Diagnosed last Monday (Squamous Cell -throat cancer)

Chefdaddy

Skiffin16 said:

SCC Tonsil Cancer ~ One Year Out
I was diagnosed last January 2nd with SCC also. HPV related, it was primary in my right tonsil and a secondary lymph node on the same side of my neck slightly behind the ear and lower.

My cancer started off as a small irritation in my throat, nothing bad just annoying I guess. But after a month or so it persisted, not really getting worse. After seeing my general MD and doing some antibiotics, I consulted an ENT.

From the very first he suspected SCC and ordered a CT that afternoon. Later in the day (which was a Friday) he was certain I had SCC in my tonsil. By that time I also had a small lump on the side of my throat behind the ear and lower.

This was all very devastating to say the least as I'm never sick. I have never smoked or used tobacco. This made the ENT suspect of HPV which eventually that was the diagnosis for the origin. Good thing is that HPV related cancer tends to respond better to treatment.

As I'm 55 and in very good health (a bit over weight), the treatment was started very soon.

I started first with three 3 week cycles of Cisplatin, Taxotere, and 5-FU on Mondays. The 5-FU was administered via a pump 24/7 ending on Thursday night. The following two weeks were recover time.

After that nine weeks, I started seven weeks of Carboplatin every Monday and 35 daily doses of Radiation. Each day before the radiation I was injected in my abdomen with Amifostine to help retain some salivary function (not sure how well that actually worked).

I completed my treatments the 19th of June 2009. My first PET scan in the later part of August showed no signs of the cancer, no signs of the tumor.....maintenance mode now with regular visits and check-ups every 6 - 8 weeks.

One year since initial diagnosis;

So far all of my scans have came back good, and my blood work is also good. Last labs showed my WBC and RBC still just a hair under low normal, but I expect that to be back in range for my next labs in early March.

I have regained a lor of my taste back, but it's not like it was before. It's my new normal taste as I've heard. A few things aren't anything like before, but overall a lot is similar, just not as intense. I can definitely survive with my current taste and food is enjoyable.

My salivary function is still lacking, but is improved frm how it initially was in June. This winter coldness and using the heat in the house makes it bad in the mornings and during the night, but a small bottled water by the bed helps with a sip now and then.

Best of luck to you and prayers for your future success, it's rough, but you can do it...

Regards and God Bless,
John

Hello John,
I had written a
Hello John,

I had written a reply to your post but for some reason it did not get posted.

I surely did not want you to think I ignored your post or your wonderful support.

I'm two years older than you and I'm praying that I will be able to share in the success of beating this, as you have.

As you can tell from the "user" name that my kids picked out for me that they like my cooking, so the ability to continue tasting food is a concern for me.

Cooking for my son is a challenge, as his daily regimen of Chemo really messes with his taste buds, on one day he will love a certain food and the next day it turns his stomach.

I just realized I had forgot to ask the oncologist if the Erbitux will do anything to my tasting or handling food.

Thank you for your great input and support John.

Keep up the great work!

You're in my prayers

Chefdaddy

Hondo

Chefdaddy said:

Hi Hondo
Great to hear from
Hi Hondo

Great to hear from you again!

I just had a little scare while shopping at the local grocery store and thought I was going to pass out. Started feeling dizzy and weird all over so we headed home and I checked my blood sugar and it had jumped to 374. Since removing my lymph node and the several times I've been in the hospital since, they have not been able to get my blood sugar under control.
Before they released me last week they had switched me from one type of insulin to another. I just got off the phone with my ENT physician at the hospital and they just changed the dosage along with the amount for the "each meal" injection. They told me to have a glass of juice nearby in case they were off on the amount.....Gee, thanks guys lol

I'm so blessed to have all of you here to support me, thank you for all your support and prayers.

Chefdaddy Mike

Daddy Mike
They told you to have a glass of juice nearby in case they were off on the amount! You got to be joking; I do wonder sometimes about our doctors. Anyway I am just glad you are OK and yes here on CSN we are all blessed because of the support and love we all share, it is like one very big family.

I just hope and pray that someday we can all meet in one big CSN family reunion. Take can my friend and may God continue to be with you.

I don’t mind still being in Gods workshop because I want to be where He is.

Skiffin16

Chefdaddy said:

Hello John,
I had written a
Hello John,

I had written a reply to your post but for some reason it did not get posted.

I surely did not want you to think I ignored your post or your wonderful support.

I'm two years older than you and I'm praying that I will be able to share in the success of beating this, as you have.

As you can tell from the "user" name that my kids picked out for me that they like my cooking, so the ability to continue tasting food is a concern for me.

Cooking for my son is a challenge, as his daily regimen of Chemo really messes with his taste buds, on one day he will love a certain food and the next day it turns his stomach.

I just realized I had forgot to ask the oncologist if the Erbitux will do anything to my tasting or handling food.

Thank you for your great input and support John.

Keep up the great work!

You're in my prayers

Chefdaddy

Posting
No worries on the posting, been there done that. I've written long replies before, only to post it and it's not there and I can't remember what I posted..LOL.

