HELP TREATMENTS START APRIL 30
Comments
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I’m so happy your well and onBobh63 said:One Day at a Time
Your getting good advice, I've read some of the responses. Remember that each person is different and how you will react to chemo and rad will be unique to you. Deal with each issue as they come one at a time and one day at a time.
I did not do meds during rad. The first 3-4 were hard but my tricks were music (they will play it for you in the room), talking to myself, having the technition talk to me (have them tell you a status every 1.5 minutes). I was usually bolted in for about 8 min. So when they would talk me through it, it was good. After a few I started to get use to the mask. I even started to tell myself that the mask was good, it was helping me by holding me so I would not move for targeting. You will find your way with the mask, but what I have found with everthing is you have to be proactive and work at it.
I had a feeding tube installed. I believe it saved my life. I lost 30 lbs but without the tube I would have lost double that. I did NOTHING through my throat for 2 months. Believe it or not it was not about pain, it was about taste and gag reflex. Taste was horride. I developed a gag reflex from the rad that was bad and bad bouts of hiccups from the chemo. BUT, these were short periods. And, you will be different. So take them one at at time.
There are many other things I went through and a couple of things I'm still dealing with. I'm post treatment now almost 4 months and the body does heal. I'm living a normal life but deal with a couple of "new normals" that I hope will continue to heal.
Good luck. You can do this. Even when you have those days that you think you can't (I had a few) you can! Do you have a support system in place, family, friends?
I’m so happy your well and on the mend. I have an amazing support group that have encouraged and helped me. One another note they haven’t been where I am or faced what I’m facing so I feel when I talk concerns or fears they aren’t understanding. If that makes sense. It’s a struggle for real because right now it’s the fear of the unknown and I’m the type that needs to know. I am truly finding comfort here cause you all walked this path or are walking this path now. I know we are all different and handle things different but to hear other stories of dealing and coping help.
‘I’m going to ask them next Monday if they can play country music for me. It’s helps my soul and relaxes me. Hoping they say the two Ativan will be good or maybe prescribe something stronger. Hate taking any kind of med but at this point whatever gets me through I’m game. A friend is certifing me for medical marijuana she said it will help with my sleeping, eating and nausea. I am willing to try anything at this point.
Do you have any insight on mouthwash or creams for neck?? And I’m looking forward to June 18th last treatment and hope I come back strong because I’m taking one hell of a beach vacation lol
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I listened to music the wholeCharmit said:I’m so happy your well and on
I’m so happy your well and on the mend. I have an amazing support group that have encouraged and helped me. One another note they haven’t been where I am or faced what I’m facing so I feel when I talk concerns or fears they aren’t understanding. If that makes sense. It’s a struggle for real because right now it’s the fear of the unknown and I’m the type that needs to know. I am truly finding comfort here cause you all walked this path or are walking this path now. I know we are all different and handle things different but to hear other stories of dealing and coping help.
‘I’m going to ask them next Monday if they can play country music for me. It’s helps my soul and relaxes me. Hoping they say the two Ativan will be good or maybe prescribe something stronger. Hate taking any kind of med but at this point whatever gets me through I’m game. A friend is certifing me for medical marijuana she said it will help with my sleeping, eating and nausea. I am willing to try anything at this point.
Do you have any insight on mouthwash or creams for neck?? And I’m looking forward to June 18th last treatment and hope I come back strong because I’m taking one hell of a beach vacation lol
I listened to music the whole time I would get treatment. They had a radio in there and they would play it for me. When peopel would ask me how long it took me in there I'd say 4 1/2 songs haha From the time they would exit the room it'd be that long.
Magic Mouthwash is a lifesaver and as far as cream my dr had me using aquphor from the getgo. I did move on to some RX stuff at the end but many do not get the burns that I got. You can take the ativan for sure but I promise once you get a treatment or two under your belt you become more and more brave.
I'm here for you if you need it. Wish I were able to be exactly where you are because it really helps to know someone who has been thru it for those last minute questions or suggestions.
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Awe your so sweet!! And soBillie67 said:I listened to music the whole
I listened to music the whole time I would get treatment. They had a radio in there and they would play it for me. When peopel would ask me how long it took me in there I'd say 4 1/2 songs haha From the time they would exit the room it'd be that long.
Magic Mouthwash is a lifesaver and as far as cream my dr had me using aquphor from the getgo. I did move on to some RX stuff at the end but many do not get the burns that I got. You can take the ativan for sure but I promise once you get a treatment or two under your belt you become more and more brave.
I'm here for you if you need it. Wish I were able to be exactly where you are because it really helps to know someone who has been thru it for those last minute questions or suggestions.
