tonsil cancer
I am 48 and had night sweats for the last year and back in June had a lymph node swell up in the right side of my neck so my primary Dr. sent me to a surgeon and he did surgical biopsy of the lymph node and I was told it was cancer then refered to a nose, Ear, throat specialist who scoped the area and seen the tumor on the lingual tonsil. I just had a PET scan this past Saturday and at least got great news that it has not spread anywhere else and this looks to be the primary. I go to the radiation Dr. Wednesday to be fitted and planned for 6 to 7 weeks of radiation. They also said chemo can be used aggressively in 3 doses if it can be tolerated or once a week for 6 to 7 weeks in a lower dose. Any suggestions or what to expect.
Comments
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We are entering this storm together
Wildman ... I was just diagnosed last week, and have PET scan scheduled this coming Monday. Looks like you and me might be going through all of this on a similar timeline. Mine is HPV16 positive and in left tonsil with swelling in nearby lymph node. Will have more info Monday. My Dr. wiill be making all treatment recomendations Monday as well. Is yours hpv+ as well?
I am sure you are about as excited to have this as I am, but I gotta tell you, I am pleased (is that a bad word here?) to have someone to go through it with me like yourself. I hope you find sharing this experience with another helpful.
I have been all over the superthread, and found several folks here that have gone through all this and are living good lives. Overall, it sounds pretty icky, painful, and tiring .. but as compared to some folks with the cancer diagnosis, quite promising.
I wonder how my skin will react, how I will deal with the dry throat, new oral hygiene regimines, eating or consuming calories of any sort. At this point, I do not *feel* as though I will have some of the issues I have read about regarding the mask as I have no claustorohobic tendencies..in fact, I kinda prefer operating out of small "cockpit" like offices. Of course, this is only conjecture; no telling what will or will not bother me as I ride out this storm.
For me, my biggest concern (at least now) is my ability to continue to work. Some have said they worked throughout their treatment..others have said it would have been impossible. I am hoping and praying that I will be able to work as that not only helps me finaincially, but also with the joy of being around my coworkers and contributing to the success of the operation I get moral boosts. Ya know, something to look forward to besides the ICK.
Sorry for typos as both my little fingers are arthritic (years of being a computer tech) so please bear with me.
I am a tad older than you ...58 here...I'll be "celebrating" my 59th birthday on treatment. One for the books, eh? But I do not want to complain ..many others have so much more to complain about legitimately. But that is just me ...if complaining helps you, by all means, I'll be glad to hear it.
I hope that we can be moral and other support for each other as we board this train headed for the unknown. I have not yet figured out how to PM around here and I think they remvoe email addresses if I leave them. But if you are on FB, feel free to look up "Hugh Akston" ... my profile pic is me standing in a black shirt with the letter Q on it. From Bella Vista,Arkansas.
Good luck, sir. Let's do this and lets NOT let the turkeys get us down!
Don - Beagledad
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Welcome TO The Club
Nobody joins by choice and welcome to the forum. I would suggest you check out the listing at the top of the page first it is called The Superthread-loads of information in there. On what to expect I would say the first weeks of radiation and chemo are not difficult but as they add up it can make you very tired. The chemo also makes some folks sick or nauseous but there are many modern meds to help control it. I guess when you said fitted you meant fitted for a mask to hold your head still for rads. Depending on the area and how hard they are radiating it they may suggest you get a feeding tube in case you have trouble swallowing later on. Also unless you are carrying a lot of extra weight right now then you should eat lots of everything you like now and put on some pounds as you may need the reserves later if you have trouble eating a lot. If you are like most of us you will get to a point where food is bland and has no taste at all and at that point if you can still swallow you will be just forcing food to maintain your weight. If you make smoothies that is a good item to get down.
