Tonsil Ca
Comments
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I had the same
I had the same diagnosis and treatment as you did. HPV positive, left tonsil. They gave me the "option" of no further treatment, but my local rad/oncologist told me that the surgery CANNOT get out every cancer cell, and my best option for a long life was to complete the radiation treatments - same as you - 30 treatments, low dose. I finish my last RAD treatment tomorrow. Yeah. Truth is, I have hated every one of them. I only had RADS to the left side, neck and tonsil area. My surgeon did not think I needed the tonsil area RADS, but the rad oncologist would not do the treatment unless he followed the "gold standard" protocol which meant both tonsil and neck area so I had to surrender.
Side effects for me have been that darn mucous which started after the first treatment, loss of some hair along the neck line on both sides, swollen throat, moderate sores on side on my tongue, and sleepiness. I had a lot of trouble with nausea during the first three weeks, and have not been able to eat much. I drink Scandishakes as much as I can tolerate them. I usually sleep 12 hours at night, but feel good during the day. I have been able to drive myself to treatment 30 miles away every day. My neck did burn but I used the Radiagel which they gave me and have not had the pain others have noted.
I think I have more problems from the neck dissection and the surgery. Shoulder/arm pain, trouble swallowing, choking issues, numbness, some ear pain. I had my surgery at Barnes in St. Louis which is four hours away. It is a very rough surgery, but I did not want Chemo. Completed my RADS locally.
What really helped me was the long weekends "off" during the holidays. Also, they took me off for 3 additional days because I was losing weight too fast (and I had to have the mask re-done - ugh).
The radiation treatments are not what any of us want. However, if my cancer comes back at least I know I did every thing I could to keep it at bay. By the way, I took Xanax before each treatment which made it more tolerable. Ask them to cut the eye holes out of your mask --- it helps.
Keep us updated. You are in my thoughts and I wish you the best. Hang in there.0 -
Masksukichu61832 said:I had the same
I had the same diagnosis and treatment as you did. HPV positive, left tonsil. They gave me the "option" of no further treatment, but my local rad/oncologist told me that the surgery CANNOT get out every cancer cell, and my best option for a long life was to complete the radiation treatments - same as you - 30 treatments, low dose. I finish my last RAD treatment tomorrow. Yeah. Truth is, I have hated every one of them. I only had RADS to the left side, neck and tonsil area. My surgeon did not think I needed the tonsil area RADS, but the rad oncologist would not do the treatment unless he followed the "gold standard" protocol which meant both tonsil and neck area so I had to surrender.
Side effects for me have been that darn mucous which started after the first treatment, loss of some hair along the neck line on both sides, swollen throat, moderate sores on side on my tongue, and sleepiness. I had a lot of trouble with nausea during the first three weeks, and have not been able to eat much. I drink Scandishakes as much as I can tolerate them. I usually sleep 12 hours at night, but feel good during the day. I have been able to drive myself to treatment 30 miles away every day. My neck did burn but I used the Radiagel which they gave me and have not had the pain others have noted.
I think I have more problems from the neck dissection and the surgery. Shoulder/arm pain, trouble swallowing, choking issues, numbness, some ear pain. I had my surgery at Barnes in St. Louis which is four hours away. It is a very rough surgery, but I did not want Chemo. Completed my RADS locally.
What really helped me was the long weekends "off" during the holidays. Also, they took me off for 3 additional days because I was losing weight too fast (and I had to have the mask re-done - ugh).
The radiation treatments are not what any of us want. However, if my cancer comes back at least I know I did every thing I could to keep it at bay. By the way, I took Xanax before each treatment which made it more tolerable. Ask them to cut the eye holes out of your mask --- it helps.
Keep us updated. You are in my thoughts and I wish you the best. Hang in there.