Awe your so sweet!! And so right it would help for sure but this is the next best thing. I will inquire about the mouthwash need to pick up my floride trays this week. Also want to make an appointment with the nutritionst they have on staff there. Speech therapist tomorrow and that last appointment before the big day. I will be asking them to crank my country brings me to a happy place by my pool or the beach. This site is a God send for sure.
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This is H&N Boot Camp for the soon to be Fearless Charlene.
Charmit,
Welcome and Wow! You are a H&N member with a determination we all can learn from that. You have mined some excellent information from some of our star H&N members. They covered all the biggies, fear, mask, driving to and from, Lorazepam, PEG vs non-PEG (we almost enter two different forums here), hydration & nutrition, music for rads, etc..
There are a few items that most of us experience. Eating became a chore, the awful taste; no taste of food and the terrible feel of food were some things which stuck around awhile for me. I did take the one Lorazepam before every radiation session. I never liked mask time, but came to find it interesting. You will develop your own special routine and it will work. Adequate hydration and nutrition are probably the 2 items to get you across the finish line happy and lack of may send you to the ER. And drink lots of water and swallow often.
You will become smart fast (we all did). Let’s be optimistic, you have a graduation to attend.
Matt
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Thank you Matt I’m trying myCivilMatt said:This is H&N Boot Camp for the soon to be Fearless Charlene.
Charmit,
Welcome and Wow! You are a H&N member with a determination we all can learn from that. You have mined some excellent information from some of our star H&N members. They covered all the biggies, fear, mask, driving to and from, Lorazepam, PEG vs non-PEG (we almost enter two different forums here), hydration & nutrition, music for rads, etc..
There are a few items that most of us experience. Eating became a chore, the awful taste; no taste of food and the terrible feel of food were some things which stuck around awhile for me. I did take the one Lorazepam before every radiation session. I never liked mask time, but came to find it interesting. You will develop your own special routine and it will work. Adequate hydration and nutrition are probably the 2 items to get you across the finish line happy and lack of may send you to the ER. And drink lots of water and swallow often.
You will become smart fast (we all did). Let’s be optimistic, you have a graduation to attend.
Matt
Thank you Matt I’m trying my best to hold my nerves in and learn all I can. So I don’t suffer much and the ones caring for me won’t want to kill me lol tonsil removal wasn’t pleasant and I drove them nuts not once but twice lol second one wasn’t as bad seeing no extra biopsies were needed. I’m sure as the weeks move forward I might become a crazy lady lord help me that I don’t. I don’t do pain well and hate to be down for the count. So trying to prepare the best way I can and that is knowledge in what’s to come. So many wonderful people here have helped me already.
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good for you! At my radiationCharmit said:Awe your so sweet!! And so
Awe your so sweet!! And so right it would help for sure but this is the next best thing. I will inquire about the mouthwash need to pick up my floride trays this week. Also want to make an appointment with the nutritionst they have on staff there. Speech therapist tomorrow and that last appointment before the big day. I will be asking them to crank my country brings me to a happy place by my pool or the beach. This site is a God send for sure.
good for you! At my radiation office there is a nutritionist on staff that would meet with me once a week. I had been in speech therapy prior to radiation but during actual radiation I took break towards the end or perhaps midway thru just because I was so exhausted. I resumed afterwards. And yes to the country music!! Thats what I listened to.
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agree with matt
Hi, just got done with 15 radation treatments, and start the chem on tues. You got this, It was even a tenth of what i thought it was going to be. the swallowing part was, and i just view the weight that i have gained from the steriods i will probally lose during chemo. I think its all 90% attitude and being arround positve people!. I prepare also, but, i just sit and think that theres a reason all this is happening not sure what,, but i havent felt like what was all on google. in fact emotionally and i grown leaps and bounds.I just make little mall goals daily it really helps.Im in florida too, and in my 40 s. . and you are right that needs to be printed on a shirt!!!!!!!!from mat i think.
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YOU GOT THIS!
Hi Charmit, you sound like me just a little over 2 years ago. Everything below is my advice to you. Take it with a grain of salt or as a bible...it's just advice and it worked for me.
To begin:
I was diagnosed April 1, 2016 with stage 3 HPV SCC of the left tonsil and 3 lymph nodes, unfortunately it wasn’t an April Fool’s joke. I was 50 - 5’11’’ 218 lbs. and in otherwise good health. I’ve worked out regularly, and on-and-off for the past 15 years (no steroid use). Mary Bird Perkins and a team of LSU Doctors recommended 35 treatments – no chemo – no surgery. I decided to go with Mary Bird Perkins and LSU (I had 2 other options/opinions as well) but decided on LSU. They all had approximately an 85% success rate, and I wanted as many options as I could get on the back end if radiation didn’t work.
*Keep in mind, everyone’s body is different and everyone heals differently.
