Tongue primary vs. tonsils and feeding tubes
Comments
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James TaylorNW DINO said:Tongue Primary
Mike -
Have you scheduled a PET scan to help determine primary? Had biopsy done showing SCC from a lump removed from right side of neck. My source was unknown until I had a PET - showed BOT as primary. 35 rads, 1 Cisplatin then 5 Erbitux. Had feeding tube after 2 weeks of treatment. Finished last rad Dec 15th. Treatment was rough at times but my recovery has happened very quickly since completion. Was able to eat solid foods X mas. Lost about 25lbs. Had tube removed Jan 15th - sure needed it though. Just recieved the all clear PET March 21st! I consider myself VERY fortunate as I am doing great & feeling better every week. Saliva & taste buds returning. Someone mentioned the face "mask" that can be a little scary at first - the radiation dept will take a mold of your face. Nice they had a sound system that allowed me to pick music during my visits. Stay positive as you will conquer the beast soon!
My choice of music during rads...they gave me a choice to bring in a CD and leave it there.... I should actually donate it. I don't think that I've listened to it since that time, LOL...
Xanax worked wonders for me the first week of rads. After that I was used to the routine and knew every click, whirl, rotation and buzz of the machine... Definitely knew when the last zap was finished for the day and was waiting to be unbolted.
Nice thing with the CD, you knew after about 3 - 5 songs it was time to go... It was a great help initially because it gave me a reference for time. Each song being 3 - 5 minutes or so.
Congrats on your all clear March 21st as well.
John0 -
JeepmanSkiffin16 said:James Taylor
My choice of music during rads...they gave me a choice to bring in a CD and leave it there.... I should actually donate it. I don't think that I've listened to it since that time, LOL...
Xanax worked wonders for me the first week of rads. After that I was used to the routine and knew every click, whirl, rotation and buzz of the machine... Definitely knew when the last zap was finished for the day and was waiting to be unbolted.
Nice thing with the CD, you knew after about 3 - 5 songs it was time to go... It was a great help initially because it gave me a reference for time. Each song being 3 - 5 minutes or so.
Congrats on your all clear March 21st as well.
John
I had stage 4 SCC, unknown primary. I did have a biopsy on my tongue, a few exploratories, CT scans PET Scan, but never found primary. I had a modified radical neck dissection, they had to remove my left salivary gland (submandibular) the tumor, and 23 lymph nodes, 3 were positive. I had 7 teeth pulled (my three wisdom teeth, and the ones next to them) a PEG tube placed, and then I had 30 rads. I refused to have chemo since I have another serious blood disorder called Fanconi Anemia and chemo is so toxic to us it would kill me. Radiation was enough for my body to deal with. Majority of FA patients who go thru rads die. Like 6/7 out of 10 don't make it.
I had some battle, but I'm still here. So this is doable. I'm a peg tube advocate. I was only about 120 to 125 lbs at my diagnosis. (they made me try and gain weight before treatment started I gained a tiny bit and was maybe 130) I did not have weight to lose. That peg tube saved my life, I would have died without it. I needed mine for 18 months. For me the hardest part of treatment was after rads had ended and the side effects peaked, about 2 weeks after the last radiation. I ended up so sick that I lost 40 lbs.
For me, my mouth really took a hit. My mouth and tongue were just one giant sore. I wish I would have known about this board back then, and about the Glutamine powder. (that info is also in the Superthread) My tongue is still in daily discomfort and pain sometimes and I'm two years out. I do feel the Glutamine has helped. I've been taking a heaped spoonful every day.