Glad you are doing well and any information I can share or contribute I more than generously will do.

Tim (Hondo) hope all is going well with you and your wife. How's your son doing....? Let me know when you make it back to Tampa again, we'll do dinner at Shells again if you like.

John

Hondo

Skiffin16 said:

Posting
No worries on the posting, been there done that. I've written long replies before, only to post it and it's not there and I can't remember what I posted..LOL.

Glad you are doing well and any information I can share or contribute I more than generously will do.

Tim (Hondo) hope all is going well with you and your wife. How's your son doing....? Let me know when you make it back to Tampa again, we'll do dinner at Shells again if you like.

John

Hi John

The Son is starting school today, so 2 ½ years from now he should finish. I must say Tampa is a beautiful place can’t wait to go back again. I like the food at Shells, you should have a lot more of your taste back by now so the next time we go it should be great for all of us.

Take care John and thanks for being a friend, God bless and keep you.

Skiffin16

Hondo said:

Hi John

The Son is starting school today, so 2 ½ years from now he should finish. I must say Tampa is a beautiful place can’t wait to go back again. I like the food at Shells, you should have a lot more of your taste back by now so the next time we go it should be great for all of us.

Take care John and thanks for being a friend, God bless and keep you.

Good to hear
Good to hear the news on your son...

Food does taste better than when you and I met, it was really early out for me then. But I'm not one for lack of trying, LOL, I love food too much to not keep trying different things.

I do miss a few things that just haven't seemed to return (as of yet), but the things that do taste good I'm very thankful for. I read so many on here that hate food and how disappointed they are.

After being on pain meds just to drink water and Ensure Plus for several weeks, Im sooo glad I have the taste that I do.

Good having met you and staying in touch as well....

John

Chefdaddy

Skiffin16 said:

Good to hear
Good to hear the news on your son...

Food does taste better than when you and I met, it was really early out for me then. But I'm not one for lack of trying, LOL, I love food too much to not keep trying different things.

I do miss a few things that just haven't seemed to return (as of yet), but the things that do taste good I'm very thankful for. I read so many on here that hate food and how disappointed they are.

After being on pain meds just to drink water and Ensure Plus for several weeks, Im sooo glad I have the taste that I do.

Good having met you and staying in touch as well....

John

Hi John,
It's a pleasure
Hi John,

It's a pleasure for me as well!

Today we spent most of the day at the children's hospital while my son was sedated for his every third month spinal infusion of Methotrexate(chemo). Afterwards, we stopped at an Italian restaurant, as my son was hungry for Fettuccine Alfredo with chicken after fasting since yesterday. He ate only a few pieces of the chicken and then told me that it tasted bad and his stomach was sick and so it got boxed up and we left for home. . On the way home he named off several other foods that he thought would be good as we passed various restaurants(the very same foods that he hated last time we were out).

I feel bad for him because he's not playing a game, you can tell by the look of disappointment on his face when he starts eating something he really wanted and then it quickly turns him inside out. It makes him very sad and then he starts apologizing to me. He knows money is really tight and he feels guilty, I immediately stop him and remind him that we both know it's the chemo that's messing with him.

He's really looking forward to April when it's all over with, Lord willing.

I was going to mention that I found in one of those large "bag your own" grocery stores (Winco Foods) a tofu dessert product that I really enjoy. The fruit flavors are great and it's inexpensive. It's produced by Sunrise Soya Foods Vancouver BC, Canada.

The flavors I've found so far are Peach Mango, Banana and Coconut. They are very soft, softer than jell-o and they really soothe the throat. If someone gave you a bite you would never know they are made from tofu unless they told you. For making smoothies, popcycles and other recipes they have a toll free number 1-800-661-BEAN.
Their website is www.sunrise-soya.com

There have been several times that this was the only thing I could eat.

My kids and I have made an agreement the other night, that when my son and I get through and beat this, we (the three of us) decided that we are going to get an RV and travel the USA. It would be really nice to get to stop, meet and personally thank everyone that has helped us get through all of this.

Thank you again John for being here and being a good friend.

Chefdaddy Mike

Chefdaddy

Hondo said:

Daddy Mike
They told you to have a glass of juice nearby in case they were off on the amount! You got to be joking; I do wonder sometimes about our doctors. Anyway I am just glad you are OK and yes here on CSN we are all blessed because of the support and love we all share, it is like one very big family.

I just hope and pray that someday we can all meet in one big CSN family reunion. Take can my friend and may God continue to be with you.

I don’t mind still being in Gods workshop because I want to be where He is.

Hi Hondo,
If you read my
Hi Hondo,

If you read my message to John (Skiffin 16) you will see the kids and my "new" plan.
One of the first places I would like to travel to is your area. It's been 29 years since I was working there for a few weeks and I have never forget the awesome hospitality from all the locals and I have really missed those Po'boys from Winn Dixie!