Last day of treatment:
Mucositis took over entire throat, uvula, soft palate, tonsils, 50% of hard palate, left side top and bottom of Maxillary tuberosity & vestibules, and left side of tongue front to back. My weight dropped to 181 lbs. (lost 37 lbs.), DRY Mouth, NO feeding tube, and I physically felt very good (besides my mouth), but was radiation-drained tired.
As of today (4-23-2018):
Both my ENT and Oncologist are startled as to how well I’ve done during and after treatment recovery, and say it looks as if I hadn’t even gone through 35 treatments. I have no physical appearances either in my mouth or on my neck. My tongue gets sore from time to time, my neck is a little stiffer, I get the back/neck tingles occasionally, and my mouth is drier than I like, but I am way way better off than most. Almost all my taste is back to normal or a new normal. I use hot sauce, I used to use tons now I just use more than most people. I still lightly struggle with tomato and pickled stuff, but it’s getting better and better each month. I can drink anything: coffee, tea, soda and juices, including beer and alcohol. But, coffee and alcohol (diuretics) make my mouth drier than it normally is.
*Keep in mind, everyone’s body is different and everyone heals differently.
How I got my results and my recommendations:
Listen to your doctor’s advice. They are for the most part highly intelligent (my daughter is one and she’s a smarty), experienced, and you are not their first patient. However, most of them have not gone through what you are about to. In my opinion, they got everything right except the “eat as much “food” as you can”. Let me explain: Nutrition is the best weapon you personally can bring to the fight, but getting enough good calories down can be the hard part. Maintaining your weight is your goal, you will hear it constantly from all the medical professionals. IN MY OPINION, it all comes down to your mucous membrane, and how well you take care of it. Chemo: the side effect of vomiting up stomach acid erodes the lining of your mucous membrane which may cause mucositis. If it develops, it should heal fairly quickly (4 days to a week) and cause you no significant problems. Nausea will be what keeps you from eating. Radiation: radiation destroys the epithelial cells lining your gastro-intestinal tract. Because you undergo radiation continuously for an extended period of time, the cells of the mucus membrane are never able to replicate quickly enough to fully heal the damaged membrane which in turn develops into mucositis, and eating/nutritional issues develop. Although my mucositis was rough at the end, it only got rough the last 3-4 days of treatment and 1-2 weeks after; it took about 1 ½ months for the mucositis to visibly disappear.
Where the Doctors mistakenly advised me:
In my opinion, and I figured this out just a little too late, do not eat solid food of any kind starting the day you begin radiation treatment. By eating solid food you tear away the mucous membrane of your throat. What you should do is drink super high calorie nutritional shakes and smoothies. This will allow you to fend off mucositis for a longer period of time, increase your quality of life and hopefully prevent you from having to get a feeding tube. Also more importantly, you will be capable of ingesting enough nutrients and calories to help heal during treatment, and maintain your weight. Normally, a 3,000 calorie diet would make just about anyone fat, but it doesn’t do anything against radiation. I drank 3 2,500 – 3,000 calorie shakes/smoothies a day and still lost 37 lbs., although about half was lost the last week of treatment and the first week of recovery when my mucositis was rough. The high calorie/nutrient shakes/smoothies are KEY to prevention and recovery.
In short, here’s the formula to my success and the ingredients I used in my shakes/smoothies; all of the ingredients can be purchased at your grocer, GNC and/or Amazon.
1. Stop eating solid food day 1 of radiation treatment.
2. Drink at least 3 shakes a day to maintain weight.
3. Take a good multi vitamin after each shake.
4. Floss & brush teeth very lightly with extra soft tooth brush after each shake.
5. Rinse lightly using oral rinse (baking soda – salt – water) several (20+) times a day,
6. Do all speech and swallowing rehab exercises as prescribed.
7. Quit all chores and activities.
8. Sleep and rest every possible moment you can.
9. Take Advil every 4 hours as needed, you’ll need it. Pain pills (hydrocodone) didn’t work, so I fought the inflammation instead which helped a lot.
10. Drink water (lots of water). You’re going to do this anyway when your saliva glands stop working, but I wanted to mention it because of its importance.
11. Drink Gatorade to help with your electrolytes. It will taste terrible. Grape was the best for me.
12. Appreciate the people and the little things in your life. You will do this regardless. And when this is all over you’ll feel reborn.
Base for the shakes and smoothies: (1,990 calories)
1-Boost Plus (360 Calories)
1-scoop - Optimum Nutrition 100% Whey Gold Standard (110 Calories), Vanilla or Chocolate
2-cups Ice cream (720), Vanilla or Chocolate
3-tablespoons Viva Naturals MCT Coconut Oil (420)
½-cup egg white: All Whites or Egg Beaters (200)
1-cup Horizan Organic DHS Omega-3 Milk (150)
1-tablespoon Optimum Nutrition Glutamine
2-tablespoons Benefiber (30), you’re going to need this stuff)
Stuff to add to shake base for nutrition and calories:
Wheat Germ (1/4 cup = 180 calories), this was a go-to for me
Oatmeal (1/2 cup = 150 calories) food processor this or it will scratch your throat.