After I had my trial run with the mask, it was rubbing my eyelids, so they cut eyeholes, after that , everything went smoothly, didn't need any anti anxiety meds.0 -
Ditto on the Xanaxsukichu61832 said:I had the same
I had the same diagnosis and treatment as you did. HPV positive, left tonsil. They gave me the "option" of no further treatment, but my local rad/oncologist told me that the surgery CANNOT get out every cancer cell, and my best option for a long life was to complete the radiation treatments - same as you - 30 treatments, low dose. I finish my last RAD treatment tomorrow. Yeah. Truth is, I have hated every one of them. I only had RADS to the left side, neck and tonsil area. My surgeon did not think I needed the tonsil area RADS, but the rad oncologist would not do the treatment unless he followed the "gold standard" protocol which meant both tonsil and neck area so I had to surrender.
Side effects for me have been that darn mucous which started after the first treatment, loss of some hair along the neck line on both sides, swollen throat, moderate sores on side on my tongue, and sleepiness. I had a lot of trouble with nausea during the first three weeks, and have not been able to eat much. I drink Scandishakes as much as I can tolerate them. I usually sleep 12 hours at night, but feel good during the day. I have been able to drive myself to treatment 30 miles away every day. My neck did burn but I used the Radiagel which they gave me and have not had the pain others have noted.
I think I have more problems from the neck dissection and the surgery. Shoulder/arm pain, trouble swallowing, choking issues, numbness, some ear pain. I had my surgery at Barnes in St. Louis which is four hours away. It is a very rough surgery, but I did not want Chemo. Completed my RADS locally.
What really helped me was the long weekends "off" during the holidays. Also, they took me off for 3 additional days because I was losing weight too fast (and I had to have the mask re-done - ugh).
The radiation treatments are not what any of us want. However, if my cancer comes back at least I know I did every thing I could to keep it at bay. By the way, I took Xanax before each treatment which made it more tolerable. Ask them to cut the eye holes out of your mask --- it helps.
Keep us updated. You are in my thoughts and I wish you the best. Hang in there.
I use Xanax for the first week with the mask. Helped greatly with the anxiety...
After the first week, I was used to it so no longer needed it.
Best,
John0 -
I was diagnosis with tonsil
I was diagnosis with tonsil cancer on Sept 23, 2011. The left side. When prepping for surgery a second primary was found in the lower lobe of my left lung, this postponed surgery till October 20th. The lung turned out to be a stage 1. I had both surgically removed on the same day. I was blessed they found it so early. The neck had one lymph node involvement, and was rated at stage 2 possibly a stage 3. The oncology team recommended Chemotherapy using Cisplatin, Erbitex and Radiation for 30 treatments. I now have only 5 more sessions to go. By far the worst to endure is the radiation. Just 20 minutes per day on the table, most of the time is for set up, for 8 positions. The radiation, which is accumulative in effects, has essentially barbequed the back of my throat with the accompanying pain, loss of taste, loss of saliva and extreme tongue sores. I can swallow and have been counseled to continue to swallow or they will have to give me therapy to teach my throat to swallow after the treatment. I have been using tetracaine pops to control the pain.
I would recommend a positive attitude with maximum support from your friends and family. The infusion nurses are angels of mercy in helping with the affects of the radiation. Hydration is very important and I would recommend at least a liter of fluid in addition to the drugs.
Be very strong mentally, this will be a time that tries your soul.
Buddy B0 -
Welcome BuddyBuddy B said:I was diagnosis with tonsil
I was diagnosis with tonsil cancer on Sept 23, 2011. The left side. When prepping for surgery a second primary was found in the lower lobe of my left lung, this postponed surgery till October 20th. The lung turned out to be a stage 1. I had both surgically removed on the same day. I was blessed they found it so early. The neck had one lymph node involvement, and was rated at stage 2 possibly a stage 3. The oncology team recommended Chemotherapy using Cisplatin, Erbitex and Radiation for 30 treatments. I now have only 5 more sessions to go. By far the worst to endure is the radiation. Just 20 minutes per day on the table, most of the time is for set up, for 8 positions. The radiation, which is accumulative in effects, has essentially barbequed the back of my throat with the accompanying pain, loss of taste, loss of saliva and extreme tongue sores. I can swallow and have been counseled to continue to swallow or they will have to give me therapy to teach my throat to swallow after the treatment. I have been using tetracaine pops to control the pain.
