Just Starting the Journey
Comments
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Good, Bad and Uglyrmkbrad said:Just starting also.
I am 44 years old and I was initially diagnosed with esophagus cancer just before Christmas, andiocarcinoma. I went down to the VA hospital in San Francisco to have a pet scan done and they found a tumor in my left tonsil and a small pin head size in one of my lungs. Anyway I had my tonsils out for biopsy last week. What a miserable thing, now in few weeks I am going to start chemo and radiation, they are sending me to University of California San Francisco to do the radiation, they have the new Proton therapy radiation there so I am guessing they might use that, since they said they are going to treat all three places at once. I am a kidney transplant recipient, so the conclusion since I don't smoke or drink is the immune suppressants allowed the cancer to grow and spread. Anyway I am scarred and the tonsillectomy is miserable, how does it compare with the chemo and radiation.
Brad
Hi Brad...
Like you already probably know or have read, everyone responds differently.
For me the tonsils coming out was pretty rough, but doable and only lasted a few weeks tops. A little history, I had a right tonsil stage III SCC and a lymphnode HPV derived per the biopsy. I had nine weeks of chemo (three week cycles), then seven weeks of chemo with 35 rads.
The chemo wasn't bad for me, I'd lose my taste for a week or two, then it would come back for a week before I started another cycle. The chemo with radiation wasn't too bad until week 4 or 5 and lasted for several weeks after the radiation stopped.
The radiation tore my throat up pretty good, for a good six weeks. To the point of only taking in water and Ensure Plus after pain solutions or meds. The tonsils coming out only lasted a few weeks and I could eat soft foods also after pain meds. The tonsils were a little more painful, but very shorterm compared to the effects of radiation. I had no PEG nad that wasn't an issue for me.
Again, everyone is different, and I presume that everyone here can give you their version, some better, some worse.
As a side note, I don't smoke either and only drink a few beers now and then. You might have them check for HPV just for kicks. HPV derived cancer does tend to respond better to the treatment.
Good Luck, God Bless and keep us posted.
John0 -
Thankyou all for yourygfilart said:I was diagnosed with tongue
I was diagnosed with tongue cancer and was recommended that my entire tongue cut off. I am so glad i did not have to do it.
Thankyou all for your replies and support. I liken this journey to having my first child. You know its going to be very painful but the end result will be worth it.0 -
12 years after treatment for tonsil cancerPino Tea said:Thankyou all for your
Thankyou all for your replies and support. I liken this journey to having my first child. You know its going to be very painful but the end result will be worth it.
Well I guess I am one of the "Vets" and wish I had a great story to tell but I need to be honest and tell you how and what has been going on with my side effects years after treatment. First of all I agree totally with the fact that it gets worse and then better however at or around the seven year mark you may encounter some more problems. I tried living on Ensure but had too much trouble swallowing. My sons were my care takers and they would "sneak" anything they could into my drinks to help me gain weight and some of the additives (bananas for one) actually burned the raw areas of my throat. I finally found a product called Weight Gain 2000 which I was able to drink. I mixed it in warm milk and that helped it dissolve and also prevented the "clumps" from forming. Things got much better after a few months, I was gaining weight and could eat most foods but still preferred the bland foods - grits, mashed potatoes, bread pudding etc. Now I am finding out that there are other side effects which do not normally show up until the 7-10 year point. The first thing was I suddenly lost feeling in the front of my lower jaw (the chin area). It feels like I have been given a shot of Novocaine that never goes away. This is coupled with a tingling feeling shooting from my chin up to my right ear. This is a small problem but I do have to constantly wipe my lower jaw while eating since I can't feel it if I am "drooling" my food. It has also paralyzed my left vocal cord and done something to the back of my tongue making it difficult to pronounce certain sounds. These are recent events for me and I am in fact being treated as we speak My swallowing has become much more difficult however they did some tests and found that if I lowered my chin and turned my head to the left it would help my ability to swallow - it looks silly but it works. I can now usually swallow a capsule. Before this I would have to chew pills and open capsuled to take the medications. There are tests they can run to tell you if a certain position will assist the swallowing process. For about three years I was seeing different ENT specialists and getting no answers until I finally found a doctor at a University hospital who has treated numerous patients like me/us. He said this is not uncommon in patients who have had radiation to the head and neck regions. He wants to insert a feeding tube in me now before I lose too much weight and they are unable to do it. I have held off on doing this but after reading some of the comments on this board I may rethink my position. I still carry my bottle of water with me everywhere I go. One other recommendation. Find a dentist who knows how to treat head and neck radiation treatment patients. Your jaw will never heal the way it should and any type of root canal or deep filling can end up being an extraction which then brings on a whole new set of possible problems.