Honey (1 tbls. = 64 calories)
Chocolate Syrup (1 tbls. = 45 calories)
Natural brown sugar (1 tbls. = 50 calories), go-to for me
Natural Peanut Butter (4 tbls. = 400 calories) this was a go-to for me, tasted kinda like peanut butter
Bananas – Blueberries – Raspberries – etc., blend more than normal, bananas were a go-to for me
Throw the base plus whatever else you want with ice as needed or extra milk for consistency in a blender and go. It should blend to about an inch from the top of a regular sized blender.
Other tips:
1. Buy a good cool humidifier. It helps a little with dry mouth.
2. Buy an extra soft toothbrush: Dr. Collins Perio Toothbrush.
3. Do NOT skimp on the quality of the base ingredients: protein, vitamins, Glutamine. If you can get medical grade, that’s even better.
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Need all the support we can get...
My husband (the love of my life, father to 3 our kids and grandfather to 2 beatuiful baby girls) just got home from the Fine Needle Aspiration biopsy. We are crushed, scared and emotionally drained! He noticed a swollen lymph node about a month ago, got it checked out last week. Right tonsil and swollen lymph node are confirmed SCC. We don't yet know if we are dealing with HPV positive or negative. I think that takes a few days. The waiting is horrible, dont know if we're headed for surgery or Rad & Chemo, maybe both? I've decided to stop the Google searches and reach out here. All of this information is new, encouraging. Looking for ways to help him and myself, I feel so helpless and I know he needs more from me.
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I’m glad your radiation isMaryzact said:agree with matt
Hi, just got done with 15 radation treatments, and start the chem on tues. You got this, It was even a tenth of what i thought it was going to be. the swallowing part was, and i just view the weight that i have gained from the steriods i will probally lose during chemo. I think its all 90% attitude and being arround positve people!. I prepare also, but, i just sit and think that theres a reason all this is happening not sure what,, but i havent felt like what was all on google. in fact emotionally and i grown leaps and bounds.I just make little mall goals daily it really helps.Im in florida too, and in my 40 s. . and you are right that needs to be printed on a shirt!!!!!!!!from mat i think.
I’m glad your radiation is done and love your positivity I guess dealing with this you need that outlook more then ever. I also hope chemo goes well for you!! I’m having both radiation and chemo same time. Your right google pardon my language scared the **** out of me and was literally making me say hell no not going through with it. Then I found this site and many fears have been lessened for sure. To hear straight from someone who is dealing with it now or has in the past is a comfort. See how I manage in the weeks to come, but I’m blessed to have amazing family and friends who are my cheerleading team.
Thanks for taking the time to tell me part of your story and God Bless you!!
Charlene
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Wow thank you for all thatGooganK1965 said:YOU GOT THIS!
Hi Charmit, you sound like me just a little over 2 years ago. Everything below is my advice to you. Take it with a grain of salt or as a bible...it's just advice and it worked for me.
To begin:
I was diagnosed April 1, 2016 with stage 3 HPV SCC of the left tonsil and 3 lymph nodes, unfortunately it wasn’t an April Fool’s joke. I was 50 - 5’11’’ 218 lbs. and in otherwise good health. I’ve worked out regularly, and on-and-off for the past 15 years (no steroid use). Mary Bird Perkins and a team of LSU Doctors recommended 35 treatments – no chemo – no surgery. I decided to go with Mary Bird Perkins and LSU (I had 2 other options/opinions as well) but decided on LSU. They all had approximately an 85% success rate, and I wanted as many options as I could get on the back end if radiation didn’t work.
*Keep in mind, everyone’s body is different and everyone heals differently.
Last day of treatment:
Mucositis took over entire throat, uvula, soft palate, tonsils, 50% of hard palate, left side top and bottom of Maxillary tuberosity & vestibules, and left side of tongue front to back. My weight dropped to 181 lbs. (lost 37 lbs.), DRY Mouth, NO feeding tube, and I physically felt very good (besides my mouth), but was radiation-drained tired.
As of today (4-23-2018):
Both my ENT and Oncologist are startled as to how well I’ve done during and after treatment recovery, and say it looks as if I hadn’t even gone through 35 treatments. I have no physical appearances either in my mouth or on my neck. My tongue gets sore from time to time, my neck is a little stiffer, I get the back/neck tingles occasionally, and my mouth is drier than I like, but I am way way better off than most. Almost all my taste is back to normal or a new normal. I use hot sauce, I used to use tons now I just use more than most people. I still lightly struggle with tomato and pickled stuff, but it’s getting better and better each month. I can drink anything: coffee, tea, soda and juices, including beer and alcohol. But, coffee and alcohol (diuretics) make my mouth drier than it normally is.
