Just Diagnosed this Month

donnahamblin

Hello Everybody,

My husband Scott found a lump on his left side of his neck in August 2011. After several tests and biopsy we found out it is Squamous Cell Carcinoma Stage IVA. He had surgery to determine where it originated from and it's on his left tonsil. (they did not remove the tonsil) We have met with the radiologist and will meet with the chemotherapy doctor on Monday. His treatments will be for 7 weeks 5 days a week. He is also getting a feeding tube here soon.

Please feel free to comment and give us ANY ADVISE that has helped you or your loved one out during this horrendous time. He also has Parkinson's Disease and struggles with the daily challenges involved with this disease. We both find this site very educational and helpful in what we are about to face.

Thank-You,
Donna

Greend

Same except right tonsil
I'm a 15 year survivor. You are in for a rough but survivable journey. Just always remember that each day treated is one day closer to the end of the anxiety. Lots of great folks on this site.

Denny

bpell0402

Greend said:

Same except right tonsil
I'm a 15 year survivor. You are in for a rough but survivable journey. Just always remember that each day treated is one day closer to the end of the anxiety. Lots of great folks on this site.

Denny

sorry you've joined us
but you've found a great resource for information and support. The superthread is a great source for information.

best advice i have is to take it one day at a time and try to be a little pro-active in tackling some potential side effects. My mother had right tonsil ca and finished radiation in july. i would recommend trying to eat a healthy and balance diet and stay hydrated by drinking lots of water from the beginning. Mom also moisturized her skin heavily even before radiation started and increased her oral care before treatment started as well.

personal tips from our experience, protein shakes and ensures were a godsend and figuring out which ones she liked before treatment started helped. she also bought a water pick which removed food particles from sores in mouth, kept her oral cavity clean and was also soothing. there are many recommended treatments for burns, mouth sores, dry mouth etc. its really trial and error to see which one is the best because everyone is so different. my mother rinsed with aloe in her mouth and found it to be particularly useful in soothing and healing.

the journey was rough but you can do it. it can be more difficult for the caregiver sometimes in my opinion. take it a day at a time and be there for eachother. My moms last treatment was in july and she has recently started to feel like herself again. she still cannot taste much yet.

this is a great place for support, comfort and advice. i think i might have had a breakdown if i didnt find this place.

sweetblood22

Donna
The best advice that I can give you guys, is to take one day at a time and keep a positive attitude. Also, check out the links on the Superthread, if you haven't yet. It's chockfull of need to know information.


HNC  SUPERTHREAD

donnahamblin

Greend said:

Same except right tonsil
I'm a 15 year survivor. You are in for a rough but survivable journey. Just always remember that each day treated is one day closer to the end of the anxiety. Lots of great folks on this site.

Denny

Thank you for the advise Denny
Thank you for the advise Denny. It's good to hear you are a 15 year survivor! It gives me great hope.......Congrats!

donnahamblin

bpell0402 said:

sorry you've joined us
but you've found a great resource for information and support. The superthread is a great source for information.

best advice i have is to take it one day at a time and try to be a little pro-active in tackling some potential side effects. My mother had right tonsil ca and finished radiation in july. i would recommend trying to eat a healthy and balance diet and stay hydrated by drinking lots of water from the beginning. Mom also moisturized her skin heavily even before radiation started and increased her oral care before treatment started as well.

personal tips from our experience, protein shakes and ensures were a godsend and figuring out which ones she liked before treatment started helped. she also bought a water pick which removed food particles from sores in mouth, kept her oral cavity clean and was also soothing. there are many recommended treatments for burns, mouth sores, dry mouth etc. its really trial and error to see which one is the best because everyone is so different. my mother rinsed with aloe in her mouth and found it to be particularly useful in soothing and healing.

the journey was rough but you can do it. it can be more difficult for the caregiver sometimes in my opinion. take it a day at a time and be there for eachother. My moms last treatment was in july and she has recently started to feel like herself again. she still cannot taste much yet.

this is a great place for support, comfort and advice. i think i might have had a breakdown if i didnt find this place.

bpell0402, thank you for
bpell0402, thank you for taking the time to comment. Glad to hear your mom is starting to feel like herself again. These are all really great tips to help us out as we begin this journey. Take Care, Donna

Skiffin16

Welcome Donna
Some similarities to your hubby...

STGIII SCC HPV+ Right Tonsil (primary) and a lymphnode (secondary) on the same side.

Tonsils were removed. I didn't have the PEG though.

Sixteen weeks of chemo nine were in three week cycles (Cisplatin, Taxotere and 5FU (thru a port and pump).

