Left Tonsil and Lymph Node Stg3 Recent Diagnosis
Glad I found this site. Seems to be THE place to go. I have already read dozens of stories and threads.
As each of you have already experienced, I have a lot of questions... to be more clear, I am SURE that I have questions, but most of them have not yet appeared in my mental inbox as I really do not even know what to ask at this point since everything is so new. But to begin ... at least as of yet I am not scared, worried, or in fear. I have had some friends get diagnosed with cancers in the past 2 years that were far worse, and in both cases, lethal. I consider my case to be a "lucky" one compared to thiers. At this point the biopsy was just taken so we do not know if this is HPV related or not. (Fingers crossed, I guess)
BUT ... one of my questions is about the radiation and transpo. Do you guys think I will be able to drive myself to and from these 6 weeks worth of treatments, or will I have to burden someone else to assist? I am 58 y/o and except for being a litlte overweight, in good health otherwise.
Also I have read that many of you purposefully put on weight prior to treatments. That has never been a problem with this ice cream and cake loving dude. What do y'all think? Eat what I want and as much as I want till treatment forces me away from what I love?
I appreciate this board and suspect I will be here a lot over the next few weeks and months to come.
Thank you.
Don "Beagledad"
Comments
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Glad you found us
BeagleDad,
Sorry that you are here though. To answer your question on driving yourself back and forth from Radiation Treatments, my answer would be "Yes". I had Surgery to remove the tumor on the Base of my tongue, part of my tongue was removed along with a Radical Neck Disection. After a period of about 7 weeks of healing, I started my Radiation and drove to all of them by myself. Fatigue will become an issue possibly. Each person reacts differently to the treatments. I did not have Chemo so I think in my case it was a factor on my driving to treatments alone.
I was a bit overweight when I found my cancer, the surgery caused me to use a Feeding Tube for sometime so my weight dropped to where is should have been, but Radiation took me below that point. It was a slow process, but I did gain weight back. I was 57 at the time, now 73.
Other knowledgeable people will be along soon to answer questions you may have
My Best to You and Everyone Here
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TreatmentsMarineE5 said:Glad you found us
BeagleDad,
Sorry that you are here though. To answer your question on driving yourself back and forth from Radiation Treatments, my answer would be "Yes". I had Surgery to remove the tumor on the Base of my tongue, part of my tongue was removed along with a Radical Neck Disection. After a period of about 7 weeks of healing, I started my Radiation and drove to all of them by myself. Fatigue will become an issue possibly. Each person reacts differently to the treatments. I did not have Chemo so I think in my case it was a factor on my driving to treatments alone.
I was a bit overweight when I found my cancer, the surgery caused me to use a Feeding Tube for sometime so my weight dropped to where is should have been, but Radiation took me below that point. It was a slow process, but I did gain weight back. I was 57 at the time, now 73.
Other knowledgeable people will be along soon to answer questions you may have
My Best to You and Everyone Here
Beagledad, my situation was similar to Marine E-5. Surgey ,base of tongue,neck dissection,no chemo . I to was able to drive to rad treatments without any issues but did have fatigue near the last weeks. I did have a friend take me to a few but just because he wanted to. I opted for no feeding tube kept eating soft foods throughout even though taste buds were MIA. Eat what ever you want now you will need the nourishment.
There are a lot of fine people on here that will give you some tips and help as you go through the steps to recovery.
Take care and godspeed.
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Thank you!MarineE5 said:Glad you found us
BeagleDad,
Sorry that you are here though. To answer your question on driving yourself back and forth from Radiation Treatments, my answer would be "Yes". I had Surgery to remove the tumor on the Base of my tongue, part of my tongue was removed along with a Radical Neck Disection. After a period of about 7 weeks of healing, I started my Radiation and drove to all of them by myself. Fatigue will become an issue possibly. Each person reacts differently to the treatments. I did not have Chemo so I think in my case it was a factor on my driving to treatments alone.