*Keep in mind, everyone’s body is different and everyone heals differently.
How I got my results and my recommendations:
Listen to your doctor’s advice. They are for the most part highly intelligent (my daughter is one and she’s a smarty), experienced, and you are not their first patient. However, most of them have not gone through what you are about to. In my opinion, they got everything right except the “eat as much “food” as you can”. Let me explain: Nutrition is the best weapon you personally can bring to the fight, but getting enough good calories down can be the hard part. Maintaining your weight is your goal, you will hear it constantly from all the medical professionals. IN MY OPINION, it all comes down to your mucous membrane, and how well you take care of it. Chemo: the side effect of vomiting up stomach acid erodes the lining of your mucous membrane which may cause mucositis. If it develops, it should heal fairly quickly (4 days to a week) and cause you no significant problems. Nausea will be what keeps you from eating. Radiation: radiation destroys the epithelial cells lining your gastro-intestinal tract. Because you undergo radiation continuously for an extended period of time, the cells of the mucus membrane are never able to replicate quickly enough to fully heal the damaged membrane which in turn develops into mucositis, and eating/nutritional issues develop. Although my mucositis was rough at the end, it only got rough the last 3-4 days of treatment and 1-2 weeks after; it took about 1 ½ months for the mucositis to visibly disappear.
Where the Doctors mistakenly advised me:
In my opinion, and I figured this out just a little too late, do not eat solid food of any kind starting the day you begin radiation treatment. By eating solid food you tear away the mucous membrane of your throat. What you should do is drink super high calorie nutritional shakes and smoothies. This will allow you to fend off mucositis for a longer period of time, increase your quality of life and hopefully prevent you from having to get a feeding tube. Also more importantly, you will be capable of ingesting enough nutrients and calories to help heal during treatment, and maintain your weight. Normally, a 3,000 calorie diet would make just about anyone fat, but it doesn’t do anything against radiation. I drank 3 2,500 – 3,000 calorie shakes/smoothies a day and still lost 37 lbs., although about half was lost the last week of treatment and the first week of recovery when my mucositis was rough. The high calorie/nutrient shakes/smoothies are KEY to prevention and recovery.
In short, here’s the formula to my success and the ingredients I used in my shakes/smoothies; all of the ingredients can be purchased at your grocer, GNC and/or Amazon.
1. Stop eating solid food day 1 of radiation treatment.
2. Drink at least 3 shakes a day to maintain weight.
3. Take a good multi vitamin after each shake.
4. Floss & brush teeth very lightly with extra soft tooth brush after each shake.
5. Rinse lightly using oral rinse (baking soda – salt – water) several (20+) times a day,
6. Do all speech and swallowing rehab exercises as prescribed.
7. Quit all chores and activities.
8. Sleep and rest every possible moment you can.
9. Take Advil every 4 hours as needed, you’ll need it. Pain pills (hydrocodone) didn’t work, so I fought the inflammation instead which helped a lot.
10. Drink water (lots of water). You’re going to do this anyway when your saliva glands stop working, but I wanted to mention it because of its importance.
11. Drink Gatorade to help with your electrolytes. It will taste terrible. Grape was the best for me.
12. Appreciate the people and the little things in your life. You will do this regardless. And when this is all over you’ll feel reborn.
Base for the shakes and smoothies: (1,990 calories)
1-Boost Plus (360 Calories)
1-scoop - Optimum Nutrition 100% Whey Gold Standard (110 Calories), Vanilla or Chocolate
2-cups Ice cream (720), Vanilla or Chocolate
3-tablespoons Viva Naturals MCT Coconut Oil (420)
½-cup egg white: All Whites or Egg Beaters (200)
1-cup Horizan Organic DHS Omega-3 Milk (150)
1-tablespoon Optimum Nutrition Glutamine
2-tablespoons Benefiber (30), you’re going to need this stuff)
Stuff to add to shake base for nutrition and calories:
Wheat Germ (1/4 cup = 180 calories), this was a go-to for me
Oatmeal (1/2 cup = 150 calories) food processor this or it will scratch your throat.
Honey (1 tbls. = 64 calories)
Chocolate Syrup (1 tbls. = 45 calories)
Natural brown sugar (1 tbls. = 50 calories), go-to for me
Natural Peanut Butter (4 tbls. = 400 calories) this was a go-to for me, tasted kinda like peanut butter
Bananas – Blueberries – Raspberries – etc., blend more than normal, bananas were a go-to for me
Throw the base plus whatever else you want with ice as needed or extra milk for consistency in a blender and go. It should blend to about an inch from the top of a regular sized blender.