I hate sounding negative and at least I am still alive (and have seen the birth of two grandchildren) to be frustrated. However I also hope some of you may later what you could face in the future and not waste time as I did before I found someone who knew how to help.0 -
contextGreend said:12 years after treatment for tonsil cancer
Well I guess I am one of the "Vets" and wish I had a great story to tell but I need to be honest and tell you how and what has been going on with my side effects years after treatment. First of all I agree totally with the fact that it gets worse and then better however at or around the seven year mark you may encounter some more problems. I tried living on Ensure but had too much trouble swallowing. My sons were my care takers and they would "sneak" anything they could into my drinks to help me gain weight and some of the additives (bananas for one) actually burned the raw areas of my throat. I finally found a product called Weight Gain 2000 which I was able to drink. I mixed it in warm milk and that helped it dissolve and also prevented the "clumps" from forming. Things got much better after a few months, I was gaining weight and could eat most foods but still preferred the bland foods - grits, mashed potatoes, bread pudding etc. Now I am finding out that there are other side effects which do not normally show up until the 7-10 year point. The first thing was I suddenly lost feeling in the front of my lower jaw (the chin area). It feels like I have been given a shot of Novocaine that never goes away. This is coupled with a tingling feeling shooting from my chin up to my right ear. This is a small problem but I do have to constantly wipe my lower jaw while eating since I can't feel it if I am "drooling" my food. It has also paralyzed my left vocal cord and done something to the back of my tongue making it difficult to pronounce certain sounds. These are recent events for me and I am in fact being treated as we speak My swallowing has become much more difficult however they did some tests and found that if I lowered my chin and turned my head to the left it would help my ability to swallow - it looks silly but it works. I can now usually swallow a capsule. Before this I would have to chew pills and open capsuled to take the medications. There are tests they can run to tell you if a certain position will assist the swallowing process. For about three years I was seeing different ENT specialists and getting no answers until I finally found a doctor at a University hospital who has treated numerous patients like me/us. He said this is not uncommon in patients who have had radiation to the head and neck regions. He wants to insert a feeding tube in me now before I lose too much weight and they are unable to do it. I have held off on doing this but after reading some of the comments on this board I may rethink my position. I still carry my bottle of water with me everywhere I go. One other recommendation. Find a dentist who knows how to treat head and neck radiation treatment patients. Your jaw will never heal the way it should and any type of root canal or deep filling can end up being an extraction which then brings on a whole new set of possible problems.
I hate sounding negative and at least I am still alive (and have seen the birth of two grandchildren) to be frustrated. However I also hope some of you may later what you could face in the future and not waste time as I did before I found someone who knew how to help.
Hi Greend. Can you give us your staging and treatment so as to put this into perspective? Did you have a local tumor? Did they do surgery and/or neck dissection? What was the chemo schedule? What were the rads you got? Was it IMRT?
Thanks.
Mick0 -
Aw, come on, Mick...micktissue said:context
Hi Greend. Can you give us your staging and treatment so as to put this into perspective? Did you have a local tumor? Did they do surgery and/or neck dissection? What was the chemo schedule? What were the rads you got? Was it IMRT?
Thanks.
Mick
You're just gonna scare yourself. This could be TMI, at this point.
You are in a fragile place. Focus on the immediate future.
warmly,
Deb L.0 -
DebD Lewis said:Aw, come on, Mick...
You're just gonna scare yourself. This could be TMI, at this point.
You are in a fragile place. Focus on the immediate future.
warmly,
Deb L.
LOL, no that's just how I work. I wanted some context into the poster experience so to better compare my treatment. For me the more information I get the calmer I become. My fragility is worse when I don't know what I'm fighting. This is just my process.
Best,
Mick0 -
Processmicktissue said:Deb
LOL, no that's just how I work. I wanted some context into the poster experience so to better compare my treatment. For me the more information I get the calmer I become. My fragility is worse when I don't know what I'm fighting. This is just my process.
Best,
Mick
I'm with you Mick, it's easier for me to confront it by knowing what I have to work with, versus not knowing and letting my mind and imagination run wild...LOL.0 -
Tonsilmicktissue said:context
Hi Greend. Can you give us your staging and treatment so as to put this into perspective? Did you have a local tumor? Did they do surgery and/or neck dissection? What was the chemo schedule? What were the rads you got? Was it IMRT?
Thanks.
