Learning about my cancer and treatment plan
I recently was diagnoised with tonsil cancer. Treatment plan is 33 radiations and 3 chemo. Combined on day 1, 21, and 43. Still healing from the neck dissection and incision. What is a PEG tube? This is all so overwhelming but want to learn and understand everything I can before treatments begin. Will I be able to work? My job demands alot of my voice.
Comments
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Hello and welcome Sable!
You have found the best and most supportive (and fun) forum on the internet....not to mention, very smart!
I know what you mean about it being overwhelming when you first get started....we don't know the lingo, and we're in territory we've never been before....I liken it to being dropped by parachute into a foreign country where we don't know the language or the customs....and feeling totally lost. You will start catching on, really!! I had 35 rads along with the three chemo's (Cisplatin)....and then I had another 3 chemo's after rads were over (Cisplatin and 5FU). There are a couple tricks to chemo....take your anti-nausea meds before you feel sick...just take them because you have them....and hydrate, hydrate, hydrate....drink all the water you can stand, and then drink some more. You're going to want that hydration for rads, too....so keep a 2 liter bottle next to you to sip on all through the day....everyday during treatment.
Some folks continued to work, but most do not. It's not just your voice that will be affected.....you're going to lose weight, feel weak, and fatigued.....There's nothing saying you can't give it the old college try, but don't whip yourself if you can't do it. Fighting this disease takes every ounce of energy a person can muster.
A PEG tube is a feeding tube that is inserted into your stomach, so you can continue to hydrate and get nutrition during treatment if your mouth and throat become too sore to do it orally. It is very minor surgery....can hurt for a couple of days afterwards, and then it becomes an extra appendage (and/or your best friend if that's the only way you can get water and food down). Some Drs. like to take the wait and see approach, my Dr. put one in before I ever started treatment because I was thin to start with. I never used it once during rads, but used it exclusively for the adjuvent chemo, as my mouth got pretty tore up by the 5FU.
When do you start treatment? This forum is a great place to ask questions, any questions, and get good answers....everybody here has either been through treatment or cared for someone going through it.....
I'm glad you found us.
p
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Welcome....
First off relax..., you have found a great site, tons of experienced survivors and warriors such as yourself.
I was in a place similar to you almost five years ago now...
STGIII SCC HPV+ Tonsils, and a lymphnode.., nine weeks of chemo in cycles like you (Cisplatin, Taxotere and 5FU)... I didn't have a PEG which is a feeding tube. Some here haven't needed one such as myself, many swear they wouldn't have survived with out one.
A lot going in depends on your weight, health, tolerance for some pain... But, all of that being said, your body sometimes over-rides all of that and you need a PEG to survive... And then again, if your MD recommends or prescribes one, they are the experts...
I also had an additional seven weeks of concurrent weekly chemo (Carboplatin) with the 35 daily rads, similar to you.
Good news is I'm all clear and clean at nearly five years post treatment.
The not so good news, the treatment is (or can be) brutal...
I lost all taste during the first week of those cycles, but it would come back just in time to start over again. But during radiation, I lost it about 3 weeks in, until a few months post rads, along with most all saliva.
It took a long time to get all taste and saliva back, six months or so jusy to have enough to survive well if it never got better (three months or so I could eat, just didn't have much taste yet).., but eventually it did return. Within two years, I had 100% taste back, and nearly 95% or so of the saliva, a little dry at night sleeping.
Those same periods, half way through rads, to a few weeks post are the worse.. Your throat will be like hamburger, or feel like someone slipped you a glass of drano.
Hydration, calorie intake and pain management..., that is the key to survive if all else is going well...
This is the main period when most need a PEG.., some don't tolerate chemo well..
The big thing here I can tell you...
Everyone is different, and responds differently.
In reality, I was very lucky, I rarely got sick, could handle feedings with pain meds, and myself just swapped over to all liquids during the rough periods (Ensure Plus)..
It's very doable, but very rough at times...
The first thread on this forum The SuperThread has tons of info to get you started... Others will chime in for a welcome also..
As for work, I did during treatment, but it was computer work I did from home connecting to office computers...
I fished in my boat, and did yard work until about half way through rads.. Low calorie intake and the Florida heat did me in and I had to take it easyfor a month or two..
More than likely, your voice is going to be shot for a few months..., maybe not..., but that would be an exceptioon I believe...
Survival is most important, you do whatever you have to do, to survive cancer and treatment...