Other tips:
1. Buy a good cool humidifier. It helps a little with dry mouth.
2. Buy an extra soft toothbrush: Dr. Collins Perio Toothbrush.
3. Do NOT skimp on the quality of the base ingredients: protein, vitamins, Glutamine. If you can get medical grade, that’s even better.
Wow thank you for all that insight went and purchased a humidifier tonight and some different flavored ensure shakes to see what I like aslo husband bought me the magic bullet so we can make me drinks.
Can you tell me if you had radiation on both sides or just one?? I’m having it just the left with chemo for 7 weeks....and I pray I manage as well as you have. God Bless yoU and thanks for reaching out to me and all the informative information you shared!!
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He is walking the same path IFaith2018 said:Need all the support we can get...
My husband (the love of my life, father to 3 our kids and grandfather to 2 beatuiful baby girls) just got home from the Fine Needle Aspiration biopsy. We are crushed, scared and emotionally drained! He noticed a swollen lymph node about a month ago, got it checked out last week. Right tonsil and swollen lymph node are confirmed SCC. We don't yet know if we are dealing with HPV positive or negative. I think that takes a few days. The waiting is horrible, dont know if we're headed for surgery or Rad & Chemo, maybe both? I've decided to stop the Google searches and reach out here. All of this information is new, encouraging. Looking for ways to help him and myself, I feel so helpless and I know he needs more from me.
He is walking the same path I am at the moment and although I can’t offer any information I can say google is the worst thing I’ve learned first hand with that. Came here and the people are all supportive and have been where we now are. God Bless you and your husband and I will pray his journey goes well. My treatments of radiation and chemo start next Monday April 30, scared to death but can’t wait for the 7 weeks to be over.
Charlene
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I'm sorry to hear of this.Faith2018 said:Need all the support we can get...
My husband (the love of my life, father to 3 our kids and grandfather to 2 beatuiful baby girls) just got home from the Fine Needle Aspiration biopsy. We are crushed, scared and emotionally drained! He noticed a swollen lymph node about a month ago, got it checked out last week. Right tonsil and swollen lymph node are confirmed SCC. We don't yet know if we are dealing with HPV positive or negative. I think that takes a few days. The waiting is horrible, dont know if we're headed for surgery or Rad & Chemo, maybe both? I've decided to stop the Google searches and reach out here. All of this information is new, encouraging. Looking for ways to help him and myself, I feel so helpless and I know he needs more from me.
I'm sorry to hear of this. That being said, you have come to the right place for unlimited support and guidance. Couldn't agree with you more to stay off of Google!
i am 5 years out from treatment as many of us are. This cancer has gotten really treatable. There are different variations of treatment- I had surgery, chemo and 45 radiation treatments. Some have just one of those, some have 2 and others like me have all 3.
Treatment for me was tough but doable and I made it thru with flying colors. You and Hubby will too.
Let us know what the dr says and we will be here to guide you and support you in any way that we can.
In the meantime, just try very hard to relax. I know I know, easier said than done! But keep in mind that worrying about it will not change the outcome so just enjoy your family and put it as far back in your mind as possible.
If you have questions while you wait, we are here!!
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Neck creamCharmit said:I’m so happy your well and on
I’m so happy your well and on the mend. I have an amazing support group that have encouraged and helped me. One another note they haven’t been where I am or faced what I’m facing so I feel when I talk concerns or fears they aren’t understanding. If that makes sense. It’s a struggle for real because right now it’s the fear of the unknown and I’m the type that needs to know. I am truly finding comfort here cause you all walked this path or are walking this path now. I know we are all different and handle things different but to hear other stories of dealing and coping help.
‘I’m going to ask them next Monday if they can play country music for me. It’s helps my soul and relaxes me. Hoping they say the two Ativan will be good or maybe prescribe something stronger. Hate taking any kind of med but at this point whatever gets me through I’m game. A friend is certifing me for medical marijuana she said it will help with my sleeping, eating and nausea. I am willing to try anything at this point.
Do you have any insight on mouthwash or creams for neck?? And I’m looking forward to June 18th last treatment and hope I come back strong because I’m taking one hell of a beach vacation lol
I used AquaPhor (AP), a lot of it. Buy the big tub. I had bad rad burns across my neck. I put thick layers of AP on and within 3-4 hours I was dry. Glad I did because my neck (outside) healed very nice.
Other advice that comes to mind right now:
- Get an electric blanket, I was cold all the time
- I had to have someone drive me to rad after about #20
- If you get the feeding tube installed, see realfoodblends.com, my insurance paid for this and it was real food. They initially gave me formula that was pure sugar, I would not use it. I mixed 1 cup of milk with each packet of realfoodblends and did 4 packets a day to get 1600 calories.
- For constipation I used Colace stool softener twice a day. I would go days/week without going. But was not eating much.