Have a blessed day brother

Your friend

Chefdaddy Mike

Hondo

Chefdaddy said:

Hi Hondo,
If you read my
Hi Hondo,

If you read my message to John (Skiffin 16) you will see the kids and my "new" plan.
One of the first places I would like to travel to is your area. It's been 29 years since I was working there for a few weeks and I have never forget the awesome hospitality from all the locals and I have really missed those Po'boys from Winn Dixie!

Have a blessed day brother

Your friend

Chefdaddy Mike

Daddy Mike

Anytime you are ready come on down my friend, I meet John in Tampa a few months ago we had a great time eating at Shells his taste was just starting to come back. Sorry but there are very few Winn-Dixie’s here anymore but still a lot of very good Po’boys places

Trust in the Lord with all of your heart and lean not unto they own understand but in all your ways acknowledge him and he shall direct your path.

Take care Mike and God bless

PrimaryX3

Chefdaddy said:

Dearest Theresa,
Thank you
Dearest Theresa,

Thank you for your kind and supportive words.

I am so very happy to hear of your success in your long 14 month journey.
God is so very good!

Thank you for all your prayers for my family Theresa.

My son uses a wheelchair if we are going to walk any further than 30 feet, or, if he's going to be on his feet for more than 10 minutes. He has been able to stop using his walker while in our home. He uses the walker to get to the car. He no longer has the fatty tissue between the skin at the bottom of his feet and the bones, so standing is very limited as there is no cushion. Once he gets past the leukemia and off the chemo they might do additional constructive surgery to correct that.

It was humbling to hear my son praying for me when I was going through so much, knowing he is in chronic pain and dealing with so much himself. I do love my children and thank God that they love and trust Him!

I am a very blessed father.

May God richly bless you and yours my dear.

Sincerely

Chefdaddy Mike

Your Story ...
.... is such an inspiration. I pray for you and your son every morning and know that God will keep the both of you safe. Your son is a very special young man. I am sure he gets that from his dad.
Please keep posting because, selfishly, I want to know how you and your boy are doing. I'm about to take my daily walk and I will say some extra prayers as I'm doing it for both of you to remain strong through your treatments.
Be well and know how much we care for you.
Theresa

Chefdaddy

PrimaryX3 said:

Your Story ...
.... is such an inspiration. I pray for you and your son every morning and know that God will keep the both of you safe. Your son is a very special young man. I am sure he gets that from his dad.
Please keep posting because, selfishly, I want to know how you and your boy are doing. I'm about to take my daily walk and I will say some extra prayers as I'm doing it for both of you to remain strong through your treatments.
Be well and know how much we care for you.
Theresa

Hi Theresa,
It's good to
Hi Theresa,

It's good to hear from you again.

Thank you so very much for your prayers and your very kind words.

I can't argue with you about him being a special young man, he's much tougher than me.

When I finally got custody of him after a long search with law enforcement, he was frail, sickly and was terrified. He had been so brainwashed and abused that he would not call me anything else but "my mom's ex husband". With God's help, he soon realized he had been told vicious lies about me, his family and his sister. He now he calls me "Pops" and he and his older sister are back to being best buddies, like they were five years ago before their nightmare began with their mother and her new child abusing boyfriend. My daughter went through the same physical and mental abuse, but because there were several police arrests of the boyfriend for attacking and hurting my daughter and violating a No Contact Order it was much easier to get custody of her. In my son's case, no one ever called the police on his behalf, so it was much more difficult to establish there was an "immediate danger" to the court, but his sister boldly testified to several judges on his behalf and they believed her testimony. I am so very proud of her.

Please keep her in your prayers as well, the day I told the kids that I had been diagnosed with cancer again, she told me that her stomach started hurting and that it hasn't stopped since. Yesterday, while my son was getting his treatment I was able to schedule her to be seen by another doctor at the same hospital and then we learned she has an ulcer. It turned out that the doctor was one of the Resident doctors that was working with my son in oncology when he was first diagnosed three years ago. It was a very nice reunion for my daughter, as she got to share with the lady doctor for the first time of the abuse she had been going through back when she was with her mother and couldn't tell anyone.

It's amazing how evil against children can hide it's ugly face while muting the children.

Thankfully, God sent my kids an excellent councilor that has been extremely helpful.

I pray for you as well my dear.

Keep up the great work.

Chefdaddy Mike

Skiffin16

Chefdaddy said:

Hi Hondo,
If you read my
Hi Hondo,

If you read my message to John (Skiffin 16) you will see the kids and my "new" plan.
One of the first places I would like to travel to is your area. It's been 29 years since I was working there for a few weeks and I have never forget the awesome hospitality from all the locals and I have really missed those Po'boys from Winn Dixie!

Have a blessed day brother

Your friend

Chefdaddy Mike

Road Trip
Sounds like a plan, LOL....

I'm always up for adventures, and love the low lands of La....I've eaten plenty of Crawfish and Boudin, chased by a Corona down around Cameron....sittin on a house boat catchin shrimp in the butterfly nets as the tide moves, oh the memories.