Again,
Welcome ~ John
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welcome
Sable1,
Welcome to the H&N forum,, sorry you find yourself here.
Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate.
Some people swear by the PEG, others swear at the PEG. I myself had two. You should study the subject more prior to any decisions,
It is good that you want to learn and understand everything and if you develop a team and a plan you trust (and positive attitude) you are half way there.
Some people manage to work, more than likely at a reduced pace. If you can take time off, do it/.
Many of us struggle to speak a pre-treatment level for a while.
The side effects from treatment can be brutal, but very few of us get hit by everything. You just do your best at dealing with everything coming at you.
Visit the Superthread (at top of page) for valuable information.
Don’t be too afraid, we all have stood in your shoes and we made it through.
Matt
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Thank you for the reply.phrannie51 said:Hello and welcome Sable!
You have found the best and most supportive (and fun) forum on the internet....not to mention, very smart!
I know what you mean about it being overwhelming when you first get started....we don't know the lingo, and we're in territory we've never been before....I liken it to being dropped by parachute into a foreign country where we don't know the language or the customs....and feeling totally lost. You will start catching on, really!! I had 35 rads along with the three chemo's (Cisplatin)....and then I had another 3 chemo's after rads were over (Cisplatin and 5FU). There are a couple tricks to chemo....take your anti-nausea meds before you feel sick...just take them because you have them....and hydrate, hydrate, hydrate....drink all the water you can stand, and then drink some more. You're going to want that hydration for rads, too....so keep a 2 liter bottle next to you to sip on all through the day....everyday during treatment.
Some folks continued to work, but most do not. It's not just your voice that will be affected.....you're going to lose weight, feel weak, and fatigued.....There's nothing saying you can't give it the old college try, but don't whip yourself if you can't do it. Fighting this disease takes every ounce of energy a person can muster.
A PEG tube is a feeding tube that is inserted into your stomach, so you can continue to hydrate and get nutrition during treatment if your mouth and throat become too sore to do it orally. It is very minor surgery....can hurt for a couple of days afterwards, and then it becomes an extra appendage (and/or your best friend if that's the only way you can get water and food down). Some Drs. like to take the wait and see approach, my Dr. put one in before I ever started treatment because I was thin to start with. I never used it once during rads, but used it exclusively for the adjuvent chemo, as my mouth got pretty tore up by the 5FU.
When do you start treatment? This forum is a great place to ask questions, any questions, and get good answers....everybody here has either been through treatment or cared for someone going through it.....
I'm glad you found us.
p
Thank you for the reply. Treatment is expected to start mid April. Obviouly I have alot of abbreviation learning to do. I read an early post you had and it seems like our plan is almost the same. However, what is 5FU? My dr. did talk about the feeding tube but only if it is needed. Im still trying to get a grip on this. Its been crazy since I had the neck dissection. Tears is a frequent thing that just flows. Sure am glad I found this site. Hopefully talking with others like me and learning will help me get through the accepting part and to move strongly forward. Thank you.
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Wow...i didn expect or evenSkiffin16 said:Welcome....
First off relax..., you have found a great site, tons of experienced survivors and warriors such as yourself.
I was in a place similar to you almost five years ago now...
STGIII SCC HPV+ Tonsils, and a lymphnode.., nine weeks of chemo in cycles like you (Cisplatin, Taxotere and 5FU)... I didn't have a PEG which is a feeding tube. Some here haven't needed one such as myself, many swear they wouldn't have survived with out one.
A lot going in depends on your weight, health, tolerance for some pain... But, all of that being said, your body sometimes over-rides all of that and you need a PEG to survive... And then again, if your MD recommends or prescribes one, they are the experts...
I also had an additional seven weeks of concurrent weekly chemo (Carboplatin) with the 35 daily rads, similar to you.
Good news is I'm all clear and clean at nearly five years post treatment.
The not so good news, the treatment is (or can be) brutal...
I lost all taste during the first week of those cycles, but it would come back just in time to start over again. But during radiation, I lost it about 3 weeks in, until a few months post rads, along with most all saliva.
It took a long time to get all taste and saliva back, six months or so jusy to have enough to survive well if it never got better (three months or so I could eat, just didn't have much taste yet).., but eventually it did return. Within two years, I had 100% taste back, and nearly 95% or so of the saliva, a little dry at night sleeping.
Those same periods, half way through rads, to a few weeks post are the worse.. Your throat will be like hamburger, or feel like someone slipped you a glass of drano.
Hydration, calorie intake and pain management..., that is the key to survive if all else is going well...