- Keep a daily diary of everything
- There were so many things, drugs, eating schedule, etc. I made a hourly schedule and it really helped. Especially food/water schedule. Sounds weird but without taste or food cravings and not getting hungry (even after days without food) you don't want/need to eat. After I was dropping weight like crazy fast, my wife helped me create an hourly schedule and I started eating by the clock. Once I started keeping my calorie intake at 1600 a day, things were better. I still eat by the clock four months out, don't crave food.
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Just one side?
I'm surprised.
My Dr said we are nuking all your neck, so no cells escape! I was good with that.
Hair - yes, it grows back
I think somewhere I read, Florida? make sure you put a really good sunblock on, usually, radiation nurses know all the good skin tricks, mine was awesome.
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Hi again Charlene!
Hi again Charlene!
I few tidbits....I used per my Cancer Centers instructions a lotion called Calendula (plant based /healing available at Whole Foods) every four hours front and back of neck during the day, and Aquafor every night. You will need a fresh pillow case every day if you use the Aquafor as it is very greasy. I did this religiously and my radiation burns were very mild and I healed quickly and perfectly with zero scarring. As far as nutrition, another smoothie drink to try that is very high protein and silky smooth on the throat is the Soy Protein drink made by Odwalla. It is in every grocery store and was very easy to swallow. The vanilla was the only flavor for me that did not make me gag. If you end up with a Peg Tube, I would highly recommend using "Liquid Hope" meal replacement for peg tubes. Look it up on Google. My insurance covered it. It is crazy amazing stuff. All natural and plant based with high protein. You will lose your hair in the back of your head guaranteed. You may want to get a short hair cut now...I think mine was coming out in clumps around week three. I felt like a troll doll, but just kept it short. Mine started growing back about 2.5 months after treatment. It came back really curly, so I like it! Also, take immaculate care of your teeth. If you dont have one already, buy a water pik. Use your flouride trays EVERY day.Floss 2-3 times a day as well. Make sure you dont swallow any of the flouride from the trays as it kills all of your good bacteria in your stomach. And take a good Probiotic every day. As far as medications, always ask the pharmasist for the liquid form or under the tongue if available. If not, we used a mortal and pestle to grind up any pills to powder then dissolved them in water. I also found that one of those travel horseshoe shaped pillows to sleep in an elevated postion was incredibly helpful by week 4 when my mucous issue (the worst side effect for sure of my treatment) appeared.
Talk soon. Praying for you!!!
Nancy
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ACS Discussion Boards are the Best!
Charmit, I was just diagnosed on February 28th in Florida. I headed home (Wisconsin) for biopsy and treatment. So, I know where you are at. Tomorrow, I will have 4 weeks of radiation in with 3 to go. I had one chemo and am waiting for my WBCs to come back up for the second. I won’t be having the third chemo as it would be after rads are done due to this delay. I am just fine with that! I come to this discussion board with all my questions. I have found lots of helpful information by just scrolling after doing a key word search. I do have a PEG tube. It is easy to use, but I want to keep eating so I just use it to supplement so that I get enough protein and calories. I have found that cheese omelets (I make them one egg and make two...otherwise it gets cold) go down my sore throat easily. Mac and Cheese with mac cooked soft goes down well. I do a smoothie after most radiation sessions for calories, antioxidents and protein. Custard ice cream is very smooth and also goes down well. I am all about taking care of my mouth. Brush, and floss often. Use the baking soda and salt mouthwash (recipe is on the discussion board) often. Hydrate, hydrate, hydrate. Do your oral exercises. As for side effects, I had thrush (it’s gone). My throat is very sore, but just got prescriptions for it today. I have a very dry mouth, but I am dealing with it. Now, I am researching mucositis on the discussion board. I think that I am doing great at this point. My mantra is one day at a time and lots of others did this and I will, too. Last but not least: I do oil-pulling every morning before I eat. I use organic coconut oil (semi-solid find by the shortening in your grocery store). Put about a tablespoon in your mouth. As it starts to liquify, swish it around in your mouth for as long as you can...about 5 minutes is tops for me. Spit it out into a container. Use the baking soda salt mouth rinse. Spit it into the same container. Never swallow it or spit into the sink. You don’t want to call the plumber. It is like aloe vera for the mouth. It is also an astringent and cleans in between your teeth. My speech pathologist was thrilled when I told her this part of my routine. Good luck! You will do this!!
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Thank you for the suggestionsStrawberry54 said:ACS Discussion Boards are the Best!