If you ever get to Florida and near Tampa or Orlando, look me up for sure.

Continue to improve and make plans, positive thinking is a good thing. All the negatives of treatment will be a thing of the past before you know it. Only the positives or your treatments will endure.

Besides, if we would had never gotten sick, we'd not met each other....

John

Chefdaddy

Skiffin16 said:

Road Trip
Sounds like a plan, LOL....

I'm always up for adventures, and love the low lands of La....I've eaten plenty of Crawfish and Boudin, chased by a Corona down around Cameron....sittin on a house boat catchin shrimp in the butterfly nets as the tide moves, oh the memories.

If you ever get to Florida and near Tampa or Orlando, look me up for sure.

Continue to improve and make plans, positive thinking is a good thing. All the negatives of treatment will be a thing of the past before you know it. Only the positives or your treatments will endure.

Besides, if we would had never gotten sick, we'd not met each other....

John

Hi John,
Now there's a
Hi John,

Now there's a reason to make all this worth while LOL I like that!

I will absolutely aim towards your neck of the woods.

My son loves mudbugs (crawfish) I don't think I've ever had Boudin though, I had to look it up on Google to learn what it is. I do love sausage!

There is so much childhood my kids missed out on and so much we couldn't do together so we feel such a excursion would be a great experience.

Thank you for all your encouragement John.

Mike

Skiffin16

Chefdaddy said:

Hi John,
Now there's a
Hi John,

Now there's a reason to make all this worth while LOL I like that!

I will absolutely aim towards your neck of the woods.

My son loves mudbugs (crawfish) I don't think I've ever had Boudin though, I had to look it up on Google to learn what it is. I do love sausage!

There is so much childhood my kids missed out on and so much we couldn't do together so we feel such a excursion would be a great experience.

Thank you for all your encouragement John.

Mike

Making Your Plans
Keep making those plans and staying positive for the future....

Boudin is great, at least what I've had. Everyone makes it the same only different, LOL...

Where are you in your treatment, it sounds like my treatment was very much similar to what you are going thru now. For me the Chemo wasn't really too bad at all. With one exception and it's a very important one...stay hydrated. I let myself become slightly dehydrated during the second round of Chemo. Boy that only takes once to never do it again. I felt bad, really bad. All I wanted to do was sleep, I felt so bad. The more I slept, the less I drank, the worse I felt.

When I went in a few days later to have the pump removed, I told them how bad I had been feeling. The nurse asked have you been drinking ebough fluids. I said, well I've been trying to, she quickly got on me, "If you're trying to, you haven't been drinking enough".

LOL, they ran two bags of fluids through me. Then I made another mistake... I felt so good, I stopped and picked up some Black Beans and Rice up on the way home. Big mistake, I paid for that for a few days I think...LOL. Let's just say, they didn't agree with me..at all....live and learn.

The radiation was the worse as for feeling bad. I hated having to be strapped down with "The Mask". I had been dredding that during the entire nine weeks of Chemo before I started the radiation.

My chemo doctor is/was awesome, she told me if there was anything I was going through, just let her know, she had something for it....

So she gave me a prescription for Xanax to help with the anxiety once the days of radiation came. I took one each of the first few days, but by evening I was zonked. So I started pinching them in half. That lasted a few more days, then by the following week, I didn't need them any longer.

I never felt anything really during the actual radiation. I felt a dryness and a little discomfort a few hours later. I drove myself to all of my radiation treatments and that wasn't a problem.

I guess the last 2 weeks or so and the following 3 weeks after radiation was the worse. Raw throat, very painful just to swallow water. I survived off of water, Ensure Plus and DelMonte Peaches in the mason jars....

LOL, I thought that since I couldn't really taste anything that I would try the unsweetned peaches..LOL, I could definitely tell the difference.

I lost all of my taste for several months about three weeks into the radiation and several weeks after. During that time even water was nasty, it tasted like sweat.

I have a lot of my taste back now, sweet was the longest to regain and I still don't have much, but it's improving. Improvements aren't measured daily, it's more like every few months I'll notice something tastes better than it did the last time I tried it.

Anyways, I hope this gives you a little insight and and will be a positive insight...you can do it.

Just remember everyone is different, I didn't have it nearly as bad as others I have read about. I just kept think that and being positive...faith, family and friends.

I have and still have a huge support network. My wife included about 100 friends and family on a weekly status of my updates that she would sent out. It was awesome to hear from so many people pulling for me....you have that here.

God Bless and Keep us posted of your progress....

John

Hondo

Skiffin16 said:

Making Your Plans
Keep making those plans and staying positive for the future....

Boudin is great, at least what I've had. Everyone makes it the same only different, LOL...

Where are you in your treatment, it sounds like my treatment was very much similar to what you are going thru now. For me the Chemo wasn't really too bad at all. With one exception and it's a very important one...stay hydrated. I let myself become slightly dehydrated during the second round of Chemo. Boy that only takes once to never do it again. I felt bad, really bad. All I wanted to do was sleep, I felt so bad. The more I slept, the less I drank, the worse I felt.