This is the main period when most need a PEG.., some don't tolerate chemo well..
The big thing here I can tell you...
Everyone is different, and responds differently.
In reality, I was very lucky, I rarely got sick, could handle feedings with pain meds, and myself just swapped over to all liquids during the rough periods (Ensure Plus)..
It's very doable, but very rough at times...
The first thread on this forum The SuperThread has tons of info to get you started... Others will chime in for a welcome also..
As for work, I did during treatment, but it was computer work I did from home connecting to office computers...
I fished in my boat, and did yard work until about half way through rads.. Low calorie intake and the Florida heat did me in and I had to take it easyfor a month or two..
More than likely, your voice is going to be shot for a few months..., maybe not..., but that would be an exceptioon I believe...
Survival is most important, you do whatever you have to do, to survive cancer and treatment...
Again,
Welcome ~ John
Wow...i didn expect or even think that my thread would get such a quick response. I really am just trying to put my head around all of this but sure am glad and relieved that people actually care and listen. Im not for sure if I have figured out exactly how to reply correctly so if Im doing this wrong, please advise. I have already experienced the "hamberger throat"with the neck dissection. Two weeks post opt and I am just now getting saliva back, talking without a slur, and swallowng on the right side with minimal pain. Obvioulsy rads and chemo could do alot worse to my throat. It all feels like a horrible dream that comes to reality each and every morning. I hope Iake friends here on this site. We all need friends who been there or doing that. Thank you for the information, I have alot to learn.
Sable1
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I will definitely hit theCivilMatt said:welcome
Sable1,
Welcome to the H&N forum,, sorry you find yourself here.
Percutaneous endoscopic gastrostomy (PEG) is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate.
Some people swear by the PEG, others swear at the PEG. I myself had two. You should study the subject more prior to any decisions,
It is good that you want to learn and understand everything and if you develop a team and a plan you trust (and positive attitude) you are half way there.
Some people manage to work, more than likely at a reduced pace. If you can take time off, do it/.
Many of us struggle to speak a pre-treatment level for a while.
The side effects from treatment can be brutal, but very few of us get hit by everything. You just do your best at dealing with everything coming at you.
Visit the Superthread (at top of page) for valuable information.
Don’t be too afraid, we all have stood in your shoes and we made it through.
Matt
I will definitely hit the Suprethread. Im not for sure if "affraid" is the word I would use to describe myself. How about petrafied! When you say brutal, in what ways? I know eaow every each person is different but I want to know about everything or way this could affect me. Thank you again
Sable1
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5FUSable1 said:Thank you for the reply.
Thank you for the reply. Treatment is expected to start mid April. Obviouly I have alot of abbreviation learning to do. I read an early post you had and it seems like our plan is almost the same. However, what is 5FU? My dr. did talk about the feeding tube but only if it is needed. Im still trying to get a grip on this. Its been crazy since I had the neck dissection. Tears is a frequent thing that just flows. Sure am glad I found this site. Hopefully talking with others like me and learning will help me get through the accepting part and to move strongly forward. Thank you.
LOL..., you cantell it's a bad azz drug when it has FU in the name... OK, you have expereinced a little of my abi-normal humor...
5FU is Fluorouracil, just another type pf chemo..
For me, and others, we had a power port inserted surgically into our chest before treatment started. They can infuse the chemo into you faster through a pump and the port....
They can also do blood draws through it as well..
Anyways, for myself, I would get my big doses of chemo (Cisplatin, Taxotere and 5FU) TPS on Monday..., the first two with a lot of other meds that same day.
At the end of the day, they'd hook-up a fanny pack with a bag of the 5FU in it, insert a tube into the port (via a needle type device), and it would pump into me about every 30 seconds until it ran out Thursday night.
I'd clamp it off, turn the pump off and Friday they would remove the pump and flush the port until next time.
For me, my MD likes to leave the port in for two years (greatest chance for recurrence) before removing it..
So a little after two years, I was officially de-ported..., LOL.
John
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No You Don't LOL...Sable1 said:I will definitely hit the
I will definitely hit the Suprethread. Im not for sure if "affraid" is the word I would use to describe myself. How about petrafied! When you say brutal, in what ways? I know eaow every each person is different but I want to know about everything or way this could affect me. Thank you again
Sable1
Hey, this cancer treatment crap has a very fast learning curve.., You'll be slinging terms before you know it...
Read over the SuperThread...
Just ask questions as much as you like, nothing is off limits here...
