Diagnosed last Monday (Squamous Cell -throat cancer)
Comments
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geeChefdaddy said:Hello my friends,
The last
Hello my friends,
The last time I was here was the 2nd after having my tonsils removed on the 30th. Around 5:00pm I started bleeding profusely from the surgery area and my brother called for an ambulance. I lost a lot of blood by the time I reached the hospital. The bleeding slowed down a little and the ENT doctors were called in and they tried using Silver Nitrate but 30 minutes later everything exploded and I was in serious trouble. They could not stop the bleeding. I lost almost two quarts. They ran me into the Operating Room but they couldn't get any of the "ON Call" anesthetist's to answer their phone calls or pages. They said they wanted to give me blood due to the significant amount that I had lost but I was told later that there was a high risk of my blood disorder having a problem with other blood and possibly causing an infection. So I have been extremely fatigued and exhausted for the last two days and very sore as they cauterized the entire area where they had removed the tonsils the first time. I swear I need to throw out all of my shirts that have the bullseye on the back! This is getting ridiculous. The other problem the hospital has been working on with little or no sucess is trying to control my blood sugar. They have controlled my small diet and still the sugar levels are very high. They have switched me over to Lantus with additional shots each meal and it's still in the high 200's. They keep telling me that I am going to have real problems if they don't get it under control by the time the radiation starts. Kent and Hondo, thank you for your input on the issue of having radiation and chemo together. I think there is too much of a risk to not have both. I'm still really weak and kind of mushy brained from the blood loss so please excuse any typo's and backwards sentences.
Your friend
Chefdaddy Mike
you can't catch a break, can you....so sorry that you are going through all of this! You are definitely in my prayers. You can and will get through this; keep your head where your feet are and know that you are not alone. Dazey0 -
Thank you Dazey,Dazey said:gee
you can't catch a break, can you....so sorry that you are going through all of this! You are definitely in my prayers. You can and will get through this; keep your head where your feet are and know that you are not alone. Dazey
It's
Thank you Dazey,
It's becoming overwhelming. God says he won't give you more than you can handle but I'm so weak and in constant pain that I'm past that point and I have yet to have all my teeth pulled and begin radiation.
I don't think I should communicate here anymore as it may do harm to someone new.
Thank you for all of your prayers
I love you all
Mike0 -
keep talkingChefdaddy said:Thank you Dazey,
It's
Thank you Dazey,
It's becoming overwhelming. God says he won't give you more than you can handle but I'm so weak and in constant pain that I'm past that point and I have yet to have all my teeth pulled and begin radiation.
I don't think I should communicate here anymore as it may do harm to someone new.
Thank you for all of your prayers
I love you all
Mike
You need to focus on your journey right now. Keep communicating. If you are not comfortable with this forum, you can send emails (PM) to any of us using the CSN email.
I have a sign on my front door that I have to look at before I leave each day. It says:
Never, never give up. (On the flip side, the sign I see when I open the door each night says" Be nice or leave.) Both are valuable. Don't give up. I know it is pretty bad right now. I know this forum has been a lifeline for all of us at times. Sometimes, we don't agree with what is said, sometimes we scream, "right on!" and sometimes we just want to curl up in a ball. There is always someone who you can reach out to - to cheer you on, to share your pain. I don't think that God gives us this journey, but I strongly believe God is here to walk by our sides to get through it. Dazey0 -
Don't stop nowChefdaddy said:Thank you Dazey,
It's
Thank you Dazey,
It's becoming overwhelming. God says he won't give you more than you can handle but I'm so weak and in constant pain that I'm past that point and I have yet to have all my teeth pulled and begin radiation.
I don't think I should communicate here anymore as it may do harm to someone new.
Thank you for all of your prayers
I love you all
Mike
No matter the problem the forum will be here to let you vent. Please do not think that your descriptions or feelings of a real adventure that you are experiencing will scare someone off. Well duh...I have/had cancer... isn't that scary enough? I know from personal experience that reading and participating in this forum is helpful. I wish I had found it sooner. I know it can feel overwhelming. It won't be. But it will be different. and it won't be easy. Hang in there. Good luck!!0 -
I have to agree! It will docwcad said:Don't stop now
No matter the problem the forum will be here to let you vent. Please do not think that your descriptions or feelings of a real adventure that you are experiencing will scare someone off. Well duh...I have/had cancer... isn't that scary enough? I know from personal experience that reading and participating in this forum is helpful. I wish I had found it sooner. I know it can feel overwhelming. It won't be. But it will be different. and it won't be easy. Hang in there. Good luck!!