I was a bit overweight when I found my cancer, the surgery caused me to use a Feeding Tube for sometime so my weight dropped to where is should have been, but Radiation took me below that point. It was a slow process, but I did gain weight back. I was 57 at the time, now 73.
Other knowledgeable people will be along soon to answer questions you may have
My Best to You and Everyone Here
Thank you both. I am sure more questions to follow.
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I would agree, that you most
I would agree, that you most likely will be able to drive yourself to treatments, as long as it is close by. ( my treatment center was 2hrs away) I had Cisplatin for my chemo, and it was protocol for me to spend the night in hospital, so was able to drive myself.
My nutritionist encouraged me to eat anything and everything I could. She said we would deal with healthy choices later! I had a rough time ( 3 yrs ago) with lots of lasting issues, my husband, same treatment one year ago, came through with flying colors and no side effects. I know both sides, patient/ caregiver, hard time/ easy time. Don't hesitate to reach out.
Good luck with your journey. This is a great place for advice, help, or just a friendly ear. I am happy you found us.
Take care
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No problem driving
So sorry for what you will be going through. This is an excellent place to get many answers from wonderful people. You should have no problem driving. Keep your weight up, because once your taste buds vanish, was week 4 for me, then the fun will start. You can do this though. Just keep a strong mindset and you will get through it. Take Care
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driving depends
Driving will depend on whether or not you will need any medication prior to your radiation treatments. I am extremely claustophobic and had to take ativan before each treatment. I was not able to drive because of that. If I was not on ativan I would of been able to drive no problem, except for the 3 times I had my chemo treatments. As far as eating goes. Before treatment I was also slightly overweight. I had about 4 weeks before treatment started so I ate ate and ate somemore. Gained about 20 pounds. Had no feeding tube during treatment and lost about 30 pounds. Eat all your favorite foods now and enjoy. I lost my taste about 3 weeks into treatment. That was probably one of the hardest things for me to deal with. Makes it very difficult to eat solid food. Plan on alot of protein shakes. I was one of the lucky ones and got most of my taste back in about 1 year. I'm currently 2 years out from treatment and have 100 percent of my taste and saliva back. Your very fortunate to have found this site before starting your treatment. I learned more from my fellow cancer warriors than from all the doctors and support staff. Ask lots of questions about anything and everything. We are all in this together. Take care and God Bless.
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Counterintuitivericksmithgolfer said:driving depends
Driving will depend on whether or not you will need any medication prior to your radiation treatments. I am extremely claustophobic and had to take ativan before each treatment. I was not able to drive because of that. If I was not on ativan I would of been able to drive no problem, except for the 3 times I had my chemo treatments. As far as eating goes. Before treatment I was also slightly overweight. I had about 4 weeks before treatment started so I ate ate and ate somemore. Gained about 20 pounds. Had no feeding tube during treatment and lost about 30 pounds. Eat all your favorite foods now and enjoy. I lost my taste about 3 weeks into treatment. That was probably one of the hardest things for me to deal with. Makes it very difficult to eat solid food. Plan on alot of protein shakes. I was one of the lucky ones and got most of my taste back in about 1 year. I'm currently 2 years out from treatment and have 100 percent of my taste and saliva back. Your very fortunate to have found this site before starting your treatment. I learned more from my fellow cancer warriors than from all the doctors and support staff. Ask lots of questions about anything and everything. We are all in this together. Take care and God Bless.
LOL..this is SO counterintuitive .... all my adult life I have "struggled" with my weight ..up and down like most that do. Size 44 pants, down to 38s, up to 40s, etc. Glad I did not throw away my bigger clothes.
Now I am being told to eat and eat and eat ... luckily I deliver pizzas (at least for as long as I still can) so I have access to PLENTY of weight-gaining foods. My brain simply does not yet compute this idea of eating as much as I have always wanted to.
And wouldn't you know ... now with all this bad news, I have lost my appetite - not to mention doing ANYTHING but wallowing in my own self pity and reading every comment and thread here I can that is "close to" my issue.
I imagine y'all have gone through this same bubble. I feel as though I can freely express these feelings and thoughts and emotions here.