I would recommend a positive attitude with maximum support from your friends and family. The infusion nurses are angels of mercy in helping with the affects of the radiation. Hydration is very important and I would recommend at least a liter of fluid in addition to the drugs.
Be very strong mentally, this will be a time that tries your soul.
Buddy B
Yep, sounds like you have been introduced to the war....
Your next few weeks shouldn't be much worse than the last few you have just endured. It just takes a few weeks post rads to stop cooking.
Hydration is key like you mention as well as a positive attitude.
I'm nearly 3 years out now and have regained pretty much 100% of both saliva and taste...hoping you do as well...time will tell.
Keep using those throat swallow muscles. I would eat a few of the DelMonte sliced peaches in light syrup each day.
They were slippery, and had enough bulk to still require some swallowing muscles to be involved.
Best,
John0 -
FeedbackSkiffin16 said:Welcome Buddy
Yep, sounds like you have been introduced to the war....
Your next few weeks shouldn't be much worse than the last few you have just endured. It just takes a few weeks post rads to stop cooking.
Hydration is key like you mention as well as a positive attitude.
I'm nearly 3 years out now and have regained pretty much 100% of both saliva and taste...hoping you do as well...time will tell.
Keep using those throat swallow muscles. I would eat a few of the DelMonte sliced peaches in light syrup each day.
They were slippery, and had enough bulk to still require some swallowing muscles to be involved.
Best,
John
John,
Thanks so very much for you letter. Sometimes it is the strand of rope that I need. Someone else who has "been here and done that". I am most defiantly counting the days, hours, minutes and seconds, till my last radiation. I have a gasto tube in place which I supplement my limited ability to eat. I would 'dine more resplendently' if not for my mouth and tongue sores. I am anxious to regain some taste. I can taste vanilla, and this means that ice cream is a requirement. One other additional attitude 'medication' is that my wife and I planned a trip to Cancun post treatment as a reward for the body and soul. We live in Colorado and though the winter has been mild, the thought of the beach is a 'mind' saver.
Buddy0 -
VanillaBuddy B said:Feedback
John,
Thanks so very much for you letter. Sometimes it is the strand of rope that I need. Someone else who has "been here and done that". I am most defiantly counting the days, hours, minutes and seconds, till my last radiation. I have a gasto tube in place which I supplement my limited ability to eat. I would 'dine more resplendently' if not for my mouth and tongue sores. I am anxious to regain some taste. I can taste vanilla, and this means that ice cream is a requirement. One other additional attitude 'medication' is that my wife and I planned a trip to Cancun post treatment as a reward for the body and soul. We live in Colorado and though the winter has been mild, the thought of the beach is a 'mind' saver.
Buddy
I lost all sense of taste during my first radiation treatment. Funny you should mention vanilla, because it was the first taste I got back after rads. I ate tons of vanilla cookies and milk for awhile!
I rewarded myself for completion of treatment with a trip to Costa Rica. Although tired, I had a very relaxing time. It was worth the effort required to accomplish.
I'm now one week into this round of radiation, just starting to see a few side-effects. My wife and I are thinking about what we're going to do to get away for awhile in the spring.
Best of fortune to you!
Pat0 -
Strawberry EnsureBuddy B said:Feedback
John,
Thanks so very much for you letter. Sometimes it is the strand of rope that I need. Someone else who has "been here and done that". I am most defiantly counting the days, hours, minutes and seconds, till my last radiation. I have a gasto tube in place which I supplement my limited ability to eat. I would 'dine more resplendently' if not for my mouth and tongue sores. I am anxious to regain some taste. I can taste vanilla, and this means that ice cream is a requirement. One other additional attitude 'medication' is that my wife and I planned a trip to Cancun post treatment as a reward for the body and soul. We live in Colorado and though the winter has been mild, the thought of the beach is a 'mind' saver.
Buddy
LOL, Strawberry Ensure was what got me through....
I didn't have the PEG, so a lot of Ensure, water and a few of those sliced peaches is what got me through each day for several weeks....of course with plenty of pain meds during feeding times.