When I went in a few days later to have the pump removed, I told them how bad I had been feeling. The nurse asked have you been drinking ebough fluids. I said, well I've been trying to, she quickly got on me, "If you're trying to, you haven't been drinking enough".

LOL, they ran two bags of fluids through me. Then I made another mistake... I felt so good, I stopped and picked up some Black Beans and Rice up on the way home. Big mistake, I paid for that for a few days I think...LOL. Let's just say, they didn't agree with me..at all....live and learn.

The radiation was the worse as for feeling bad. I hated having to be strapped down with "The Mask". I had been dredding that during the entire nine weeks of Chemo before I started the radiation.

My chemo doctor is/was awesome, she told me if there was anything I was going through, just let her know, she had something for it....

So she gave me a prescription for Xanax to help with the anxiety once the days of radiation came. I took one each of the first few days, but by evening I was zonked. So I started pinching them in half. That lasted a few more days, then by the following week, I didn't need them any longer.

I never felt anything really during the actual radiation. I felt a dryness and a little discomfort a few hours later. I drove myself to all of my radiation treatments and that wasn't a problem.

I guess the last 2 weeks or so and the following 3 weeks after radiation was the worse. Raw throat, very painful just to swallow water. I survived off of water, Ensure Plus and DelMonte Peaches in the mason jars....

LOL, I thought that since I couldn't really taste anything that I would try the unsweetned peaches..LOL, I could definitely tell the difference.

I lost all of my taste for several months about three weeks into the radiation and several weeks after. During that time even water was nasty, it tasted like sweat.

I have a lot of my taste back now, sweet was the longest to regain and I still don't have much, but it's improving. Improvements aren't measured daily, it's more like every few months I'll notice something tastes better than it did the last time I tried it.

Anyways, I hope this gives you a little insight and and will be a positive insight...you can do it.

Just remember everyone is different, I didn't have it nearly as bad as others I have read about. I just kept think that and being positive...faith, family and friends.

I have and still have a huge support network. My wife included about 100 friends and family on a weekly status of my updates that she would sent out. It was awesome to hear from so many people pulling for me....you have that here.

God Bless and Keep us posted of your progress....

John

Daddy Mike / John
Don’t leave Hondo out of it, I have an idea. When Daddy Mike finishes with all his treatment and does the travel thing we can all meet somewhere, my vote is Tampa.

John: Now that is what I call a nice picture my friend

Skiffin16

Hondo said:

Daddy Mike / John
Don’t leave Hondo out of it, I have an idea. When Daddy Mike finishes with all his treatment and does the travel thing we can all meet somewhere, my vote is Tampa.

John: Now that is what I call a nice picture my friend

HONDO
Sorry, didn't mean to sound like you weren't included...you were.

Thanks, that was our family Christmas photo... It took me about five tries to get one with the dogs calm enough...

Tampa works for me...LOL, there's a lot for ChefDaddy and his children to see as well as Orlando and the sights there, not to forget Kennedy Space Center in Cocoa....

JG

Chefdaddy

Skiffin16 said:

Making Your Plans
Keep making those plans and staying positive for the future....

Boudin is great, at least what I've had. Everyone makes it the same only different, LOL...

Where are you in your treatment, it sounds like my treatment was very much similar to what you are going thru now. For me the Chemo wasn't really too bad at all. With one exception and it's a very important one...stay hydrated. I let myself become slightly dehydrated during the second round of Chemo. Boy that only takes once to never do it again. I felt bad, really bad. All I wanted to do was sleep, I felt so bad. The more I slept, the less I drank, the worse I felt.

When I went in a few days later to have the pump removed, I told them how bad I had been feeling. The nurse asked have you been drinking ebough fluids. I said, well I've been trying to, she quickly got on me, "If you're trying to, you haven't been drinking enough".

LOL, they ran two bags of fluids through me. Then I made another mistake... I felt so good, I stopped and picked up some Black Beans and Rice up on the way home. Big mistake, I paid for that for a few days I think...LOL. Let's just say, they didn't agree with me..at all....live and learn.

The radiation was the worse as for feeling bad. I hated having to be strapped down with "The Mask". I had been dredding that during the entire nine weeks of Chemo before I started the radiation.

My chemo doctor is/was awesome, she told me if there was anything I was going through, just let her know, she had something for it....

So she gave me a prescription for Xanax to help with the anxiety once the days of radiation came. I took one each of the first few days, but by evening I was zonked. So I started pinching them in half. That lasted a few more days, then by the following week, I didn't need them any longer.

I never felt anything really during the actual radiation. I felt a dryness and a little discomfort a few hours later. I drove myself to all of my radiation treatments and that wasn't a problem.

I guess the last 2 weeks or so and the following 3 weeks after radiation was the worse. Raw throat, very painful just to swallow water. I survived off of water, Ensure Plus and DelMonte Peaches in the mason jars....

LOL, I thought that since I couldn't really taste anything that I would try the unsweetned peaches..LOL, I could definitely tell the difference.