Thank you.
Don Carly's dad
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radiation
Hi Don, i too had early stage right tonsil and one lymph node involvement. I only had radiation (proton) treatment. 6 weeks..5 days per week. I drove 3 hours (one way) to Mayo clinic in Rochester MN. i had no issues with the drive..actually enjoyed it. I also continued to work the entire 6 weeks. my pain level never really reached over a 5 or 6. I did need to use 'majic Mouthwash to help with eating (numbed my throat for about 10 minutes) the last week and 2 weeks after treatment. I only lost about 50% of my tastes during treatment. they only radiated my right side ...one of the benefits of proton rads. 2 months post treatment all was back to normal. slight dry mouth still at night when i sleep. I did lose 40 pounds but need to. LOL. I'm just over 2 years post treatment..all is back to normal although occassionally i have a bit of neuropothy on my neck/right side. and some slight stiffness. Hoping for the best for you. Very treatable and highly curable. Believe in your treatment team once you determine the plan and have a good/ positive attitude. take care!
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Protonskidog said:radiation
Hi Don, i too had early stage right tonsil and one lymph node involvement. I only had radiation (proton) treatment. 6 weeks..5 days per week. I drove 3 hours (one way) to Mayo clinic in Rochester MN. i had no issues with the drive..actually enjoyed it. I also continued to work the entire 6 weeks. my pain level never really reached over a 5 or 6. I did need to use 'majic Mouthwash to help with eating (numbed my throat for about 10 minutes) the last week and 2 weeks after treatment. I only lost about 50% of my tastes during treatment. they only radiated my right side ...one of the benefits of proton rads. 2 months post treatment all was back to normal. slight dry mouth still at night when i sleep. I did lose 40 pounds but need to. LOL. I'm just over 2 years post treatment..all is back to normal although occassionally i have a bit of neuropothy on my neck/right side. and some slight stiffness. Hoping for the best for you. Very treatable and highly curable. Believe in your treatment team once you determine the plan and have a good/ positive attitude. take care!
Great to read, thank you! Mine has hit my lymph node so Dr claimed it was st3..although that is only preliminary. Have an appt Monday with a tonsil cancer specialist to help figure out treatment. My drive will only be 20 minutes, so that helps.
I have read a lot of (older) posts about insurance not covering the proton treatment...did you experience that, or was yours covered?
Man, if I could continue to work..that would be great. Spoke with da boss last night and she is fine with me reducing hours and/or # of days as needed (Thankfully they REALLY like me there) and even changing from driver duties to inside restaurant "lighter" duty. (Although the tips are where I make my serious dough, I'll take what my body anbd boss let me have) My work there is such a great outlet for me and it really bugs me to have to leave it.
Do you attribute your "lower" pain and ability to stay working to the TYPE of treatment (proton) or other factors?
It was very encourasging to read this, thank you.
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I encourageBeagleDad said:Proton
Great to read, thank you! Mine has hit my lymph node so Dr claimed it was st3..although that is only preliminary. Have an appt Monday with a tonsil cancer specialist to help figure out treatment. My drive will only be 20 minutes, so that helps.
I have read a lot of (older) posts about insurance not covering the proton treatment...did you experience that, or was yours covered?
Man, if I could continue to work..that would be great. Spoke with da boss last night and she is fine with me reducing hours and/or # of days as needed (Thankfully they REALLY like me there) and even changing from driver duties to inside restaurant "lighter" duty. (Although the tips are where I make my serious dough, I'll take what my body anbd boss let me have) My work there is such a great outlet for me and it really bugs me to have to leave it.
Do you attribute your "lower" pain and ability to stay working to the TYPE of treatment (proton) or other factors?
It was very encourasging to read this, thank you.
you to read my posts..especially my first one. I go into great detail about my journey including overcoming initial insurance rejection of Proton therapy. Proton therapy benefits include, minimal colateral damage to important taste and swollow tissue. I also didnt need to have extensive dental work done....which was another huge benefit. Just search by my username: Skidog ....and it should pull up my posts.