I have to agree! It will do you no good to stop this forum. You need this to let all the pain out. Physically,emotionally and spiritually. This is what this forum is for. We have been through it. Some have had it worse than others. But you are still alive and you need to fight. A fight for your life, they say. I am sure that slowly you will find more and more strength. Do not stop communicating with people that want to help:)
Cindy0 -
Going forwardfishingirl said:I have to agree! It will do
I have to agree! It will do you no good to stop this forum. You need this to let all the pain out. Physically,emotionally and spiritually. This is what this forum is for. We have been through it. Some have had it worse than others. But you are still alive and you need to fight. A fight for your life, they say. I am sure that slowly you will find more and more strength. Do not stop communicating with people that want to help:)
Cindy
Chef- looks like a very rough time ahead. Understandable, if you don't wanna communicate. Worst of times, for me- nobody could appreciate what I was experiencing, and my existence came down to that between me and God, and those involved in my caretaking. All I can say, bottom-line, is Good Luck, and you are in my Prayers. C must only be seen thru eyes that can contend with, and maybe win the battle, and that's what this forum is all about. I have a current issue, which I have shared with Hondo via email, but that's a private battle, and matter between me and C. As man, I told family when my C ordeal began that all a man can do is roll-up his shirtsleeves, maybe take his belt in a notch, and then find a grin to wear that's real. There's all sorts of med help out there, both physical and mental. Take the path you find the truest to take, Chef. Just the way it is, my friend. Believe you can get thru this, and you will. Truly do hope you win this battle.
Believe.
kcass0 -
Hang in thereChefdaddy said:Thank you Dazey,
It's
Thank you Dazey,
It's becoming overwhelming. God says he won't give you more than you can handle but I'm so weak and in constant pain that I'm past that point and I have yet to have all my teeth pulled and begin radiation.
I don't think I should communicate here anymore as it may do harm to someone new.
Thank you for all of your prayers
I love you all
Mike
HI Chef,
Your pain Post Surgery is no surprise. They have cut a couple of big holes inside your mouth. I was hospitalized for 10 days and given constant Pain medication for just one tonsil removal.
You can get through this and hopefully have some respite before the next step. Take each moment and each day as it comes. We all understand if you keep posting or if you decide to stop. Just know lots of us here are supporting you with words and prayers.
You have a bunch of difficult complications which we all hope you and your Doctors will find ways through. Do whatever it takes. Let your Doctors know how you are going emotionally as they may be able to assist with something to help you through the anxiety and suffering.
We are all here if and when you need.
Sending light your way.
Scambuster0 -
Hello my friends,Scambuster said:Hang in there
HI Chef,
Your pain Post Surgery is no surprise. They have cut a couple of big holes inside your mouth. I was hospitalized for 10 days and given constant Pain medication for just one tonsil removal.
You can get through this and hopefully have some respite before the next step. Take each moment and each day as it comes. We all understand if you keep posting or if you decide to stop. Just know lots of us here are supporting you with words and prayers.
You have a bunch of difficult complications which we all hope you and your Doctors will find ways through. Do whatever it takes. Let your Doctors know how you are going emotionally as they may be able to assist with something to help you through the anxiety and suffering.
We are all here if and when you need.
Sending light your way.
Scambuster
Again, I
Hello my friends,
Again, I thank you for being here. To everyone that has responded with concern, advice and support, please forgive me if I have failed to directly thank you in a reply. My time on here is limited to how long I can be vertical and sitting at this desk. Today I learned that a simple yawn can make you loose conciseness from pain. Wednesday afternoon I have my first consult with my Oncology doctor, I don't really know what to expect from him as I was diagnosed by my ENT team and have already met with the radiation doctor. I'm waiting to hear from the diabetes group as my sugar numbers are worse than ever and I'm barely eating. I'm also waiting to hear from the dental department to let me know when they are planning to extract all my teeth. I feel like I'm regaining a little more strength after the emergency room nightmare and going back to the OR.
I am trying to "hang in there". Please don't stop praying for me.