I can't think of anything that you will expereince that someone else hasn't...
Your MD's should have given you a list or they will more than likely of all of the possible side effects from treatment and the chemo mainly.
We are here for those, and more importantly... for all of the thngs you might have go on, that the MD's never tell you about, or don't know themself as they haven't walked in your shoes..
John
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MORE
Sable1,
Petrified works for me, it is a scary place to be.
Brutal, Hmmm, as an example, for me, I had a “brutal” neck burn during weeks 6, 7 & 8, which was the worst pain caused by treatments, but Silver Sulfadiazine Cream came to the rescue and I survived my neck burn wearing a smile.
Brutal can be nausea, constipation, swollen throat, sore mouth sore tongue, sore throat, pain, sleeplessness, PEG problems, no taste, no saliva too much mucus, acid stomach, etc…. While I dabbled in each of the above, only a few approached the level of brutal.
All we can do is describe what happened to us and what we did to deal with the side effects. For me, the #1 thing I learned before treatments (which was helpful) was drink lots of water, every day and to swallow often.
That is a start.
Matt
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Welcome to the club
Sable1, welcome to the club, your treatment plan is pretty much the same as mine. I'm scheduled to start march 17. There is a ton of good information on this site, and some wonderful people as well. stay positive and remember that everything happens for a reason.
good luck
RJ
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sable1, welcome to our family
sable1, welcome to our family and sorry you had to find us. you will make it thru like the rest of us did. it is a rough road but we all came thru w/a few battle scars. you will have yours too but it better than the alternitive. we will be here for you when you have questions, concerns or just want to vent. we are always on the sidelines for you so come here as often as you want. we will take this jouney with you. be sure to check out the superthread. lots of great info. keep us posted on your progress.
God bless you,
dj
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Welcome to the life saving
Welcome to the life saving group. I am caretaker of my husband. This site got us through some really tough times and is getting me through today. My husband, Jim had Base of tongue BOT stage four with two lymph nodes involved. He had 40 RADS and 2 chemo. He was unable to continue the chemo because it was damaging his kidney. Because of age and stage of cancer he was given a 50/50 chance. His doctor believed in PEG before treatment. He had too many patients wait and see and lose so much weight they almost died. He also said, why would you want to go through surgery when you are worn down and in pain. I agree. Jim had a little discomfort the first day and that was it. He has been on the PEG for three years now because he chokes on most things now. I am praying your treatment goes well and your first scan is NED
Debbie
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several of us
looks like there are several of us starting about the same time...my husband will have his first radiation treatment tomorrow at 1:00...he will have his weekly chemo on Tuesday...we have already had the week long treatments and the surgery already..he also had a peg tube put in a few weeks ago also...hope we can help each other thru this..i am so anxious..so hard to watch him be in pain...our youngest daughter will graduate with honors from college on may 10th..we are praying he will feel weel enough to aw least be able to enjoy it..His last treatment will be on April 25th if all goes well...i am so glad to have found this site and to be able to read all the old posts and ask questions..feels good to see all the people who have made it thru these treatments!
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PEG Tube
If you want to see a PET tube in action click on my name Hondo then go to my Expressions I have pictures there of me when I first got my PEG tube. Click on the picture and it will enlarge. It is not a bad thing it is what it takes to keep us alive. Welcome to CSN.