I tried different flavors, thinking I didn't really have any taste. But apparently I had enough, Strawberry was the only one that I liked...same with the peaches. I figured well, since I can't taste I'll just get the unsweetened...wrong, I could definitely taste the difference.
I think that you'll do well Buddy...it's just a long slow process....mentioned here several times. Measured in weeks and months, more than days and weeks.
Stay hydrated, keep up on the calories and maintain that positive attitude...kick cancer butt.
Best,
John0 -
Pat,longtermsurvivor said:Vanilla
I lost all sense of taste during my first radiation treatment. Funny you should mention vanilla, because it was the first taste I got back after rads. I ate tons of vanilla cookies and milk for awhile!
I rewarded myself for completion of treatment with a trip to Costa Rica. Although tired, I had a very relaxing time. It was worth the effort required to accomplish.
I'm now one week into this round of radiation, just starting to see a few side-effects. My wife and I are thinking about what we're going to do to get away for awhile in the spring.
Best of fortune to you!
Pat
Please check with your
Pat,
Please check with your physician,this may help you. I had my primary doctor prescribe a Tetracycline pop to suck on when the mouth pain gets me down. It is a topical antiseptic and numbs the tongue. My oncologist thought it an excellent idea. Any port in a storm!!!
Buddy0 -
John,Skiffin16 said:Welcome Buddy
Yep, sounds like you have been introduced to the war....
Your next few weeks shouldn't be much worse than the last few you have just endured. It just takes a few weeks post rads to stop cooking.
Hydration is key like you mention as well as a positive attitude.
I'm nearly 3 years out now and have regained pretty much 100% of both saliva and taste...hoping you do as well...time will tell.
Keep using those throat swallow muscles. I would eat a few of the DelMonte sliced peaches in light syrup each day.
They were slippery, and had enough bulk to still require some swallowing muscles to be involved.
Best,
John
I tried the sliced
John,
I tried the sliced peaches and they do slide down easy. They make my mouth burn though, I wonder if there is some type of acid in the brand I tied?
Buddy0 -
Hmmm...Buddy B said:John,
I tried the sliced
John,
I tried the sliced peaches and they do slide down easy. They make my mouth burn though, I wonder if there is some type of acid in the brand I tied?
Buddy
Not sure, I only went with the jarred DelMonte in Light Syrup. They just looked so good and I have always loved peaches.
Though I didn't really have it bad with the rads as for burning and such.
Now at almost three years out, I can eat everything...peppers, spices, etc...
Some still have a lot of problems, like Dawn for instance. She still has problems with spices and crusty types of foods, plus a lot of other foods. But she had a terrible time during treatment with her mouth.
Maybe you could try some kind of organic type of jarred...more natural and less preserving... But I suppose the peaches could have some natural acids in them also.
Best,
John0 -
EnsureSkiffin16 said:Strawberry Ensure
LOL, Strawberry Ensure was what got me through....
I didn't have the PEG, so a lot of Ensure, water and a few of those sliced peaches is what got me through each day for several weeks....of course with plenty of pain meds during feeding times.
I tried different flavors, thinking I didn't really have any taste. But apparently I had enough, Strawberry was the only one that I liked...same with the peaches. I figured well, since I can't taste I'll just get the unsweetened...wrong, I could definitely taste the difference.
I think that you'll do well Buddy...it's just a long slow process....mentioned here several times. Measured in weeks and months, more than days and weeks.
Stay hydrated, keep up on the calories and maintain that positive attitude...kick cancer butt.
Best,
John
Your post reminded me that I still have almost a case of Strawberry Ensure in the laundry room. Oh those were the days, drinking 4 or more per day. Strawberry was my fav and I made shakes with it. I actually missed it so lately I have been making strawberry shakes with fresh strawberrys. Funny thing is that I never really liked strawberrys prior to the Ensure days. Now I need to cut back to low fat ice cream. Luckily I haven't develped a craving for McDonalds cheesburgers and fries.0 -
I'm with You....jtl said:Ensure
Your post reminded me that I still have almost a case of Strawberry Ensure in the laundry room. Oh those were the days, drinking 4 or more per day. Strawberry was my fav and I made shakes with it. I actually missed it so lately I have been making strawberry shakes with fresh strawberrys. Funny thing is that I never really liked strawberrys prior to the Ensure days. Now I need to cut back to low fat ice cream. Luckily I haven't develped a craving for McDonalds cheesburgers and fries.
