist told me I'm no longer her patient. The chemo did not damage my kidneys, hearing is still ok, and all my blood tests are good and/or trending up to normal. I still have a little bit of "chemo brain" fog but much better than 3 months ago. Next the speech therapist told me to restart daily swallowing exercises which I stopped because radiation is the gift that keeps on giving, and my function could get worse as time goes by. Today my surgeon gave me the all-clear on my PET scan with no evidence of recurrence or spread. Next follow ups are with my radiologist and dentist in October.
My lingering side effects are moderate neck lymphedema, slight dry mouth (getting better slowly), some taste changes, and still having trouble swallowing bread without dipping it in something. I did discover potato rolls are easier to handle so that what I'm using for hamburgers and hotdogs loaded with condiments to make them softer. My left shoulder function is improving and other than doing pullups and shoulder presses I resumed most of my activities and exercises.
I'm very grateful and blessed to be in this position 14 weeks after my last radiation treatment.
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Congrats Smitty on your ALL clear!
Sounds like you are progressing nicely. As far the Lymphedema my oncologist told me only time would help that along with massages and other things. As far as bread I have learned to drink in between bites of certain foods as I basically have only 1 saliva gland, the other 1 got Fried. Thanks for the heads up on the potato rolls. Continue healing and progressing. Take care.
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Hi Smitty,
I have been following your story/treatment since my husband was recently diagnosed with similar cancer. Our doctors are saying no surgery (not even neck dissection) as it's Stage I. Saying we'll get a "cure" after just radiation and chemo treatment (7 weeks rads and either 3 or 7 Cisplatin based on dosage and we choose).
Just curious as to what "type" of radiation you had (for us our only choice is VMAT, not Proton). Where you were treated did they even have Proton radiation? So far, where we are, not many even have it yet. Our hospital will be getting it in 2025.
Thanks for answering and so glad you got through this and posted your journey for the rest of us.
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