Each one of us has pretty much experienced all the side effects, some of us just worse than others. Hoping the experience won't be too bad in your case.0 -
Jeepmansweetblood22 said:Jeepman
I had stage 4 SCC, unknown primary. I did have a biopsy on my tongue, a few exploratories, CT scans PET Scan, but never found primary. I had a modified radical neck dissection, they had to remove my left salivary gland (submandibular) the tumor, and 23 lymph nodes, 3 were positive. I had 7 teeth pulled (my three wisdom teeth, and the ones next to them) a PEG tube placed, and then I had 30 rads. I refused to have chemo since I have another serious blood disorder called Fanconi Anemia and chemo is so toxic to us it would kill me. Radiation was enough for my body to deal with. Majority of FA patients who go thru rads die. Like 6/7 out of 10 don't make it.
I had some battle, but I'm still here. So this is doable. I'm a peg tube advocate. I was only about 120 to 125 lbs at my diagnosis. (they made me try and gain weight before treatment started I gained a tiny bit and was maybe 130) I did not have weight to lose. That peg tube saved my life, I would have died without it. I needed mine for 18 months. For me the hardest part of treatment was after rads had ended and the side effects peaked, about 2 weeks after the last radiation. I ended up so sick that I lost 40 lbs.
For me, my mouth really took a hit. My mouth and tongue were just one giant sore. I wish I would have known about this board back then, and about the Glutamine powder. (that info is also in the Superthread) My tongue is still in daily discomfort and pain sometimes and I'm two years out. I do feel the Glutamine has helped. I've been taking a heaped spoonful every day.
Each one of us has pretty much experienced all the side effects, some of us just worse than others. Hoping the experience won't be too bad in your case.
My husband's primary is tonsil...just in the third week of treatment. Plan is to do three chemos (cisplatin) during the seven weeks of rads. Surgery is not being ruled out after all of this. PEG was put in three weeks before first rad/chemo. My husband has struggled with discomfort with the PEG for some reason (right, Sweetblood?!)but overall is getting used to it. If he had to have it put in during treatment, it would not have been good. As of now, swallowing is becoming somewhat difficult but he is still eating - without tasting
Overall, things are going okay right now. Good luck to you and hope all goes well. 0 -
Wow...thanks for taking the time to write thistnsilcncer said:Tonsil...
Wow! Everyone's advice is so good! I was diagnosed with SCC, primary tumor growing from my right tonsil on December 1st, 2010. By the time they actually decided there was a problem and sent me to Ear, Nose and throat, the cancer had spread to all my lymph nodes in my right side, my left tonsil and the lymph node right off of my left tonsil. I'm done with radiation (33 of them) and had chemo (only 2 Cysplatin as it affected my hearing a little bit and they felt that the benefits of doing the last one were less than the risks). The sore throat hit around 3 weeks into treatment, right after my first chemo. The PEG tube was a life saver. I could take nothing but small sips of water by mouth for about 6 weeks of treatment but I only lost about 25 lbs so the tube worked exactly like it was supposed to. I had a PEG tube placed a week and a half before treatment started (at my oncologists reccomendation) and I'm glad that I did as my body was so tired from everything else going on that it would have been harder to do it during. It's a minor procedure, small incision, worth it. I think that you could probably eat through the pain, but the combination of pain, no saliva, and no taste makes it almost impossible. The only way I can think to describe it would be to look at a picture of a turkey dinner in a magazine, tear it out and eat it. Same effect. I only lost hair from the radiation line (the back of my neck up to the tops of my ears), and my neck got VERY red, but they can give you zinc oxide cream to use as well as some over the counter creams (Aquaphor works GREAT) to help with it. Make sure you use them exactly as the doctor says so your skin doesn't break. Mine didn't. Mucus was a problem, but I was able to control it with constant sips of water. Mine was more disgusting than anything, didn't really choke me or anything like that. Herbal teas were great. Couldn't taste them but could smell them and that satisfies somewhat. I'm now 11 weeks out from radiation, my taste is about 75% back with sweet still being the missing one. About 2 weeks after I finished radiation, I started getting radiation blisters in my throat and on my tongue. I understand that this goes on for about 6 to 8 weeks normally, I'm still dealing with them but I guess I'm a lucky rare one