I lost all of my taste for several months about three weeks into the radiation and several weeks after. During that time even water was nasty, it tasted like sweat.

I have a lot of my taste back now, sweet was the longest to regain and I still don't have much, but it's improving. Improvements aren't measured daily, it's more like every few months I'll notice something tastes better than it did the last time I tried it.

Anyways, I hope this gives you a little insight and and will be a positive insight...you can do it.

Just remember everyone is different, I didn't have it nearly as bad as others I have read about. I just kept think that and being positive...faith, family and friends.

I have and still have a huge support network. My wife included about 100 friends and family on a weekly status of my updates that she would sent out. It was awesome to hear from so many people pulling for me....you have that here.

God Bless and Keep us posted of your progress....

John

Dear friend John
Thank you
Dear friend John

Thank you soooo much for all the great info. You included so much that I have either been dreading or very unsure of.


To try to answer your first question is actually pathetic lol, I've gone through all this stuff and I still haven't started any treatment yet. I'm so embarrassed, it's been like watching a bad version of the reality show Survivor only staged in and out of the hospital, just trying to get prepared (survive) for treatment to start. lol I'm the new poster child for DON'T DO IT THIS WAY! lol

Here's my story; Squamous cell with unknown primary, tonsils and right side neck lymph node removed, all teeth to be removed Thursday by Oral surgeons, having infamous mask made on the 20th and becoming a recalled toy made in China 10 days after the teeth removed. lol

I am to also have Erbitux with the radiation as they are concerned that having chemo will greatly worsen already existing neuropathy. (Not only am I going to have a nice glow but I will also be the worlds largest zit!) lol

Oh and here's the final topper! Today I finally got a primary care doctor (I did it all backwards and started with specialists) and we were discussing the horrible time I've had controlling my blood sugar, it jumped to 427 yesterday. They tested my blood today and it was 290, I also used my meter and it read 368 at the same time. That's only 78 points off!!

The nurse used the test liquid that came with it and it showed that it was right on.
Last week when I was in the hospital my nurse did a test using the hospital's machine and mine and mine was 15 points lower. After a week of over-compensating with insulin I'm very fortunate to not be in a comma! The doctor quickly ordered me another machine. lol

I'm sure this factor alone will help in making me feel better.

Did you have a problem with getting Thrush in your mouth during treatment?

My biggest fear John is that I will not have anything to stop the pain. I cannot handle pain medications, I can only take a very small amount and my head starts spinning, a form of Vertigo. Doesn't touch the pain. After both surgeries I had a very difficult time in recovery, trying to come out from under the general anesthesia. So far the doctors do not appear to have an answer. I did mention a seven week induced comma but they didn't jump on the idea. lol The kids did! Hmmmmm!


Thank you for all your wonderful info John

Bless you all!

Mike

Chefdaddy

Hondo said:

Daddy Mike / John
Don’t leave Hondo out of it, I have an idea. When Daddy Mike finishes with all his treatment and does the travel thing we can all meet somewhere, my vote is Tampa.

John: Now that is what I call a nice picture my friend

Heh there Big Daddy
Heh there Big Daddy Hondo!

How are you doing?

Tampa sounds good too, I know my kids would love everything the southeast has to offer, especially the great eats there.

My daughter and I stopped for a bite to eat today and I had my first full meal! It was a bowl of Vietnamese noodle soup and it went past the angry throat with few problems and surprised the heck out of my stomach. The bad part was quickly realizing that the PEG tube and the soup were fighting for space and it was a battle that went on for hours! lol It was the first meal in weeks.

I'm still looking for the pictures to send you of the kids.


Your friend

Mike

Hondo

Chefdaddy said:

Heh there Big Daddy
Heh there Big Daddy Hondo!

How are you doing?

Tampa sounds good too, I know my kids would love everything the southeast has to offer, especially the great eats there.

My daughter and I stopped for a bite to eat today and I had my first full meal! It was a bowl of Vietnamese noodle soup and it went past the angry throat with few problems and surprised the heck out of my stomach. The bad part was quickly realizing that the PEG tube and the soup were fighting for space and it was a battle that went on for hours! lol It was the first meal in weeks.

I'm still looking for the pictures to send you of the kids.


Your friend

Mike

Daddy Mike
Daddy Mike

Tampa it is… I would love to have my Big brother Kent there too as he has been a blessing to me here on CSN, who knows maybe we will have a reunion after all.

I would love to see those pictures of the children. Vietnamese noodle soup is very good take in all you can now if your tube will stop fight you for mastery of your stomach.

Take care my friend I will call you this week end

Skiffin16

Chefdaddy said:

Dear friend John
Thank you
Dear friend John

Thank you soooo much for all the great info. You included so much that I have either been dreading or very unsure of.