Thank you all
Chefdaddy Mike0 -
Daddy MikeChefdaddy said:Hello my friends,
Again, I
Hello my friends,
Again, I thank you for being here. To everyone that has responded with concern, advice and support, please forgive me if I have failed to directly thank you in a reply. My time on here is limited to how long I can be vertical and sitting at this desk. Today I learned that a simple yawn can make you loose conciseness from pain. Wednesday afternoon I have my first consult with my Oncology doctor, I don't really know what to expect from him as I was diagnosed by my ENT team and have already met with the radiation doctor. I'm waiting to hear from the diabetes group as my sugar numbers are worse than ever and I'm barely eating. I'm also waiting to hear from the dental department to let me know when they are planning to extract all my teeth. I feel like I'm regaining a little more strength after the emergency room nightmare and going back to the OR.
I am trying to "hang in there". Please don't stop praying for me.
Thank you all
Chefdaddy Mike
I am so glad to hear from you again, and continue to put you and your children in pray. I understand about the yawn and passing out thing, the pain sometimes gets so bad that all I can do it to hold the jaw until the pain goes away. Take care and remember there are many here praying for you. God bless0 -
Dig in AgainChefdaddy said:Hello my friends,
Again, I
Hello my friends,
Again, I thank you for being here. To everyone that has responded with concern, advice and support, please forgive me if I have failed to directly thank you in a reply. My time on here is limited to how long I can be vertical and sitting at this desk. Today I learned that a simple yawn can make you loose conciseness from pain. Wednesday afternoon I have my first consult with my Oncology doctor, I don't really know what to expect from him as I was diagnosed by my ENT team and have already met with the radiation doctor. I'm waiting to hear from the diabetes group as my sugar numbers are worse than ever and I'm barely eating. I'm also waiting to hear from the dental department to let me know when they are planning to extract all my teeth. I feel like I'm regaining a little more strength after the emergency room nightmare and going back to the OR.
I am trying to "hang in there". Please don't stop praying for me.
Thank you all
Chefdaddy Mike
Chefdaddy,
Please don't stop posting here. Even though it's scary sometimes, I find that reading other peoples' posts helps me feel more prepared and informed.
They also (unfortunately, in your case) make me feel grateful that I've had the luck I have so far. Before I ever read your post, I read about the "serious bleeds" that can happen post tonsillectomy by going onto a tonsillectomy patient website. It was a great fear for me when I had my rt. tonsil out at the end of October, and I was glad to not have to go through the additional suffering . I'm so sorry to hear you are one of the minority who have to go through that nightmare.
It heartens people like me to see your grit. Please know that people who may never even write or post to you are pulling for you.
- Pam0 -
Hi Pam,Pam M said:PEG Cramps
ChefDaddy,
I've been reading your thread, and am hoping for the best for you and your children.
Have to ask - was your cramping at the PEG site only? Since my 12-24 PEG placement, I've been having some (sometimes hard} cramping (not as bad as yours) several inches away from the incision site, and haven't been able to get a possible explanation.
Good to read about the PET results. Keep up the good news.
Pam
Today when I was talking to my oncology doctor for the first time and I mentioned that I was on Valium to help control the muscle spasms around the PEG. He took a hold of the tube and in a couple seconds the pain was gone. Apparently the outside part of the PEG that is against the skin also has a similar piece on the inside of the muscle wall and the surgeon that puts the PEG in determines how tight it clamps the muscle wall. A lot of surgeons think that it needs to be clamped tight. My oncology doctor said he had one patient that couldn't stand upright because it was so tightly clamped. My oncology doctor squeezed the tube mechanism and it immediately gave more slack between the two clamps. The pain stopped immediately.
I hope this helps!
May God richly bless you and yours
Chefdaddy0 -
Hi Hondo,Hondo said:Daddy Mike
I am so glad to hear from you again, and continue to put you and your children in pray. I understand about the yawn and passing out thing, the pain sometimes gets so bad that all I can do it to hold the jaw until the pain goes away. Take care and remember there are many here praying for you. God bless
Is there a way to
Hi Hondo,
Is there a way to email you privately?
Thank you
Mike0 -
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,
John0 -
ChefChefdaddy said:Hi Hondo,
Is there a way to
Hi Hondo,
Is there a way to email you privately?