Then seven weeks of concurrent chemo/rads...weekly Carboplatin and 35 daily rads.

Diasgnosed in January 2009, treatment complete June 2009...all scans have been clean and clear.

You'll find tons of information here and some great people as well.

Thoughts & Prayers,
John

Hondo

Hi Donna

Welcome to the family here on CSN. Sorry to hear the news but many of us here know what it is like and will do all we can to help. Also I know about the Parkinson’s my Sister has had it for many years now and she too struggles with everyday life.

Take care
Hondo

Kent Cass

Hondo said:

Hi Donna

Welcome to the family here on CSN. Sorry to hear the news but many of us here know what it is like and will do all we can to help. Also I know about the Parkinson’s my Sister has had it for many years now and she too struggles with everyday life.

Take care
Hondo

Donna
Another Welcome from me. Keep Sweet's Superthread in mind for info access, and don't hesitate to ask questions/express concerns. I was NPC, like Hondo, and not Tonsil, but others here are Tonsil, and we're all here to help.

We are a family of Survivors, Donna. Hondo's got around 8-years going, and there's others with many more than that. Scott needs to not only know he will survive this- that knowing can take one to actually believing without any doubt, and that leads to the ability to keep it in the Positive thru all the treatment ordeal. Yes, it do get a bit rough for most all of us, but your C med team will help with meds to make it okay- you and Scott do have to let them know when it is getting rough, though, and then they'll help. And as for the PEG (don't ask Skiffin/John about, as he's TOTALLY useless!)- got mine before treatment started, and not only have no regrets- I still regard my PEG as a blessing.

The many of us who are done with treatment are here to help and provide testimony that H&N C is a winnable fight, and life after treatment ranges from good to very good to AWESOME! I'm only 2+-years, and I fall into one of those catagories. As I like to say, tell Scott this C he has is not gonna kill him- so tell him to get used to it! Being an untypical time in your lives, perhaps you can think of it in terms of your history. Down the road, perhaps you will think of it in those terms. Scott's gonna be okay, Donna. This is 2011, and our C can be beat- as Scott is about to prove to you.

Believe

kcass

Dan Garrett

I haven't been on this

I haven't been on this discussion board in a long time but I hope I can give you some information you are looking for. September 2009, I thought I had a sinus infection that would not go away. After a scheduled visit with my primary physician because of swelling below my right ear he scheduled an ultra sound 2 days later. The ultra sound was inconclusive and an appointment with an ear nose throat was scheduled for a fine needle aspiration that also came back inconclusive. He then scheduled a small biopsy on my parotid gland and it came back positive and I was diagnosed with squamous cell carcinoma in November 2009. After a tonsilectamy (2 days before Thanksgiving:( , and an exam by a dermatologist for possible skin cancer,a primary source was not discovered. After a pet scan and consultations with my ear nose throat doctor ( he ruled against surgery because of the location),my radiation and chemotherapy doctors they decided on the best treatment plan.
Beginning in December 2009 I began Chemotherapy (5 treatments) with Cisplatin being the lead chemo drug with 2 other chemo drugs every three weeks. Cisplatin is pretty rough but I never got nausea. In March I began 35 radiation treatments, 5 days a week for 7 weeks. After treatments my pet scan was clean and I have had a CT every 6 months since then with all being clean.
My primary physician told me he has a patient that had the same cancer 17 years ago so that gives me hope that I got this licked. I also have a friend who had this cancer and has been cancer free for 10 years now. I will check back now then if you want and answer any other questions you may have. I hope this information is helpful. God Bless

I posted this to ChristineM 10/15/2011 and copied and pasted to you.

donnahamblin

Skiffin16 said:

Welcome Donna
Some similarities to your hubby...

STGIII SCC HPV+ Right Tonsil (primary) and a lymphnode (secondary) on the same side.

Tonsils were removed. I didn't have the PEG though.

Sixteen weeks of chemo nine were in three week cycles (Cisplatin, Taxotere and 5FU (thru a port and pump).

Then seven weeks of concurrent chemo/rads...weekly Carboplatin and 35 daily rads.

Diasgnosed in January 2009, treatment complete June 2009...all scans have been clean and clear.

You'll find tons of information here and some great people as well.

Thoughts & Prayers,
John

JOHN, Thank you for your
JOHN, Thank you for your comment and I am so glad your scans have all been clean and clear. We are a little nervous about what we are about to face and feel blessed to have found this site. I wish you continued clear scans and hope we are just as blessed as you have been:-)
Donna

donnahamblin

Kent Cass said:

Donna
Another Welcome from me. Keep Sweet's Superthread in mind for info access, and don't hesitate to ask questions/express concerns. I was NPC, like Hondo, and not Tonsil, but others here are Tonsil, and we're all here to help.