. The magic mouthwash is great stuff, I've also found that once the blisters go away off of your tongue and they're just on your throat, put the mouthwash in a spray bottle (I emptied a chloroseptic one and filled it with it) and that way you can spray it directly onto your throat and miss your tongue (once you can actually start tasting again, you don't wanna numb those taste buds!) The most important thing is try to keep your spirits up, laugh as much as you can, try to keep your routine as normal as possible. Sleep when your body tells you to but not all day because then you're up all night, try to stay as active as possible. If you want to cry, do. It's ok to have a feel sorry for yourself moment, cancer sucks and it sucks that we have it,we don't deserve it. But we do have it, and after you get done feeling sorry for yourself, smile, and be thankful for all the good things that you have in your life that bless you. I listened to Christian music every morning before radiation so that while I was on that table in my "mask", I would have something running through my head to calm me so I wasn't focused on being strapped down. (The mask is a plastic mold they make of your head and neck that goes from the top of your head to the tops of your shoulders-it has lots of little holes in it and they make nose holes so you can breathe but you have a piece that goes into your mouth and it can be very confining. They put it over you and clamp it to the table during radiation so that you are in the exact same position and the beams are hitting the exact same spot every time). That's about all the advice I can give at this point. I have surgery May 17th so technically I'm still in treatment. If you have any other questions, please feel free to ask.....and I'll keep you in my prayers! Good luck!
Most of all of are trying to continue living some semblance of our lives, do treatment and help our buddies on this site. Thank you for taking the time to write this. Everyone has been very helpful with my as I prepare for 2 May, and inititate treatment. I know it is really gonna suck, but I am going to try to keep living life as best as I can. What a lot of great info that you have provided me, thanks.
I will keep you in my prayers too.
Mike0 -
RadsNW DINO said:Tongue Primary
Mike -
Have you scheduled a PET scan to help determine primary? Had biopsy done showing SCC from a lump removed from right side of neck. My source was unknown until I had a PET - showed BOT as primary. 35 rads, 1 Cisplatin then 5 Erbitux. Had feeding tube after 2 weeks of treatment. Finished last rad Dec 15th. Treatment was rough at times but my recovery has happened very quickly since completion. Was able to eat solid foods X mas. Lost about 25lbs. Had tube removed Jan 15th - sure needed it though. Just recieved the all clear PET March 21st! I consider myself VERY fortunate as I am doing great & feeling better every week. Saliva & taste buds returning. Someone mentioned the face "mask" that can be a little scary at first - the radiation dept will take a mold of your face. Nice they had a sound system that allowed me to pick music during my visits. Stay positive as you will conquer the beast soon!
NW Dino,
How long can I expect the rads to last per visit? Does it vary with the person/SCC? I am not clostrophobic, so I don't expect any issues during the procedures.
Mike0 -
Rad sessionjeepman said:Rads
NW Dino,
How long can I expect the rads to last per visit? Does it vary with the person/SCC? I am not clostrophobic, so I don't expect any issues during the procedures.
Mike
Your Rad session's length of time depends on how many places they have to zap with rads, mostly. If you are "unknown Primary," as I was, they may zap more places, because they don't have a specific place of origin to target. I was getting it in 20 places/session, and they would usually last some 25-minutes. The longest are the ones that they also do Xrays, which for some of us is once/week.
The PS/CT showed no Primary for me, and they even did a second last-minute exploratory w/biopsy in hopes of finding it, but didn't, and never have. It happens that way for some of us.
kcass0 -
Mask and time framejeepman said:Rads
NW Dino,
How long can I expect the rads to last per visit? Does it vary with the person/SCC? I am not clostrophobic, so I don't expect any issues during the procedures.
Mike
Mike
The RADS run from 20-25 minutes. At least they did for me...IT takes time to get locked in place and then they must set up the machine and get started, then when finished, unlock you from the table. Take Skiffins recommendation and listen to music. I listened to best of Luther Vandross and I was usually done in 5 songs. I knew by the song how long I had left but music moves so fast that the time does fly by.....