Mick
You know I really don't remember what stage I was - I do knnow it was very advanced but had not progressed to the brain but had spread to my neck's right side lymph nodes. I had 45 radiation treatments - still have my tattoo and took chemo at the same time. I wore the pump for RFU (I may not have the right initials) and took DDP every three weeks. They did not have to remove my lymph nodes but they are very hard still. My next appointment I will get all the technical data and post it - chemo brain is rough - plus 12 years.
Denny0 -
Stevestevenl said:Center
I just gotta say it Mick,
Everyone Breathe, Find your center!!!LOL
Steve
LOL! I didn't go to that group today because I had the rad dry run. I freaked out. It was strange - once they had the mask on me I wanted it off. They were playing Otis Redding in the office and I thought that would be good, but man I started to panic and asked that they take it off. they took it off and asked if I wanted lorazepam (Adavan) next time. I thought about it for a minute.
Here I am strapped to this table under a machine that's going to zap cancer to kingdom come. What the hell am I scared about? After another minute I said "Let's go" and I got through it. The office staff were awesome through this and my buddy Noah was on the sidelines watching.
Tomorrow is day 1. Chemo (Cisplatin 100 mg/m2) at 10am and then rads (6600 cGy in 33 treatments) at 7:20pm (PST).
Best,
Mick0 -
Freak OUTmicktissue said:Steve
LOL! I didn't go to that group today because I had the rad dry run. I freaked out. It was strange - once they had the mask on me I wanted it off. They were playing Otis Redding in the office and I thought that would be good, but man I started to panic and asked that they take it off. they took it off and asked if I wanted lorazepam (Adavan) next time. I thought about it for a minute.
Here I am strapped to this table under a machine that's going to zap cancer to kingdom come. What the hell am I scared about? After another minute I said "Let's go" and I got through it. The office staff were awesome through this and my buddy Noah was on the sidelines watching.
Tomorrow is day 1. Chemo (Cisplatin 100 mg/m2) at 10am and then rads (6600 cGy in 33 treatments) at 7:20pm (PST).
Best,
Mick
Hey Mick, Sorry to hear about the trouble, but I'm glad you got through it. My so called dry run, doesn't seem so dry after your post, is Thursday. I got freaked out today. I went to see my new dentist and after a semi brief cleaning, done by an intern, she came in and started asking me if this was a joke. Turns out that her sister works for the company that I work for. I just got up out of the chair and told her this was too weird, I had to get out of there. Just joking with her of course. But when I did this I noticed the patient in the next room was the girl that schedules all of the appointments, surgeries,etc., for my ENT. What the??????. Too weird. But the dentist was great, we had a lot of laughs, good times all around. So I guess that my Dental "CENTER" was found today.LOL
Best to all,
Steve0 -
Freakin Maskmicktissue said:Steve
LOL! I didn't go to that group today because I had the rad dry run. I freaked out. It was strange - once they had the mask on me I wanted it off. They were playing Otis Redding in the office and I thought that would be good, but man I started to panic and asked that they take it off. they took it off and asked if I wanted lorazepam (Adavan) next time. I thought about it for a minute.
Here I am strapped to this table under a machine that's going to zap cancer to kingdom come. What the hell am I scared about? After another minute I said "Let's go" and I got through it. The office staff were awesome through this and my buddy Noah was on the sidelines watching.
Tomorrow is day 1. Chemo (Cisplatin 100 mg/m2) at 10am and then rads (6600 cGy in 33 treatments) at 7:20pm (PST).
Best,
Mick
Mick, I hated the mask too, my music of choice was James Taylor's new CD, haven't listened to since treatments..LOL.
I had a prescription for Xanax to get me through it, worked great for taking the edge off. But by the end of the day I was zonked out. I did the Xanax for two days, then pinched them in half the rest of the first week. By the following week and thereafter, I was used to it and didn't need them any longer.
Like you I think it was just the initial mental thing. Once I was used to the routine I was over the anxiety.
Glad you are making it through...
John0 -
mickGreend said:Tonsil
You know I really don't remember what stage I was - I do knnow it was very advanced but had not progressed to the brain but had spread to my neck's right side lymph nodes. I had 45 radiation treatments - still have my tattoo and took chemo at the same time. I wore the pump for RFU (I may not have the right initials) and took DDP every three weeks. They did not have to remove my lymph nodes but they are very hard still. My next appointment I will get all the technical data and post it - chemo brain is rough - plus 12 years.
Denny
Sorry about the freak out. I used to bring in a cd of dance tunes, like club music. The only thing was if I started to forget where i was for a second, which hardly happened in that mask, i would start to tap my finger and want to dance. lol I would listen to 5-6 tunes and I knew it was close to being over.