We are a family of Survivors, Donna. Hondo's got around 8-years going, and there's others with many more than that. Scott needs to not only know he will survive this- that knowing can take one to actually believing without any doubt, and that leads to the ability to keep it in the Positive thru all the treatment ordeal. Yes, it do get a bit rough for most all of us, but your C med team will help with meds to make it okay- you and Scott do have to let them know when it is getting rough, though, and then they'll help. And as for the PEG (don't ask Skiffin/John about, as he's TOTALLY useless!)- got mine before treatment started, and not only have no regrets- I still regard my PEG as a blessing.

The many of us who are done with treatment are here to help and provide testimony that H&N C is a winnable fight, and life after treatment ranges from good to very good to AWESOME! I'm only 2+-years, and I fall into one of those catagories. As I like to say, tell Scott this C he has is not gonna kill him- so tell him to get used to it! Being an untypical time in your lives, perhaps you can think of it in terms of your history. Down the road, perhaps you will think of it in those terms. Scott's gonna be okay, Donna. This is 2011, and our C can be beat- as Scott is about to prove to you.

Believe

kcass

Kent....
I do believe and he will prove it to me I know he will. He is very strong willed. I just need to keep my spirits up for him most of all. We have a wonderful family support system and for that I am so grateful.

Why do you consider your PEG as a blessing if you don't mind me asking. Scott is a little bit nervous about it. Thanks you again and hope to hear from you soon:-)

Many thanks! Donna

donnahamblin

Dan Garrett said:

I haven't been on this

I haven't been on this discussion board in a long time but I hope I can give you some information you are looking for. September 2009, I thought I had a sinus infection that would not go away. After a scheduled visit with my primary physician because of swelling below my right ear he scheduled an ultra sound 2 days later. The ultra sound was inconclusive and an appointment with an ear nose throat was scheduled for a fine needle aspiration that also came back inconclusive. He then scheduled a small biopsy on my parotid gland and it came back positive and I was diagnosed with squamous cell carcinoma in November 2009. After a tonsilectamy (2 days before Thanksgiving:( , and an exam by a dermatologist for possible skin cancer,a primary source was not discovered. After a pet scan and consultations with my ear nose throat doctor ( he ruled against surgery because of the location),my radiation and chemotherapy doctors they decided on the best treatment plan.
Beginning in December 2009 I began Chemotherapy (5 treatments) with Cisplatin being the lead chemo drug with 2 other chemo drugs every three weeks. Cisplatin is pretty rough but I never got nausea. In March I began 35 radiation treatments, 5 days a week for 7 weeks. After treatments my pet scan was clean and I have had a CT every 6 months since then with all being clean.
My primary physician told me he has a patient that had the same cancer 17 years ago so that gives me hope that I got this licked. I also have a friend who had this cancer and has been cancer free for 10 years now. I will check back now then if you want and answer any other questions you may have. I hope this information is helpful. God Bless

I posted this to ChristineM 10/15/2011 and copied and pasted to you.

Dan
It is so good to know how well cancer can be beat! Your words have been very encouraging and I wish you continued clean checkups. Everyone has been very helpful. I think it's the not knowing what to expect next that scares me the most. We will beat this I am sure of it. I just can't stand to see my husband suffer or in any pain. Thank you for your comment and take care:-) Donna

CajunEagle

donnahamblin said:

Dan
It is so good to know how well cancer can be beat! Your words have been very encouraging and I wish you continued clean checkups. Everyone has been very helpful. I think it's the not knowing what to expect next that scares me the most. We will beat this I am sure of it. I just can't stand to see my husband suffer or in any pain. Thank you for your comment and take care:-) Donna

Good Morning, Donna
Two years ago, I went through the treatment for Left Tonsil cancer (stage 4).....with the peg tube....Cisplatnin....Radiation...worry..worry that you guys are going to go through. It's tough, but it "WILL" be done. It's great to read that you have a wonderful support system set up, but my advice is don't be afraid to use them. When people say, "How can I help"? or "Let me know if I can doing anything.".......then tell them they will be called upon. You are going to need a break after a while in dealing with all that is coming up. Also, we set up a daily log during treatment that notes the ongoing events ( weight loss....meds taken...foods attempted...general attitude...etc.). You'll find that it's helpful as you get towards the end of treatment. It was also used to take notes when going to soooooo many Doctors, and questions that you need answers. He'll make it.