The mask is scary and a little clostrophobic, but like my wife told me "This is what you do to cure cancer, so do it" Pretty blunt and to the point she is....So just get psyched and go do it. It is the major cure for throat cancer and works very well even with the side effects.
I am 13 months post treatment and doing well. Had peg for 13 months also and I vote for it as a life saver. Good luck to you on May 2nd (I think).
All the best,
Steve0 -
RADSjeepman said:Rads
NW Dino,
How long can I expect the rads to last per visit? Does it vary with the person/SCC? I am not clostrophobic, so I don't expect any issues during the procedures.
Mike
Mike -
My radiation visits were only 14 minutes. 4 - 5 songs depending on the music (maybe one old Doors tune!) The radiation "girls" played country music on Fridays from their own CD's. Always wore a cotton t shirt as the mask was a little tight. The only other recomendation I have is to get a good tooth cleaning & checkup prior to your first radiation appt. Hydration is also important - never left home without my water bottle!
I know you must be anxious to get started - I was! Thoughts & prayers are with you during your treatment & quick recovery
Dino0 -
SUCKS...jeepman said:Wow...thanks for taking the time to write this
Most of all of are trying to continue living some semblance of our lives, do treatment and help our buddies on this site. Thank you for taking the time to write this. Everyone has been very helpful with my as I prepare for 2 May, and inititate treatment. I know it is really gonna suck, but I am going to try to keep living life as best as I can. What a lot of great info that you have provided me, thanks.
I will keep you in my prayers too.
Mike
I dunno, I use to think it sucked, and it is a rough diet for sure....and maybe it's just because I haven't went through it for almost two years now.
But in reality, it didn't really suck...it just is what it is. Something you have to go through to get to where you wanna be....mainly healthy (or somewhat) and alive.
It's definitely better than the alternative, so in that perspective, it REALLY doesn't suck so much.
Anyways, ya it's tough, but you can get through...many of us have....just so we can stay on here and give you a little hope, some of our experiences, and tell you....
I still go to work everyday, fish nearly every weekend, do everything I did before minus a little saliva mainly at night, and taste that isn't quite what it was before...but you just adjust to the things that you like more now.
It doesn't really suck that bad, for everyone.
Best,
John0 -
Your welcomejeepman said:Wow...thanks for taking the time to write this
Most of all of are trying to continue living some semblance of our lives, do treatment and help our buddies on this site. Thank you for taking the time to write this. Everyone has been very helpful with my as I prepare for 2 May, and inititate treatment. I know it is really gonna suck, but I am going to try to keep living life as best as I can. What a lot of great info that you have provided me, thanks.
I will keep you in my prayers too.
Mike
Not a problem! You know, we're all in this together and any positive words of encouragement that I can give or anything that I can say to help you feel like you aren't alone in this and that the things you experience are normal for the disease we have is why I decided to join! Anytime you need a cheerleading....I'm just a few typed words away!0 -
Same Herejeepman said:Rads
NW Dino,
How long can I expect the rads to last per visit? Does it vary with the person/SCC? I am not clostrophobic, so I don't expect any issues during the procedures.
Mike
Usually 15 - 20 minutes, a little longer on Mondays when the did x-rays with the mask on...
Dress very casual, it was this time of year for me and Florida. I wore slip-on sperry canvas shoes, shorts and a t-shirt.
The shirt came off most of the time, ...sometimes it would be alittle cold so they had warm sheets.
One thing that you're going to lose pretty fast is humility...
They poked probed and prodded every orifice I had through total treatment, stripped me down and paraded me around....when you're done, more than likely it won't bother you at all....
I went dor comfort, if I was gonna be miserable, at least I was gonna dress the part and be comfortable....I had some means to rebel anyways, LOL....
JG0 -
I brought in dance tunes.Skiffin16 said:Same Here
Usually 15 - 20 minutes, a little longer on Mondays when the did x-rays with the mask on...