To try to answer your first question is actually pathetic lol, I've gone through all this stuff and I still haven't started any treatment yet. I'm so embarrassed, it's been like watching a bad version of the reality show Survivor only staged in and out of the hospital, just trying to get prepared (survive) for treatment to start. lol I'm the new poster child for DON'T DO IT THIS WAY! lol

Here's my story; Squamous cell with unknown primary, tonsils and right side neck lymph node removed, all teeth to be removed Thursday by Oral surgeons, having infamous mask made on the 20th and becoming a recalled toy made in China 10 days after the teeth removed. lol

I am to also have Erbitux with the radiation as they are concerned that having chemo will greatly worsen already existing neuropathy. (Not only am I going to have a nice glow but I will also be the worlds largest zit!) lol

Oh and here's the final topper! Today I finally got a primary care doctor (I did it all backwards and started with specialists) and we were discussing the horrible time I've had controlling my blood sugar, it jumped to 427 yesterday. They tested my blood today and it was 290, I also used my meter and it read 368 at the same time. That's only 78 points off!!

The nurse used the test liquid that came with it and it showed that it was right on.
Last week when I was in the hospital my nurse did a test using the hospital's machine and mine and mine was 15 points lower. After a week of over-compensating with insulin I'm very fortunate to not be in a comma! The doctor quickly ordered me another machine. lol

I'm sure this factor alone will help in making me feel better.

Did you have a problem with getting Thrush in your mouth during treatment?

My biggest fear John is that I will not have anything to stop the pain. I cannot handle pain medications, I can only take a very small amount and my head starts spinning, a form of Vertigo. Doesn't touch the pain. After both surgeries I had a very difficult time in recovery, trying to come out from under the general anesthesia. So far the doctors do not appear to have an answer. I did mention a seven week induced comma but they didn't jump on the idea. lol The kids did! Hmmmmm!


Thank you for all your wonderful info John

Bless you all!

Mike

Thrush
I honestly had it very easy from what I had anticipated. It definitely wasn't something that I'd wish on anyone or want to have to go through again, but I'll do what I have to do if that time ever comes again.

I didn't really have problems with my teeth, gums or mouth. That's still a fear as I've never really had great teeth. I have a mouth full of fillings two teeth that have been pulled the last few years and a root canal and crown. I'm glad that I still have my teeth, and really dread going through any of that. It was never really even mentioned to me about all of the possible side effects after radiation until after radiation....

My radiologists just feel everyone is different and we'll deal with what is needed when and if the time comes.

The only illnesses that I endured during all of the treatments were the slight de-hydration.

I did have a reaction to the combination of Amifostine and Radiation at about 28 days into the 35 days of treatment. I started getting really high fevers, like 102.7. I had those two nights in a row and really fought to keep the fever down. Then during the week-end and no treatments I didn't have a fever. The next Monday after the Amifostine shot and radiation that evening my temperature dropped to 96.7 then all the way to 102.8.

I told them they needed to figure something out. I wasn't doing that anymore.. My body was really stressed from that extreme chill, my left arm was aching, and I was concerned that I was really stressed. Anyways, we quit the Amifostine those last few days and I never had another fever.

If you already have had your tonsils out, that's actually about the most sever pain that I had. During the two weeks after the tonsils were out, and about that same intensity the last few weeks on each side of finishing radiation.

I wasn't in much pain other than when trying to drink, eating was out of the question for me. I had a few different pain meds that helped.

What worked best and lasted longer was Percocet Tablets. I had these for my port and enough left that occasionally I'd take one at night to help get some good rest. I also had a solution of thick liquid meds called Larry's Solution #2. I had all of those caines in it...LOL, but it lasted about 10 minutes or so, enough to choke down some water and Ensure Plus; to knock the edge off of pain longer during and after I'd dissolve a Percocet in a 1/4 cup of water and drink that.

When my Percocets ran out, my chemo doctor ordered my some Roxanol (liquid Morphine). I tried that a few times and it made me really upset to my stomach. So I asked her if she could give me another prescription of Percocets. Those lasted me until I didn't need them any longer.

My neck did start peeling about four weeks into the radiation, but not sever. It was more like a bad sunburn. It dried out, cracked and peeled, but wasn't raw. I have seen some that was raw and seeping.

My biggest asset was my chemo doctor, she was awesome. She always told me no matter what, I was going through, there was something that could help relive the pain or illness.

During the first few days of chemo I took a pill called Emend. It's expensive, but I never got sick once from the chemo.

Well actually I take that back. When I was getting close to treatment again, I'd feel sick just thinking about it, although I never got sick from it, LOL. You know when you eat something bad, just the thought of it later makes you sick feeling. That was me and chemo.... Anyways, I was fishing with a friend once and he kept talking about my chemo, how was it, what it felt like, etc.... well finally I had to tell him to shut up, and Ohhh and BTW, can you pull over now so I can throw up LOL....sorry for the visual.

Sorry if I paint a bad picture, but in reality for me, I was very lucky. I hope that you also endure and hold up as well.....stay positive, retain your sense of humor (which for me is huge). I would tell everyone, well I mean after all, other than having cancer, I'm in perfect health...LOL.