Larry

MarineE5

PEG Tube
Donna,

The PEG Tube was a Blessing for me also. To touch on your question. Scott will more then likely be able to eat orally for the first few weeks of treatment as the side affects of the Radiation and Chemo are accumlative. So the mouth sores and sores in his throat won't effect his swallowing until week 3 or 4. This is the turning point that many Doctors worry about.

As Scott has more difficulty eating, the weight drops off and as many of us have done, become weaker. We need the nutrition and calories to keep our energy up. That is where the PEG Tube plays such a big part in this. There has been many that did not use the PEG Tube and did well. But, in my case, I had no choice as I had part of my tongue removed and had the PEG installed early.

A side note, take Scott's current weight or the weight that he would like to be and multiply it by 12 and that is the number of calories he needs to take in each day to maintain that weight. Example- 200lbs X 12 = 2,400 calories each day. This can be done easily by the number of cans of nutrition he puts in thru the Tube. Important note, he must try to swallow something each day as to not lose the swallow motion. Sips of water will do, hopefully, he will be able to sip some soup as well. He may do better then expected and combine oral eating with cans of nutrition.

I am glad you found this site as you have already met many that have " Walked the Walk" and know what they speak of. I am sorry that you and Scott had to search for such a site, but both of you will make it. I will mention again as others have done above, take a peak at the Super Thread that has allot of information in it. If you don't find what you need to know right away, post your question, someone more then likely will have the answer.

My Best to Both of You and Everyone Here

Skiffin16

donnahamblin said:

Kent....
I do believe and he will prove it to me I know he will. He is very strong willed. I just need to keep my spirits up for him most of all. We have a wonderful family support system and for that I am so grateful.

Why do you consider your PEG as a blessing if you don't mind me asking. Scott is a little bit nervous about it. Thanks you again and hope to hear from you soon:-)

Many thanks! Donna

PEG
LOL, I'm sure Kent is just teasing with me concerning the PEG..

Discussions have been beaten to death on here over time. Mainly if EVERYONE should get the PEG, or actually whether it should be required and mandatory...LOL.

I think for the most part we have all reached an understanding. For most it's a good thing, for some it absolutely is a must, but for a few we have made it through everything treatment wise as those with the extensive treatment, and did it just fine without a PEG.

The ones that didn't have a PEG, didn't refuse it. It simply wasn't recommended or suggested, so we didn't have one.

I would highly suggest that you do what your MD's advise, they are the experts.

Now on rare occasions there have been a few on here that already had issues, weigh next to nothing and their MD's didn't suggest a PEG...that call would/should definitely be challenged.

Best,
John

buzz99

Just diagnosed
I well remember that "deer in the headlights" feeling we had a year ago when Buzz was diagnosed and know how you must be feeling. This forum can be a real blessing as you endure the treatment. The PEG tube literally saved Buzz's life. Stay ahead of the nausea from the chemo by giving the anti-nausea meds before the symptoms appear. Call the doctor if you have any concerns. I made the mistake of trying to manage on my own then Buzz ended up in the hospital a week after his first chemo. There are a multitude of challenges which you will encounter and this forum can be invaluable. Karen

sweetblood22

MarineE5 said:

PEG Tube
Donna,

The PEG Tube was a Blessing for me also. To touch on your question. Scott will more then likely be able to eat orally for the first few weeks of treatment as the side affects of the Radiation and Chemo are accumlative. So the mouth sores and sores in his throat won't effect his swallowing until week 3 or 4. This is the turning point that many Doctors worry about.

As Scott has more difficulty eating, the weight drops off and as many of us have done, become weaker. We need the nutrition and calories to keep our energy up. That is where the PEG Tube plays such a big part in this. There has been many that did not use the PEG Tube and did well. But, in my case, I had no choice as I had part of my tongue removed and had the PEG installed early.

A side note, take Scott's current weight or the weight that he would like to be and multiply it by 12 and that is the number of calories he needs to take in each day to maintain that weight. Example- 200lbs X 12 = 2,400 calories each day. This can be done easily by the number of cans of nutrition he puts in thru the Tube. Important note, he must try to swallow something each day as to not lose the swallow motion. Sips of water will do, hopefully, he will be able to sip some soup as well. He may do better then expected and combine oral eating with cans of nutrition.

I am glad you found this site as you have already met many that have " Walked the Walk" and know what they speak of. I am sorry that you and Scott had to search for such a site, but both of you will make it. I will mention again as others have done above, take a peak at the Super Thread that has allot of information in it. If you don't find what you need to know right away, post your question, someone more then likely will have the answer.

My Best to Both of You and Everyone Here

PEG Tube
I had one as well, and it saved my life for sure.