Once you finish your treatments your body is pretty beat up and tired and they say for a couple of weeks you are still cookin from the radiation before it subsides completely. At this point for me, I slept a lot and was tired but still tried to move around some each day exercise or walking if possible. You have a tough day just sleep if you need it. This treatment can be a tough haul so just prepare yourselve's as best you can and stay close to your cancer team they are there for you so don't hesitate to call them with any questions or problems. I could call even at night as they had someone on call to answer. I had a nurse navigator assigned to me and my case do you have a navigator or something similar? That's all I can think of at the moment but as you progress post on the forum any questions you have there are many who have gone through your situation or similar. If you want private message missusS as her husband recently finished treatment and he is about 10 weeks out. She would have some first hand info and advice-Take Care-God Bless-Russ
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same here beagledad hpv16BeagleDad said:We are entering this storm together
Wildman ... I was just diagnosed last week, and have PET scan scheduled this coming Monday. Looks like you and me might be going through all of this on a similar timeline. Mine is HPV16 positive and in left tonsil with swelling in nearby lymph node. Will have more info Monday. My Dr. wiill be making all treatment recomendations Monday as well. Is yours hpv+ as well?
I am sure you are about as excited to have this as I am, but I gotta tell you, I am pleased (is that a bad word here?) to have someone to go through it with me like yourself. I hope you find sharing this experience with another helpful.
I have been all over the superthread, and found several folks here that have gone through all this and are living good lives. Overall, it sounds pretty icky, painful, and tiring .. but as compared to some folks with the cancer diagnosis, quite promising.
I wonder how my skin will react, how I will deal with the dry throat, new oral hygiene regimines, eating or consuming calories of any sort. At this point, I do not *feel* as though I will have some of the issues I have read about regarding the mask as I have no claustorohobic tendencies..in fact, I kinda prefer operating out of small "cockpit" like offices. Of course, this is only conjecture; no telling what will or will not bother me as I ride out this storm.
For me, my biggest concern (at least now) is my ability to continue to work. Some have said they worked throughout their treatment..others have said it would have been impossible. I am hoping and praying that I will be able to work as that not only helps me finaincially, but also with the joy of being around my coworkers and contributing to the success of the operation I get moral boosts. Ya know, something to look forward to besides the ICK.
Sorry for typos as both my little fingers are arthritic (years of being a computer tech) so please bear with me.
I am a tad older than you ...58 here...I'll be "celebrating" my 59th birthday on treatment. One for the books, eh? But I do not want to complain ..many others have so much more to complain about legitimately. But that is just me ...if complaining helps you, by all means, I'll be glad to hear it.
I hope that we can be moral and other support for each other as we board this train headed for the unknown. I have not yet figured out how to PM around here and I think they remvoe email addresses if I leave them. But if you are on FB, feel free to look up "Hugh Akston" ... my profile pic is me standing in a black shirt with the letter Q on it. From Bella Vista,Arkansas.
Good luck, sir. Let's do this and lets NOT let the turkeys get us down!
Don - Beagledad
same here beagledad hpv16 positive which Ive been told is curable but will be a rough time in treatment if theirs anything good from this but yea well get through this buddy.
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Thank you for the Info wbcgarusswbcgaruss said:Welcome TO The Club
Nobody joins by choice and welcome to the forum. I would suggest you check out the listing at the top of the page first it is called The Superthread-loads of information in there. On what to expect I would say the first weeks of radiation and chemo are not difficult but as they add up it can make you very tired. The chemo also makes some folks sick or nauseous but there are many modern meds to help control it. I guess when you said fitted you meant fitted for a mask to hold your head still for rads. Depending on the area and how hard they are radiating it they may suggest you get a feeding tube in case you have trouble swallowing later on. Also unless you are carrying a lot of extra weight right now then you should eat lots of everything you like now and put on some pounds as you may need the reserves later if you have trouble eating a lot. If you are like most of us you will get to a point where food is bland and has no taste at all and at that point if you can still swallow you will be just forcing food to maintain your weight. If you make smoothies that is a good item to get down.