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Will doskidog said:I encourage
you to read my posts..especially my first one. I go into great detail about my journey including overcoming initial insurance rejection of Proton therapy. Proton therapy benefits include, minimal colateral damage to important taste and swollow tissue. I also didnt need to have extensive dental work done....which was another huge benefit. Just search by my username: Skidog ....and it should pull up my posts.
Will do, thank you. I am hoping that the insurance companies have added this to standard treatment now. Sadly, I cannot get insurance until Open Enrollement(what a stupid idea) ..and that is still 2 weeks away. Thank you.
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Pain? What pain?
I appreciate you folks taking time to help me through my questions.
OK..I have read almsot every one of you had to deal with significant pain. But none of you have actually told us WHERE is this pain of which you so often speak? I have heard about patches and pills and liquified pain pills and the like ....and make NO MISTAKE I am NOT in the least doubting anything you experienced folks have to say...nor in ANY WAY trying to think that I will tolerate it any better than any of y'all.
Is this pain primarily the super sore throat...like a weeks-long strep throat? Is this in the jaw, or bone, or some other plpace? I am just trying to psyche myself up (like an athlete playing out the game before he gets into uniform) ... and I know you guys probably do not want to scare me out of my pants beforhand. But are any of you willing to describe WHERE you experienced themsot pain that caused you to say "my pain was a 5 or 8 at the worst" or "I had a lot of pain but the patches helped", etc.
Thank you so much.Don-Beagledad
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my painBeagleDad said:Pain? What pain?
I appreciate you folks taking time to help me through my questions.
OK..I have read almsot every one of you had to deal with significant pain. But none of you have actually told us WHERE is this pain of which you so often speak? I have heard about patches and pills and liquified pain pills and the like ....and make NO MISTAKE I am NOT in the least doubting anything you experienced folks have to say...nor in ANY WAY trying to think that I will tolerate it any better than any of y'all.
Is this pain primarily the super sore throat...like a weeks-long strep throat? Is this in the jaw, or bone, or some other plpace? I am just trying to psyche myself up (like an athlete playing out the game before he gets into uniform) ... and I know you guys probably do not want to scare me out of my pants beforhand. But are any of you willing to describe WHERE you experienced themsot pain that caused you to say "my pain was a 5 or 8 at the worst" or "I had a lot of pain but the patches helped", etc.
Thank you so much.Don-Beagledad
was mostly on the outside of my neck (skin) on the right side where i was radiated. Had to use lots of silver sulfadiazie cream to soothe the burns on my neck from week 5 thru 2 weeks post treatment. My throat was sore from week 4 thru 1 week post treatment. about a 5 level pain but tolerable. Used magic mouthwash when I needed to eat. MM would numb the throat for about 10 minutes and allow me to eat my scramb;led eggs and yogurt and protein shakes. You will definitely feel pain but lots of ways to manage it.
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Hard to sayBeagleDad said:Pain? What pain?
I appreciate you folks taking time to help me through my questions.
OK..I have read almsot every one of you had to deal with significant pain. But none of you have actually told us WHERE is this pain of which you so often speak? I have heard about patches and pills and liquified pain pills and the like ....and make NO MISTAKE I am NOT in the least doubting anything you experienced folks have to say...nor in ANY WAY trying to think that I will tolerate it any better than any of y'all.
Is this pain primarily the super sore throat...like a weeks-long strep throat? Is this in the jaw, or bone, or some other plpace? I am just trying to psyche myself up (like an athlete playing out the game before he gets into uniform) ... and I know you guys probably do not want to scare me out of my pants beforhand. But are any of you willing to describe WHERE you experienced themsot pain that caused you to say "my pain was a 5 or 8 at the worst" or "I had a lot of pain but the patches helped", etc.
Thank you so much.Don-Beagledad
Don - I will be brief(er). Pain is subjective. The 1-10 scale is useless if you don't know what a 10 is. I have a high threshold. I absolutely did hurt, but I never took meds. "Magic Mouthwash" was my go-to when I had-to. I will spare you the comparisons, but my pain got to *maybe* a three for a very, very short time right at the end. I was lucky not to experience pain about a 1 until right at the very, very end.