Good recommendation on the calorie intake, as Marine said. Keep in mind that you may need even more calories than that, depending on how your body is doing. I was only 120 lbs, and I was taking in 2,000 to 2,400 calories a day, and I basically only maintained my weight through radiation. (it was after radiation, that I had problems and dropped all the weight) Always check with your nutritionist and monitor weight, and keep in mind that you may need to bump up the calories when your body is under the extreme and stressful conditions. I kept a journal of all calories, water, and fibre and potassium I put in every day, so I made sure I was getting what I needed.

donnahamblin

Skiffin16 said:

PEG
LOL, I'm sure Kent is just teasing with me concerning the PEG..

Discussions have been beaten to death on here over time. Mainly if EVERYONE should get the PEG, or actually whether it should be required and mandatory...LOL.

I think for the most part we have all reached an understanding. For most it's a good thing, for some it absolutely is a must, but for a few we have made it through everything treatment wise as those with the extensive treatment, and did it just fine without a PEG.

The ones that didn't have a PEG, didn't refuse it. It simply wasn't recommended or suggested, so we didn't have one.

I would highly suggest that you do what your MD's advise, they are the experts.

Now on rare occasions there have been a few on here that already had issues, weigh next to nothing and their MD's didn't suggest a PEG...that call would/should definitely be challenged.

Best,
John

John, LOL
He is getting the PEG per the doctors advice and our initial goal will be that he won't have to use it. It's good to know that some people didn't have to use one and did fine without one. Kudos! It will just be there just in case. He currently weighs 170 and is 5'10 and all muscle. No fat on him at all. They don't want him to loose any weight if at all possible~

donnahamblin

CajunEagle said:

Good Morning, Donna
Two years ago, I went through the treatment for Left Tonsil cancer (stage 4).....with the peg tube....Cisplatnin....Radiation...worry..worry that you guys are going to go through. It's tough, but it "WILL" be done. It's great to read that you have a wonderful support system set up, but my advice is don't be afraid to use them. When people say, "How can I help"? or "Let me know if I can doing anything.".......then tell them they will be called upon. You are going to need a break after a while in dealing with all that is coming up. Also, we set up a daily log during treatment that notes the ongoing events ( weight loss....meds taken...foods attempted...general attitude...etc.). You'll find that it's helpful as you get towards the end of treatment. It was also used to take notes when going to soooooo many Doctors, and questions that you need answers. He'll make it.

Larry

Larry
Great advise! I actually bought a small 6 by 6 notebook and started documenting from day 1 his doctor appointments etc. He's had 10 total and no treatment started yet. It's exhausting. I will definaetly keep up with the day to day events and take notes for sure. We both have been pretty independant most of our adult lives and it's hard to ask for help even when it's been offered to us but I will for sure. Many people are asking to help already and it's so appreciated. Thanks for your support. We can do this!

donnahamblin

MarineE5 said:

PEG Tube
Donna,

The PEG Tube was a Blessing for me also. To touch on your question. Scott will more then likely be able to eat orally for the first few weeks of treatment as the side affects of the Radiation and Chemo are accumlative. So the mouth sores and sores in his throat won't effect his swallowing until week 3 or 4. This is the turning point that many Doctors worry about.

As Scott has more difficulty eating, the weight drops off and as many of us have done, become weaker. We need the nutrition and calories to keep our energy up. That is where the PEG Tube plays such a big part in this. There has been many that did not use the PEG Tube and did well. But, in my case, I had no choice as I had part of my tongue removed and had the PEG installed early.

A side note, take Scott's current weight or the weight that he would like to be and multiply it by 12 and that is the number of calories he needs to take in each day to maintain that weight. Example- 200lbs X 12 = 2,400 calories each day. This can be done easily by the number of cans of nutrition he puts in thru the Tube. Important note, he must try to swallow something each day as to not lose the swallow motion. Sips of water will do, hopefully, he will be able to sip some soup as well. He may do better then expected and combine oral eating with cans of nutrition.

I am glad you found this site as you have already met many that have " Walked the Walk" and know what they speak of. I am sorry that you and Scott had to search for such a site, but both of you will make it. I will mention again as others have done above, take a peak at the Super Thread that has allot of information in it. If you don't find what you need to know right away, post your question, someone more then likely will have the answer.

My Best to Both of You and Everyone Here

MarineE5
Thanks for the great information. Every bit of the information will help us out tremendously. Scott has been getting on here and reading everything as well. He weighs 170 so he should get 2,040 calories per day if I did my math correct. Didn't know that but now I do~ We don't want him to loose any if at all possible!!! Thanks Much:-)