Charmit, I was just diagnosed on February 28th in Florida. I headed home (Wisconsin) for biopsy and treatment. So, I know where you are at. Tomorrow, I will have 4 weeks of radiation in with 3 to go. I had one chemo and am waiting for my WBCs to come back up for the second. I won’t be having the third chemo as it would be after rads are done due to this delay. I am just fine with that! I come to this discussion board with all my questions. I have found lots of helpful information by just scrolling after doing a key word search. I do have a PEG tube. It is easy to use, but I want to keep eating so I just use it to supplement so that I get enough protein and calories. I have found that cheese omelets (I make them one egg and make two...otherwise it gets cold) go down my sore throat easily. Mac and Cheese with mac cooked soft goes down well. I do a smoothie after most radiation sessions for calories, antioxidents and protein. Custard ice cream is very smooth and also goes down well. I am all about taking care of my mouth. Brush, and floss often. Use the baking soda and salt mouthwash (recipe is on the discussion board) often. Hydrate, hydrate, hydrate. Do your oral exercises. As for side effects, I had thrush (it’s gone). My throat is very sore, but just got prescriptions for it today. I have a very dry mouth, but I am dealing with it. Now, I am researching mucositis on the discussion board. I think that I am doing great at this point. My mantra is one day at a time and lots of others did this and I will, too. Last but not least: I do oil-pulling every morning before I eat. I use organic coconut oil (semi-solid find by the shortening in your grocery store). Put about a tablespoon in your mouth. As it starts to liquify, swish it around in your mouth for as long as you can...about 5 minutes is tops for me. Spit it out into a container. Use the baking soda salt mouth rinse. Spit it into the same container. Never swallow it or spit into the sink. You don’t want to call the plumber. It is like aloe vera for the mouth. It is also an astringent and cleans in between your teeth. My speech pathologist was thrilled when I told her this part of my routine. Good luck! You will do this!!
Thank you for the suggestions!!! Not going to lie anxiety is through the roof today and Monday vastly approaching...but the quicker it comes I guess the sooner I can get this over. Can I ask is your treatment one or both sides?? Mine is just the left side not sure if that will help lessen the affects?? I picked up my florid trays today and starting them tonight can’t hurt. Also bought a humidifier and a water pik flosser trying to get all my ducks in a row.
Im sorry any of us have to go through this but your right this site helps a lot knowing many have and made it through. I keep thinking June 18 will be my end to the treatment and my new beginning of healing and being grateful I made it. And hope I can then help someone and pay back how many on here helped me. Also hope I’m as well as you on my 4 week mark. I’m so nervous, scared and every other emotion....the fear can I really do this??? The answer is yes I know but how well will I do it. Pain is my worst enemy have a very low toleranc.
Thank you for reaching out to me and God Bless you on the rest of your journey the finish line is vastly approaching!! I will have to fine the recipe for the Water baking soda rinse, many mentioned it but not sure how to make.
God Bless again
Charlene
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Florid trays picked up today,nancytc said:Hi again Charlene!
Hi again Charlene!
I few tidbits....I used per my Cancer Centers instructions a lotion called Calendula (plant based /healing available at Whole Foods) every four hours front and back of neck during the day, and Aquafor every night. You will need a fresh pillow case every day if you use the Aquafor as it is very greasy. I did this religiously and my radiation burns were very mild and I healed quickly and perfectly with zero scarring. As far as nutrition, another smoothie drink to try that is very high protein and silky smooth on the throat is the Soy Protein drink made by Odwalla. It is in every grocery store and was very easy to swallow. The vanilla was the only flavor for me that did not make me gag. If you end up with a Peg Tube, I would highly recommend using "Liquid Hope" meal replacement for peg tubes. Look it up on Google. My insurance covered it. It is crazy amazing stuff. All natural and plant based with high protein. You will lose your hair in the back of your head guaranteed. You may want to get a short hair cut now...I think mine was coming out in clumps around week three. I felt like a troll doll, but just kept it short. Mine started growing back about 2.5 months after treatment. It came back really curly, so I like it! Also, take immaculate care of your teeth. If you dont have one already, buy a water pik. Use your flouride trays EVERY day.Floss 2-3 times a day as well. Make sure you dont swallow any of the flouride from the trays as it kills all of your good bacteria in your stomach. And take a good Probiotic every day. As far as medications, always ask the pharmasist for the liquid form or under the tongue if available. If not, we used a mortal and pestle to grind up any pills to powder then dissolved them in water. I also found that one of those travel horseshoe shaped pillows to sleep in an elevated postion was incredibly helpful by week 4 when my mucous issue (the worst side effect for sure of my treatment) appeared.
Talk soon. Praying for you!!!
Nancy
Florid trays picked up today, water pik I ordered today, will stock up on the cream. And my hair I will have her go shorter next cut in a few weeks, as petty as this sounds that will be a hard part seeeing clumps of my hair but in reality small price to pay for my furture. WHY DOES THIS HAVE TO SUCK SO MUCH???? Tonight I’m terrified and can’t shake it, 5 more days!!! I cried a lot tonight....
Thank you for all the wonderful advice as always y’all will never know how much I appreciate it!!!
God bless and thank you
‘Charlene
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