Dress very casual, it was this time of year for me and Florida. I wore slip-on sperry canvas shoes, shorts and a t-shirt.
The shirt came off most of the time, ...sometimes it would be alittle cold so they had warm sheets.
One thing that you're going to lose pretty fast is humility...
They poked probed and prodded every orifice I had through total treatment, stripped me down and paraded me around....when you're done, more than likely it won't bother you at all....
I went dor comfort, if I was gonna be miserable, at least I was gonna dress the part and be comfortable....I had some means to rebel anyways, LOL....
JG
I brought in dance tunes. Helped pass the time more quickly. I had almost a 1/2 hr of table time. I had them blast my music. They always had it ready for me with my mask and blanket, because it was freezing in there.
And I still dressed for fashion, even thru treatment, no sweats or tee shirts in sight. Dresses and 4" heels. ;-) Lol. My dresses and heels make me happy. The one day I wore a pair of camo cargos and a t shirt, was the day I passed out in front of the nurses station. The staff said it was because my body was rebelling against the 'non Dawn' super casual attire. They told me I wasn't allowed to dress like that again. Lol.0 -
typing...tnsilcncer said:Your welcome
Not a problem! You know, we're all in this together and any positive words of encouragement that I can give or anything that I can say to help you feel like you aren't alone in this and that the things you experience are normal for the disease we have is why I decided to join! Anytime you need a cheerleading....I'm just a few typed words away!
You are such an awesome support, thanks, and I will let you know what happens as treatment progresses.
Mike0 -
I suppose that perspective mattersSkiffin16 said:SUCKS...
I dunno, I use to think it sucked, and it is a rough diet for sure....and maybe it's just because I haven't went through it for almost two years now.
But in reality, it didn't really suck...it just is what it is. Something you have to go through to get to where you wanna be....mainly healthy (or somewhat) and alive.
It's definitely better than the alternative, so in that perspective, it REALLY doesn't suck so much.
Anyways, ya it's tough, but you can get through...many of us have....just so we can stay on here and give you a little hope, some of our experiences, and tell you....
I still go to work everyday, fish nearly every weekend, do everything I did before minus a little saliva mainly at night, and taste that isn't quite what it was before...but you just adjust to the things that you like more now.
It doesn't really suck that bad, for everyone.
Best,
John
John,
If a person puts things into perspective, a basis of comparison as you said, maybe it won't suck as bad. And I totally agree, it beats the alternative.
Mike0 -
OMG
After reading what everone has wrote, I feel as though I am not alone....I hope your treatment goes well, and that you pull through like a trooper! I was actually pregnant my second round of the cancer comming back in my lymphnodes....First time I had it ont he side of my tongue, partial glassectomy and neck dissection....they held off on treatments since I was young and had young children to care for..but it came back in the neck on the other side, putting me at stage 4a....My last radiation treatment was Jan 31....I was given Erbitux (once a week for 8 weeks) for chemo since it was 'safe' for pregnancy...(meaning no reported deaths) and had 32 radiation treatments...My mouth is still trying to get back to normal...food still doesnt taste right....my salivia isnt the same either...I recommend a toothpaste called Biotene...Its wonderful and doesnt burn as bad as the other brands...I still cant brush with regualr paste...My teeth have become super sensitive because of treatments...I wasnt able to brush for a long time...I didnt need a tube...couldnt actually cause of the pregnancy, so I gained as much as I could and lost a bit...It took everything I had to get the food down to the baby...I counted calories and manages to put down about 1200 a day..not much...I dont knwo if anything I have written has helped...I miss certin foods alot...got hooked on painmeds and the docs helped ease me off of them but it still sucked...I really hope you sail through this, and YES bring music!!! I couldnt have made it without!!! Before you knwo it you will learn the routine and maybe even fall asleep before they are over! I caught myself snoring alot lol...Oh, and the baby is doing great..he was born 2 months eary..just 2 weeks after my last treamtment...! 2lb 13oz... He is now over 7 lbs and just absloutly amazing......Good luck, and keep all of us posted as to how you are doing!!! xoxoxo0 -
also forgot
You might be prepared for the burns you may get on your skin at the radiation site...plus some hair loss if you dont get it from the chemo..My chemo didnt have that result, but I lsot some hair on the back of my head about 2 inches up from the origional hair line....they should have plenty of meds and wrpas to help sooth any pain and peeling...my burns were 2nd degree, with some peeling...and lots of blisters.....not trying to scare you..but its something you should know about! My burns didnt appear til the last 2 weeks of treatments....and just becuae treatments end, the side effects wont..You will continue to cook for weeks after the last radiation...Noone told me about that, or maybe they did and I was too drugged to remember? either way....hang in there!!!! XOXO0 -
sweetblood22 said:
I brought in dance tunes.