Ensure isn't really too bad for a supplemental lunch these days.
JG0 -
Hi BuddySkiffin16 said:Hmmm...
Not sure, I only went with the jarred DelMonte in Light Syrup. They just looked so good and I have always loved peaches.
Though I didn't really have it bad with the rads as for burning and such.
Now at almost three years out, I can eat everything...peppers, spices, etc...
Some still have a lot of problems, like Dawn for instance. She still has problems with spices and crusty types of foods, plus a lot of other foods. But she had a terrible time during treatment with her mouth.
Maybe you could try some kind of organic type of jarred...more natural and less preserving... But I suppose the peaches could have some natural acids in them also.
Best,
John
You can try another brand, but peaches burned me too. (honestly, my mouth was so bad, water burned. I couldn't even drink for 5 months. It was awful.) Fruit in general burned like heck. You can try tempering the burn, with a bit of blended ricotta cheese or cottage cheese, sour cream, Greek yogurt, or marscarpone.
Also, you might want to try L-Glutamine. It has been shown to help with mouth sores and burning during rads and chemo. Use a heaping teaspoon in a cup of water and swish and swallow.
Other stuff you might consider that I found non-burny when I started to swallow again, was avocados and bananas.0 -
Sore mouthsweetblood22 said:Hi Buddy
You can try another brand, but peaches burned me too. (honestly, my mouth was so bad, water burned. I couldn't even drink for 5 months. It was awful.) Fruit in general burned like heck. You can try tempering the burn, with a bit of blended ricotta cheese or cottage cheese, sour cream, Greek yogurt, or marscarpone.
Also, you might want to try L-Glutamine. It has been shown to help with mouth sores and burning during rads and chemo. Use a heaping teaspoon in a cup of water and swish and swallow.
Other stuff you might consider that I found non-burny when I started to swallow again, was avocados and bananas.
Thank you for the suggestions for my eating. I read your advice on L-Glutamine and ran to the health food store and bought a bottle. I do like avocados and bananas. They will be included with ricotta, cottage and sour cream. I will buy some Greek Yogurt. I am getting pumped up to get this over with,,,! 3 more therapies! Thursday I have Erbitex, which just seems to have the ability to kick my butt for about 36 hours. With the adrenaline boost from my treatment ending, I might just be able to dance all the way home! I am on Fentanyl patches and Oxycodone 5-325. Is there a withdrawal procedure that anyone is aware of? I will follow closely the Doctors recommendations but any additional information will ease my concerns.
Buddy0 -
Withdrawal Procedure....Buddy B said:Sore mouth
Thank you for the suggestions for my eating. I read your advice on L-Glutamine and ran to the health food store and bought a bottle. I do like avocados and bananas. They will be included with ricotta, cottage and sour cream. I will buy some Greek Yogurt. I am getting pumped up to get this over with,,,! 3 more therapies! Thursday I have Erbitex, which just seems to have the ability to kick my butt for about 36 hours. With the adrenaline boost from my treatment ending, I might just be able to dance all the way home! I am on Fentanyl patches and Oxycodone 5-325. Is there a withdrawal procedure that anyone is aware of? I will follow closely the Doctors recommendations but any additional information will ease my concerns.
Buddy
I didn't have the patches, but I know that Dawn is familiar with withdrawl from them, and can probably make suggestions...
Best,
John0 -
WithdrawlSkiffin16 said:Withdrawal Procedure....
I didn't have the patches, but I know that Dawn is familiar with withdrawl from them, and can probably make suggestions...
Best,
John
I tried Dawn (search for members), seems I have the wrong one since she has not been on in 10 years. I am a novice navigating. Would you tell me what board 'i might find her at?
Buddy0
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