Once you finish your treatments your body is pretty beat up and tired and they say for a couple of weeks you are still cookin from the radiation before it subsides completely. At this point for me, I slept a lot and was tired but still tried to move around some each day exercise or walking if possible. You have a tough day just sleep if you need it. This treatment can be a tough haul so just prepare yourselve's as best you can and stay close to your cancer team they are there for you so don't hesitate to call them with any questions or problems. I could call even at night as they had someone on call to answer. I had a nurse navigator assigned to me and my case do you have a navigator or something similar? That's all I can think of at the moment but as you progress post on the forum any questions you have there are many who have gone through your situation or similar. If you want private message missusS as her husband recently finished treatment and he is about 10 weeks out. She would have some first hand info and advice-Take Care-God Bless-Russ
Thank you for the helpful information I will go through the main threads info. Was anyone able to work through this or did they have to come out for a while?
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going thru this together
Wildman....if you decide to "friend" me on FB, please let me know what name you used..I screen ALL requests and say yes to very few. TY
I bet there will be some times when you and I will want to communicate without involving the others or taking up their valuable time.
Don-Beagledad..aka Hugh Akston (FB only)
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I Know Some DIDWildman said:Thank you for the Info wbcgaruss
Thank you for the helpful information I will go through the main threads info. Was anyone able to work through this or did they have to come out for a while?
Work through it. I was not working at the time but I can tell you there was no way I could have worked through it. Others have but it affects everyone a little differently but the general effects are the same. I would say if you are working keep working till you either have to cut back for a while or quit for awhile. You will get through this and be working agan for sure. Take Care-God Bless-Russ
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Beagledad Just To Let You KnowBeagleDad said:going thru this together
Wildman....if you decide to "friend" me on FB, please let me know what name you used..I screen ALL requests and say yes to very few. TY
I bet there will be some times when you and I will want to communicate without involving the others or taking up their valuable time.
Don-Beagledad..aka Hugh Akston (FB only)
You guys can private message each other here on CSN also-explained below---
Send Private Message
Click on the members name on the post to the left side which is either by itself or underneath their picture.
This will take you to their member page.
Click on “contact user”
Type your message and enter the CAPTCHA code and click send message.
Another Way
CSN E-mail
Registered CSN members may send and receive messages from other users through the CSN internal messaging system. The system allows members to contact each other while protecting their actual email address. Messages can be accessed via your CSN home page.
To send a new message using the Send a Message form:
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Log on to your CSN account at www.cancer.org/csn using your username and password; you will be directed to the CSN Home page.
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From the Home page, click on "CSN Email" located around the center of the blue box labeled "Connect and Communicate."
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On the next page, click on "Write a new message"
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Type the CSN screen name of the member you wish to contact on the "to" field. Or, select the name of the member you wish to contact from the “My Friends” dropdown list.
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Type your subject line and your message.
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Click on "Send Private Message"
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PmBeagleDad said:going thru this together
Wildman....if you decide to "friend" me on FB, please let me know what name you used..I screen ALL requests and say yes to very few. TY
I bet there will be some times when you and I will want to communicate without involving the others or taking up their valuable time.
Don-Beagledad..aka Hugh Akston (FB only)
Sent pm Facebook name I laughed when I looked back at your post IT field here to (computer tech, systems analyst) what a coincidence.
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So sorry to hearWildman said:Pm
Sent pm Facebook name I laughed when I looked back at your post IT field here to (computer tech, systems analyst) what a coincidence.
So sorry to hear of your diagnosis. Went through almost the same thing as you, but no chemo. Didn't work for the whole time, but had plenty of sick leave saved up to get by. Was tired once the radiation started, but everyone is different, so it will be your choice. There are plenty of great people on here who can help you any questions. It will be a long bumpy road, but you can do it. Try to keep a positive attitude, even though it is cancer. The hardest part for me was losing taste buds. I am 4 moths since last radiation treatment and they are only back about 40 percent. So have to just wait it out for them to come back. Take Care and God Bless
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working thru tx
Know of several who have worked thru tx, but it typically depends on the treatment regiment you are getting. Getting concurrent Rads and Chemo make it tougher, and One might be smarter to take a leave from work. One of my co-workers only got zapped in 3 places/session and no Chemo, and he worked thru it. I was getting concurrent C&R, and getting Rad-zapped in 20 places/session. By the way, that co-worker's C came back soon on him and spread, so his C Dr. didn't do right by him.