I brought in dance tunes. Helped pass the time more quickly. I had almost a 1/2 hr of table time. I had them blast my music. They always had it ready for me with my mask and blanket, because it was freezing in there.
And I still dressed for fashion, even thru treatment, no sweats or tee shirts in sight. Dresses and 4" heels. ;-) Lol. My dresses and heels make me happy. The one day I wore a pair of camo cargos and a t shirt, was the day I passed out in front of the nurses station. The staff said it was because my body was rebelling against the 'non Dawn' super casual attire. They told me I wasn't allowed to dress like that again. Lol.
Good for you for not letting this crap get the best of ya! My radiatin team was awesome, they too had the musice waiting for me and my mask also every day...I actually cried on my last treatment..They kinda become like family....Or maybe Im just a wuss....xo0 -
You are blessedbunnymuffin said:also forgot
You might be prepared for the burns you may get on your skin at the radiation site...plus some hair loss if you dont get it from the chemo..My chemo didnt have that result, but I lsot some hair on the back of my head about 2 inches up from the origional hair line....they should have plenty of meds and wrpas to help sooth any pain and peeling...my burns were 2nd degree, with some peeling...and lots of blisters.....not trying to scare you..but its something you should know about! My burns didnt appear til the last 2 weeks of treatments....and just becuae treatments end, the side effects wont..You will continue to cook for weeks after the last radiation...Noone told me about that, or maybe they did and I was too drugged to remember? either way....hang in there!!!! XOXO
And just when I wanted to feel sorry for myself....you went through treatment with a pregnancy. Amazing. You are a blessed lady and I consider it a privledge to have your encouragement on the site. I will continued praying for you and your family, congrats on your little one,
Mike0 -
2ND DEGREE BURNSjeepman said:You are blessed
And just when I wanted to feel sorry for myself....you went through treatment with a pregnancy. Amazing. You are a blessed lady and I consider it a privledge to have your encouragement on the site. I will continued praying for you and your family, congrats on your little one,
Mike
Mike -
I also had slight burns & major skin peeling. This is a typical reaction to Erbitrux - as opposed to Cisplatin or other Chemo. My doc actually considered it a good sign as the Erbitrux was working. This was our choice over Cisplatin as I have a history of hearing loss & major ringing in my ears.
Did you start your treatments?? Thoughts & prayers
Dino0 -
No, bunnymuffin ur not a wuss.bunnymuffin said:
Good for you for not letting this crap get the best of ya! My radiatin team was awesome, they too had the musice waiting for me and my mask also every day...I actually cried on my last treatment..They kinda become like family....Or maybe Im just a wuss....xo
I cried my last day too. The staff was so nice to me, still are. The rad techs gave me a little mug, with some candy in it, and a Certificate of Merit and Appreciation. One of the nurses, who was actually retiring, gave me a beautiful collectable hand carved angel. She made my ball like a baby. She said the sweetest things to me, she said she will always remember my fighting spirit and cheerfulness.... I will always remember her and the rest of the staff that were great.0
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