God Bless
Hondo
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Can relate
Also sorry to hear you are here, but this is a great place to get help, answers, information and a place to lean on heavily - I was diagnosed stage IV tonsil cancer Oct 18th, 2013 , I started treatments at Thanksgiving and ended them Jan 17th, 2014 - I am around 7 weeks out and waiting until April 14th for PET/CT to see if I am free and clear of the cancer - I had 35 rad treatments and 7 chemo with cisplatin, dose at 40 every week on Wed if possible to aid the radiation effects and also work on its own to help kill the cancer cells - It is a rough road but it IS doable and you will come through the treatments when all is done - possible (probable) effects you will experience along the way - loss of taste, I lost mine about 2 weeks in - I then drank Ensure for the rest of the treatments until about 2 days at the end when the sore in my throat from the radiation was too sore to drink over - I then started on feeding through my PEG tube with Osmolite 1.5, 6 cans per day, breakfast, lunch and dinner - a little past half way through I started hyrdating through the PEG with gatorade, 64 ounces a day plus the Ensure - you will need to hydrate contantly, your body will require it, water is the best, it may start to taste bad ( I love Phrannie's swamp water analogy) so be prepared with other liquids - whatever works for you - it will be different for all persons - in preparation for this journey I had the saliva gland on my good side moved, it now produces some saliva so I am not as bad off as others who have dry mouth to a worse degree - I also had a port put in for chemo and fluids and a PEG tube before everything started - I am glad I had the tube, some make it through without but weightloss can be dodgy so you need to make sure you get nutrition and fluids throughout!!! At the end it took me about 2-3 weeks to start on soft foods again - cream of wheat, yogurt, pudding - at 7 weeks I eat everything and can taste everthing - thank God - I feel fortunate - in between you will get days after chemo that you feel wiped out - just rest, eat and hydrate - exercise when you can - just passing on advice from my docs end - I am sure your team is working hard for you - sorry to go on but sharing the same I hope I can be of some help - please post as often as you want - this site and the people on it were my lifeline - they are the best - I never dreamed I would face anything like this - they along with my family got me thorugh it - be strong, be tough, lean on someone when you need to, ask questions - I found the radiation oncology nurses to be the best for help - okay that's enough for now
All the best -
Steve
I should organize my thoughts better here but I hope this is helpful -
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WelcomeSteve5 said:Can relate
Also sorry to hear you are here, but this is a great place to get help, answers, information and a place to lean on heavily - I was diagnosed stage IV tonsil cancer Oct 18th, 2013 , I started treatments at Thanksgiving and ended them Jan 17th, 2014 - I am around 7 weeks out and waiting until April 14th for PET/CT to see if I am free and clear of the cancer - I had 35 rad treatments and 7 chemo with cisplatin, dose at 40 every week on Wed if possible to aid the radiation effects and also work on its own to help kill the cancer cells - It is a rough road but it IS doable and you will come through the treatments when all is done - possible (probable) effects you will experience along the way - loss of taste, I lost mine about 2 weeks in - I then drank Ensure for the rest of the treatments until about 2 days at the end when the sore in my throat from the radiation was too sore to drink over - I then started on feeding through my PEG tube with Osmolite 1.5, 6 cans per day, breakfast, lunch and dinner - a little past half way through I started hyrdating through the PEG with gatorade, 64 ounces a day plus the Ensure - you will need to hydrate contantly, your body will require it, water is the best, it may start to taste bad ( I love Phrannie's swamp water analogy) so be prepared with other liquids - whatever works for you - it will be different for all persons - in preparation for this journey I had the saliva gland on my good side moved, it now produces some saliva so I am not as bad off as others who have dry mouth to a worse degree - I also had a port put in for chemo and fluids and a PEG tube before everything started - I am glad I had the tube, some make it through without but weightloss can be dodgy so you need to make sure you get nutrition and fluids throughout!!! At the end it took me about 2-3 weeks to start on soft foods again - cream of wheat, yogurt, pudding - at 7 weeks I eat everything and can taste everthing - thank God - I feel fortunate - in between you will get days after chemo that you feel wiped out - just rest, eat and hydrate - exercise when you can - just passing on advice from my docs end - I am sure your team is working hard for you - sorry to go on but sharing the same I hope I can be of some help - please post as often as you want - this site and the people on it were my lifeline - they are the best - I never dreamed I would face anything like this - they along with my family got me thorugh it - be strong, be tough, lean on someone when you need to, ask questions - I found the radiation oncology nurses to be the best for help - okay that's enough for now
All the best -
Steve
I should organize my thoughts better here but I hope this is helpful -
Sorry you had the need to find us but glad you did. Ask your doctor about the difference between a PEG and g-tube. I had the g-tube and it seemed quite simple but I only put Ensure and water in it. Also, ask about the difference in Hohn catheter and Port. I have had the Hohn twice now without any complications and am told it is primarily used for short term situations. Mine came out right after tx was finished. I had Cisplatin and radiation in early 2012 (cancer of lower jaw). Currently doing chemo only Erbitux and Taxol for recurrence. Know that there are lots of side effects with the rads/chemo but you won't get them all and we each get them to varying degrees. During the middle of tx, I slept about 22 hours a day. I took the anti-nausea pills and never experienced any issues. My worst was sores on my lips. My neck and cheek turned brown but never broke open or hurt. Nutrition and hydration are key. When my mask was made, I was told it was like getting a facial and it truly was. The treatments themself were not bad, but the side effects were very difficult. My suggestion, take it as it comes and deal with it. Be educated but don't spend needless worry over side effects that you may or may not get.
Prayers for an easy journey.
Candi in St Louis
0
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