One thing I thought of before tx was what Chemo would do to my immune system, and being around co-workers (I was a metalworking factory Inspector), and using the same restroom. The Chemo Dr. had forewarned me that I would not be able to work, and she was right about that. Very first meet with her she said I'd have to get a Power Port and FT/Peg installed before tx, and "We'll have you on Morphine," so she knew the severity of what was coming my way. That said, your C Dr. would be the one to ask, as he/she knows your treatment regiment.
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Thank you allLogan51 said:working thru tx
Know of several who have worked thru tx, but it typically depends on the treatment regiment you are getting. Getting concurrent Rads and Chemo make it tougher, and One might be smarter to take a leave from work. One of my co-workers only got zapped in 3 places/session and no Chemo, and he worked thru it. I was getting concurrent C&R, and getting Rad-zapped in 20 places/session. By the way, that co-worker's C came back soon on him and spread, so his C Dr. didn't do right by him.
One thing I thought of before tx was what Chemo would do to my immune system, and being around co-workers (I was a metalworking factory Inspector), and using the same restroom. The Chemo Dr. had forewarned me that I would not be able to work, and she was right about that. Very first meet with her she said I'd have to get a Power Port and FT/Peg installed before tx, and "We'll have you on Morphine," so she knew the severity of what was coming my way. That said, your C Dr. would be the one to ask, as he/she knows your treatment regiment.
Thanks all for the info and what to look forward to.
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Treatment feedback,
Radiation was not that challenging for me - I tolerated it well. Chemo, though was tougher.
I am an electrical engineer, and I was able to work the whole way through. In fact, I went up to a large construction job in Canada before I even finished chemo. (I'd go home, get the treatment - give myself a week's vacation to recover and fly back up there).
It took me a while to get my energy back- and depending on what you do for a living, I'd certainly let your coworkers know. They will help you through it!
Electrical engineering isn't comparatively physically demanding. So - depending on your employment - be prepared to slow down a bit, or take some time off, if needed. Don't let yourself get worn down, or injured on the job!
If you haven't applied for FMLA - I strongly recommend it!
I am 16 months post treatment, and except for some numbness in my arms, hands and feet, I feel pretty normal. My energy and focus is back, and I'm on another construction job in Oregon.
I wish you all, the best possible outcome(s) from your respective treatments. Hang in there - you WILL get through this!
mg
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Thank you Motorcycleguymotorcycleguy said:Treatment feedback,
Radiation was not that challenging for me - I tolerated it well. Chemo, though was tougher.
I am an electrical engineer, and I was able to work the whole way through. In fact, I went up to a large construction job in Canada before I even finished chemo. (I'd go home, get the treatment - give myself a week's vacation to recover and fly back up there).
It took me a while to get my energy back- and depending on what you do for a living, I'd certainly let your coworkers know. They will help you through it!
Electrical engineering isn't comparatively physically demanding. So - depending on your employment - be prepared to slow down a bit, or take some time off, if needed. Don't let yourself get worn down, or injured on the job!
If you haven't applied for FMLA - I strongly recommend it!
I am 16 months post treatment, and except for some numbness in my arms, hands and feet, I feel pretty normal. My energy and focus is back, and I'm on another construction job in Oregon.
I wish you all, the best possible outcome(s) from your respective treatments. Hang in there - you WILL get through this!
mg
looks like they will put a picc line in thursday and want to start my chemo and radiation on Monday. Guess Im on the fastrack now. lol
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Wildman,
Radiation and Chemo is a scary proposition - but like all things ... it passes with time.
You may lose your sense of taste for a while - so eat ALL of your favorites this weekend - and LOTS of them. (Loss of taste is hard to describe, until you've been there a while...)