The strep-throat part I will call a "1" and that lasted maybe two weeks?? Maybe / sort-of. There is a particular phlegm that's just...a challenge. When/if it happens to you remember that like all of this, it will pass.
Where did it hurt? My cancer was on the right tonsil and I had most of the radiation to that area (but they blasted both sides). The soft pallet got very "raw." ...but it hurt in all the places a sore throat hurts and swallowing was no fun (I got a suction machine at one point so I didn't *have* to swallow; not everyone needs that). <please remember that *I,* apparently, am wimpy> Do your rinses and tooth care. Super soft toothbrushes. Go see your dentist.
But, I'm going to say this again - it is going to be what it is for you and it is temporary. Women have multiple children. <proving that they are tough and that pain is forgettable>
I am jealous of others who got right back to their routines. It took me a year. The best advice I received (from right here) is to follow all of my healthcare team's advice and shorten my recovery time from a year to a mere 12 months.
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Late to the party...
I didn't read all of the comments above so I'm not sure if you are getting just radiation or radiation and chemo. It looks like in your post you didn't know if it was HPV related. Assuming you AREN'T getting chemo I wouldn't worry too much about putting on a lot of weight before hand. You said you're already a little overweight so you might end up losing a little and end up feeling pretty good about yourself when it's all said and done.
If you end up getting chemo AND radiation then I'd suggest trying to gain a little in preparation. Radiation alone isn't too big a deal as other suggest. You'll be tired and toward the end you'll have a sore throat all the time. Eating soft foods isn't usually too big a deal.
Chemo plus radiation is a lot more disruptive. Many folks end up getting feeding tubes because it's just to painful to swallow.
But again, some folks breeze through and others really struggle. It will depend.
Good luck.
Brandon
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Also...
Again, depending on you... your ability to continue working and such will just depend. I worked all through my treatments. I think I missed only like 10 days total through 2 surgeries and all of radiation. Figured I could sit around and feel **** or stay busy. My pain due to radiation never really was worse than razor burn on the outside of my neck and a sore throat. But I had radiation only...no chemo.
Jury is out regarding proton vs. regular old IMRT radiation. Proton is super expensive and is supposed to have better accuracy but I've seen folks who had it have the same types of issues as everyone else. So, who knows. From an efficacy perspective both do a great job at killing the cancer cells however.
Brandon
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I appreciate your responsejohnsonbl said:Also...
Again, depending on you... your ability to continue working and such will just depend. I worked all through my treatments. I think I missed only like 10 days total through 2 surgeries and all of radiation. Figured I could sit around and feel **** or stay busy. My pain due to radiation never really was worse than razor burn on the outside of my neck and a sore throat. But I had radiation only...no chemo.
Jury is out regarding proton vs. regular old IMRT radiation. Proton is super expensive and is supposed to have better accuracy but I've seen folks who had it have the same types of issues as everyone else. So, who knows. From an efficacy perspective both do a great job at killing the cancer cells however.
Brandon
I'll find out this Monday after the PET scan. Would be AWESOME to not have the chemo. BMI charts have me roughly 40# overweight..that being said..I am in, overall, "good" health. I can knock out 30-40 miles on my bicycle with ease, and work at night delivering pizza...which is a far more physical job than one might think. I have already spoken with my boss and they wil gladly reduce my hours ifneeded, switch me to doing inside jobs that are less physcially demanding, etc. (But the $$ is in the tips!!)
I'll play he hand that is dealt me ..I am just hoping for a generous river card.
Thank you for your response; I appreciate your time. And GOOD ON YA for not having as difficult a time as many.... gives me hope!Don
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BD,
I think the wise course of action would be to get rides to the first few treatments, until you find out how you react.
You have a great attitude, and that means a LOT! Don't be afraid to eat all of your favorites, now - and LOTS of them. You may lose your sense of taste for a while.
I wish you the best possible outcome!
mg
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