I went atavan free. that damn mask was so tight, that it left waffle marks on my face. It was so tight, they had to cut out eye holes. That made it a little better. I left the first day with a migraine.0 -
Waffle Facesweetblood22 said:mick
Sorry about the freak out. I used to bring in a cd of dance tunes, like club music. The only thing was if I started to forget where i was for a second, which hardly happened in that mask, i would start to tap my finger and want to dance. lol I would listen to 5-6 tunes and I knew it was close to being over.
I went atavan free. that damn mask was so tight, that it left waffle marks on my face. It was so tight, they had to cut out eye holes. That made it a little better. I left the first day with a migraine.
LOL, Sweet, I can relate, I had those waffle marks also after most days. Also like you I grew to know about how many songs would play to keep track. I'd do several things to occupy my time. I knew where the position of the rotating machine was, how many zaps it would turn on in each of those positions and the sound that it made when they shut it off either to rotate it or for the day.0 -
skiffinSkiffin16 said:Waffle Face
LOL, Sweet, I can relate, I had those waffle marks also after most days. Also like you I grew to know about how many songs would play to keep track. I'd do several things to occupy my time. I knew where the position of the rotating machine was, how many zaps it would turn on in each of those positions and the sound that it made when they shut it off either to rotate it or for the day.
omg! i am laughing so hard. yes! yes! yes! i think i knew every click, zap and buzz of those 9 stops per treatment! it was like a familiar tune that you hate. the last week when they gave me extra zapping, i only had 7 stops, different tune, just as crappy. lol
i felt so bad, the second week of my radiation, a new guy was starting, big guy. we talked a bit before i went in. when i walked out and he saw my waffle face, he went pale. he told me he did not really want to go in after seeing that. poor guy. he told the the next time he saw me that i must be a seriously tough cookie to go in with out the atavan. he also could not take the shots, they hurt him so bad. he was funny, he said he never had a tiny girl make him look luck such a wuss. i sometimes wonder how he made out. hope he is well.0 -
LOL, yes it's funny, only another that has went through it can really relate. One time my CD got stuck and all it did was make this loud annoting sound. Man that treatment seemed like it lasted forever. All I could do was peak through the mask and see where the machine was.sweetblood22 said:skiffin
omg! i am laughing so hard. yes! yes! yes! i think i knew every click, zap and buzz of those 9 stops per treatment! it was like a familiar tune that you hate. the last week when they gave me extra zapping, i only had 7 stops, different tune, just as crappy. lol
i felt so bad, the second week of my radiation, a new guy was starting, big guy. we talked a bit before i went in. when i walked out and he saw my waffle face, he went pale. he told me he did not really want to go in after seeing that. poor guy. he told the the next time he saw me that i must be a seriously tough cookie to go in with out the atavan. he also could not take the shots, they hurt him so bad. he was funny, he said he never had a tiny girl make him look luck such a wuss. i sometimes wonder how he made out. hope he is well.
I say peek as mine wasn't cut out, I could just barely open my eyes just a crack because it was so tight. It would mash my nose down and I couldn't really open my mouth either. LOL, it's funny now, but sometimes especially if I had sneezed a few times that morning, I used to worry and wonder "what if I have to sneeze, or worse yet what if I ever got sick". There's no way they could have gotten me unbolted before I would have been majorly spazzin....
Another thing, I used to give them a hard time about "jokingly". My radiation was around 2:00PM, it seemed almost every Friday they had Pizza, they left it in an area I had to walk by. Man it smelled so great and I couldn't eat anything, I'd have to give the heck for teasing me like that....
When I finally finished all of the treatments. They asked if I wanted the Mask, I looked at them like they were crazy. They said some people take them for a reminder.... I'm like ummmm noway, unless it's to smash that sucker, I never want to see that thing again.... I haven't even listened to that James Taylor CD again, LOL....
Take Care Sweet....