Do all you can, to maintain a positive attitude. It really does help!
I see you have a very lovely supporter with you, there (wife? girlfriend? fiance?). She will be your biggest asset through this process - trust me!
Again - I wish you the best possible outcome. It looks and sounds like you will achieve that goal!
Keep in touch with the people on this Network .... it really does help...
mg
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Unfortunately I will be going
Unfortunately I will be going through this with you guys too. I was diagnosed with HPV tonsil cancer of left side with 4cm clavical lymph. 7weeks radiation and 6-7 weeks chemo is the plan to start on 11/11 at 11:00 oddly enough. Wild man... I would read up on the 3 dose cisplatin... I have read higher occurr of permanent side effects such as hearing loss have occurred with that dosing. My Oncologist agreed.
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3 dose cisplatinOhNoItsMe said:Unfortunately I will be going
Unfortunately I will be going through this with you guys too. I was diagnosed with HPV tonsil cancer of left side with 4cm clavical lymph. 7weeks radiation and 6-7 weeks chemo is the plan to start on 11/11 at 11:00 oddly enough. Wild man... I would read up on the 3 dose cisplatin... I have read higher occurr of permanent side effects such as hearing loss have occurred with that dosing. My Oncologist agreed.
Yes the 3 doses of Cisplatin my main cancer Dr said he didnt recommend because of the side effects so he is going with the weekly for 6 to 7 weeks. His backup is an older guy that was recommending the 3 heavy aggressive doses.
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I hate to hear your going though this tooOhNoItsMe said:Unfortunately I will be going
Unfortunately I will be going through this with you guys too. I was diagnosed with HPV tonsil cancer of left side with 4cm clavical lymph. 7weeks radiation and 6-7 weeks chemo is the plan to start on 11/11 at 11:00 oddly enough. Wild man... I would read up on the 3 dose cisplatin... I have read higher occurr of permanent side effects such as hearing loss have occurred with that dosing. My Oncologist agreed.
I hate to hear your going though this too but we will keep each others spirits up.
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Thank you for the heads up on tastemotorcycleguy said:Wildman,
Radiation and Chemo is a scary proposition - but like all things ... it passes with time.
You may lose your sense of taste for a while - so eat ALL of your favorites this weekend - and LOTS of them. (Loss of taste is hard to describe, until you've been there a while...)
Do all you can, to maintain a positive attitude. It really does help!
I see you have a very lovely supporter with you, there (wife? girlfriend? fiance?). She will be your biggest asset through this process - trust me!
Again - I wish you the best possible outcome. It looks and sounds like you will achieve that goal!
Keep in touch with the people on this Network .... it really does help...
mg
Yes I have a great support circle this is my wife of 28 years and my family and her family are very supportive. I need to drop some weight but hate to do it this way.
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Wildman,
I dropped 45 pounds at one point. I had a feeding tube, but never really used it (although I probably should have, at the end).
I've gained back about 20-25, and food still tastes a little "faded", but good enough. I find it easier to maintain a lower weight, though - which is good!
I also did concurrent Cisplatin, and my hearing was already a little compromised. I am currently still functioning without hearing aids - but I should be looking into them in the near future. (I also had 5 FU (Flourocil?), follow up - which seemed to be the most challenging of all...)
It's a strange experience, for sure - and one that will change your outlook on life. I'm glad you have a wife of 28 years, to help you through!
I personally have a girlfriend. I told her she didn't sign up for Cancer treatment - but she said "I'm here". To be honest, I don't think it would have been very "pretty", if I'd have done it on my own; she kept me eating nutritious food, and made sure my spirits stayed up! (In fact, she's shared information on nutrition with people on here, and I'd be glad to get you (and your wife) in touch with her - if you'd like. It really did help ... a LOT!!) (Just PM me, if you think that would help..)
I get a sense that you're a pretty positive guy, and with all the support you have - I think you'll do much better than most!
mg
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