I honestly believe that was a big plus in getting me through my ordeal. I was in good health, no drugs, cholesterol, blood pressure and sugar are all good. My humor is intact, my faith, family and friends are in order and on the ready when called upon. What else could I do to prepare myself for battle....I'm packin. You be the same way, kick butt, retain some humor, and call in those favors.

John

Kent Cass

Skiffin16 said:

Thrush
I honestly had it very easy from what I had anticipated. It definitely wasn't something that I'd wish on anyone or want to have to go through again, but I'll do what I have to do if that time ever comes again.

I didn't really have problems with my teeth, gums or mouth. That's still a fear as I've never really had great teeth. I have a mouth full of fillings two teeth that have been pulled the last few years and a root canal and crown. I'm glad that I still have my teeth, and really dread going through any of that. It was never really even mentioned to me about all of the possible side effects after radiation until after radiation....

My radiologists just feel everyone is different and we'll deal with what is needed when and if the time comes.

The only illnesses that I endured during all of the treatments were the slight de-hydration.

I did have a reaction to the combination of Amifostine and Radiation at about 28 days into the 35 days of treatment. I started getting really high fevers, like 102.7. I had those two nights in a row and really fought to keep the fever down. Then during the week-end and no treatments I didn't have a fever. The next Monday after the Amifostine shot and radiation that evening my temperature dropped to 96.7 then all the way to 102.8.

I told them they needed to figure something out. I wasn't doing that anymore.. My body was really stressed from that extreme chill, my left arm was aching, and I was concerned that I was really stressed. Anyways, we quit the Amifostine those last few days and I never had another fever.

If you already have had your tonsils out, that's actually about the most sever pain that I had. During the two weeks after the tonsils were out, and about that same intensity the last few weeks on each side of finishing radiation.

I wasn't in much pain other than when trying to drink, eating was out of the question for me. I had a few different pain meds that helped.

What worked best and lasted longer was Percocet Tablets. I had these for my port and enough left that occasionally I'd take one at night to help get some good rest. I also had a solution of thick liquid meds called Larry's Solution #2. I had all of those caines in it...LOL, but it lasted about 10 minutes or so, enough to choke down some water and Ensure Plus; to knock the edge off of pain longer during and after I'd dissolve a Percocet in a 1/4 cup of water and drink that.

When my Percocets ran out, my chemo doctor ordered my some Roxanol (liquid Morphine). I tried that a few times and it made me really upset to my stomach. So I asked her if she could give me another prescription of Percocets. Those lasted me until I didn't need them any longer.

My neck did start peeling about four weeks into the radiation, but not sever. It was more like a bad sunburn. It dried out, cracked and peeled, but wasn't raw. I have seen some that was raw and seeping.

My biggest asset was my chemo doctor, she was awesome. She always told me no matter what, I was going through, there was something that could help relive the pain or illness.

During the first few days of chemo I took a pill called Emend. It's expensive, but I never got sick once from the chemo.

Well actually I take that back. When I was getting close to treatment again, I'd feel sick just thinking about it, although I never got sick from it, LOL. You know when you eat something bad, just the thought of it later makes you sick feeling. That was me and chemo.... Anyways, I was fishing with a friend once and he kept talking about my chemo, how was it, what it felt like, etc.... well finally I had to tell him to shut up, and Ohhh and BTW, can you pull over now so I can throw up LOL....sorry for the visual.

Sorry if I paint a bad picture, but in reality for me, I was very lucky. I hope that you also endure and hold up as well.....stay positive, retain your sense of humor (which for me is huge). I would tell everyone, well I mean after all, other than having cancer, I'm in perfect health...LOL.

I honestly believe that was a big plus in getting me through my ordeal. I was in good health, no drugs, cholesterol, blood pressure and sugar are all good. My humor is intact, my faith, family and friends are in order and on the ready when called upon. What else could I do to prepare myself for battle....I'm packin. You be the same way, kick butt, retain some humor, and call in those favors.

John

John, Mike and Hondo
If y'all have a gathering, know I will be there in Spirit. IF THERE IS A MAJOR GATHERING- WHICH DOES SEEM TO ME A FINE IDEA- THEN LET THE TIME AND PLACE BE KNOWN BY ALL. I do have vacation time, from work. And every one of you is in my heart.
Hondo- you, my Brother, are the Rock of this forum. You know what I am saying, my friend.

To all- no matter what gets dealt your way- know you can overcome. Believe you can, and you will. All you gotta do is BELIEVE. For me- that belief is in Jesus, and His Father, our God. To find that union of Belief, is to find immeasurable help. I cannot find the adequate Belief in other than the forementioned to realize a legitimate Faith-in, or Belief, in contemplating the possibilities of such. But such as that is for each of us, as individuals, to formulate for ourselves. Just know, that there are those of us, such as Hondo and myself, who have been tested to extremes, and our Faith/Belief has not been shaken in the least. Seek, and you will find what we have found...and you will overcome any and all obstacles. But if you doubt, then you must seek; and, if you do in earnest, you will find...you will overcome, and it all will become so worthwhile.

Believe.

kcass