John0 -
questionsGreend said:12 years after treatment for tonsil cancer
Well I guess I am one of the "Vets" and wish I had a great story to tell but I need to be honest and tell you how and what has been going on with my side effects years after treatment. First of all I agree totally with the fact that it gets worse and then better however at or around the seven year mark you may encounter some more problems. I tried living on Ensure but had too much trouble swallowing. My sons were my care takers and they would "sneak" anything they could into my drinks to help me gain weight and some of the additives (bananas for one) actually burned the raw areas of my throat. I finally found a product called Weight Gain 2000 which I was able to drink. I mixed it in warm milk and that helped it dissolve and also prevented the "clumps" from forming. Things got much better after a few months, I was gaining weight and could eat most foods but still preferred the bland foods - grits, mashed potatoes, bread pudding etc. Now I am finding out that there are other side effects which do not normally show up until the 7-10 year point. The first thing was I suddenly lost feeling in the front of my lower jaw (the chin area). It feels like I have been given a shot of Novocaine that never goes away. This is coupled with a tingling feeling shooting from my chin up to my right ear. This is a small problem but I do have to constantly wipe my lower jaw while eating since I can't feel it if I am "drooling" my food. It has also paralyzed my left vocal cord and done something to the back of my tongue making it difficult to pronounce certain sounds. These are recent events for me and I am in fact being treated as we speak My swallowing has become much more difficult however they did some tests and found that if I lowered my chin and turned my head to the left it would help my ability to swallow - it looks silly but it works. I can now usually swallow a capsule. Before this I would have to chew pills and open capsuled to take the medications. There are tests they can run to tell you if a certain position will assist the swallowing process. For about three years I was seeing different ENT specialists and getting no answers until I finally found a doctor at a University hospital who has treated numerous patients like me/us. He said this is not uncommon in patients who have had radiation to the head and neck regions. He wants to insert a feeding tube in me now before I lose too much weight and they are unable to do it. I have held off on doing this but after reading some of the comments on this board I may rethink my position. I still carry my bottle of water with me everywhere I go. One other recommendation. Find a dentist who knows how to treat head and neck radiation treatment patients. Your jaw will never heal the way it should and any type of root canal or deep filling can end up being an extraction which then brings on a whole new set of possible problems.
I hate sounding negative and at least I am still alive (and have seen the birth of two grandchildren) to be frustrated. However I also hope some of you may later what you could face in the future and not waste time as I did before I found someone who knew how to help.
Greend, congrats on the grandchildren!!! I have 5 and they are so much fun. I'm sorry you're having trouble again. I am also very glad that you are honest about what is happening to you, this forum is how I learn. You will be in my prayers. I have a few questions if you don't mind. You said things show up around the 7-10 yr mark and that you are currently being treated, is your cancer back or are you being treated for the effects from the cancer you had? What type of cancer did you have and did you only have rad or rad and chemo? I only had the rad but I'm experiencing new side effects weekly. I have been thinking that I will be back to being me at my 6 mo mark but now I've changed my mind. That's me tho, I originally expected to be back to normal 4 mos after my last treatment. My last rad trmnt was 10/22/09.
I hope things turn around for the better again for you. thanks again for your honesty.
God Bless,
Debbie0 -
me toooooooooooomicktissue said:Deb
LOL, no that's just how I work. I wanted some context into the poster experience so to better compare my treatment. For me the more information I get the calmer I become. My fragility is worse when I don't know what I'm fighting. This is just my process.
Best,
Mick
Mick, that is exactly how I feel also. I may be scared after hearing the truth but at least I know what I'm up against.
Thanks,
Debbie0 -
maskSkiffin16 said:LOL, yes it's funny, only another that has went through it can really relate. One time my CD got stuck and all it did was make this loud annoting sound. Man that treatment seemed like it lasted forever. All I could do was peak through the mask and see where the machine was.
I say peek as mine wasn't cut out, I could just barely open my eyes just a crack because it was so tight. It would mash my nose down and I couldn't really open my mouth either. LOL, it's funny now, but sometimes especially if I had sneezed a few times that morning, I used to worry and wonder "what if I have to sneeze, or worse yet what if I ever got sick". There's no way they could have gotten me unbolted before I would have been majorly spazzin....
Another thing, I used to give them a hard time about "jokingly". My radiation was around 2:00PM, it seemed almost every Friday they had Pizza, they left it in an area I had to walk by. Man it smelled so great and I couldn't eat anything, I'd have to give the heck for teasing me like that....
When I finally finished all of the treatments. They asked if I wanted the Mask, I looked at them like they were crazy. They said some people take them for a reminder.... I'm like ummmm noway, unless it's to smash that sucker, I never want to see that thing again.... I haven't even listened to that James Taylor CD again, LOL....
Take Care Sweet....
John
Skiffin16, I felt exactly as you did about the mask. I told them they could burn it, bust it, throw it away, take it home with the but noway was I taking it home. When I told my husband he was disappointed, go figure. Like any of us need that mask to remind us of the hell we went thru. I don't, I will never be able to forget those trmnts!! It is nice when the posts here can be funny and make us laugh. Have a wonderful day everyone!!
God Bless,
Debbie0
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