Thank you
Mike
You are in the throws of this treatment right now. You must keep trying to post or atleast email those you feel the most comfy with. My husband has been thru this treatment and just had his 3 mo PET - no traces of cancer in his body - as many others on this site have noted, the hellish treatment can and does bring mighty results. So many of the folks here know the power of prayer and we are praying for you daily. As my husband's ENT told him, "I am a HUGE fan of prayer." As far as I am concerned, chemo, rads, and prayer is the treatment!!0 -
Thank you!pk said:Chef
You are in the throws of this treatment right now. You must keep trying to post or atleast email those you feel the most comfy with. My husband has been thru this treatment and just had his 3 mo PET - no traces of cancer in his body - as many others on this site have noted, the hellish treatment can and does bring mighty results. So many of the folks here know the power of prayer and we are praying for you daily. As my husband's ENT told him, "I am a HUGE fan of prayer." As far as I am concerned, chemo, rads, and prayer is the treatment!!
Thank you PK for your encouraging words.
I know that the beginning of my journey started off very unusual,accompanied with an unusual amount of pain and several scares in the ER, but with God's merciful hand and all of you that prayed for me, I made it through. I'm almost strong enough to begin the treatment regimen, My teeth are to be removed on the 14th in the OR and then the Radiation and Erbitux begins 10 days later.
If you wouldn't mind, I would ask that you would keep my 14 year old son in prayer, He has several medical issues he's dealing with. He is in his third year of ALL leukemia, he gets chemo everyday by me and in his spine every three months. He has Cirrhosis of the liver (from an early chemo), he has compression fractures throughout his spine accompanied with Kyphosis and scoliosis of the spine. He was diagnosed a few weeks ago with a condition called Esophageal Varices, a side affect of the liver and the chemo. Eight months before they learned he had leukemia he had undergone leg and feet reconstruction on both legs and was learning to walk again when he became ill from leukemia. He is in chronic pain and never complains unless it becomes too unbearable. He is in remission now and his last chemo is April this year. If he remains off chemo for two years they are going to do a liver transplant. My son has taught me a lot about what a human can endure even when you don't think there is anything left to fight with.
I love you all and for your support.
Thank you
Chefdaddy0 -
NovenasChefdaddy said:Thank you!
Thank you PK for your encouraging words.
I know that the beginning of my journey started off very unusual,accompanied with an unusual amount of pain and several scares in the ER, but with God's merciful hand and all of you that prayed for me, I made it through. I'm almost strong enough to begin the treatment regimen, My teeth are to be removed on the 14th in the OR and then the Radiation and Erbitux begins 10 days later.
If you wouldn't mind, I would ask that you would keep my 14 year old son in prayer, He has several medical issues he's dealing with. He is in his third year of ALL leukemia, he gets chemo everyday by me and in his spine every three months. He has Cirrhosis of the liver (from an early chemo), he has compression fractures throughout his spine accompanied with Kyphosis and scoliosis of the spine. He was diagnosed a few weeks ago with a condition called Esophageal Varices, a side affect of the liver and the chemo. Eight months before they learned he had leukemia he had undergone leg and feet reconstruction on both legs and was learning to walk again when he became ill from leukemia. He is in chronic pain and never complains unless it becomes too unbearable. He is in remission now and his last chemo is April this year. If he remains off chemo for two years they are going to do a liver transplant. My son has taught me a lot about what a human can endure even when you don't think there is anything left to fight with.
I love you all and for your support.
Thank you
Chefdaddy
Chefdaddy,
I just joined this site today and have read your messages. First of all, I have to say what a wonderful father you are! Your children are so lucky to have you and I know how hard you will fight to get through your treatment for them.
I have been treated for tongue cancer and kidney cancer over the past 14 months and I'm doing so very well. Things were difficult for awhile and it seemed I was not going to get through this. I went from a wheelchair to a walker to a cane and now I'm walking a mile a day and I'm back to my regular routine. My daily Novenas and the prayers of my friends and family gave me strength and got me through.
You and your son, as well as your daughter, will be in my daily prayers. Gather the strength you need from your online family and you will get through this difficult time.
Theresa0 -
Hi HondoHondo said:Daddy Mike
Thanks for the up date, as you can see there are a lot of us here who missed you these last few days. Both of you are on the top of my prayer list.
God bless
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 Mike0 -
Dearest Theresa,PrimaryX3 said:Novenas
Chefdaddy,
I just joined this site today and have read your messages. First of all, I have to say what a wonderful father you are! Your children are so lucky to have you and I know how hard you will fight to get through your treatment for them.
I have been treated for tongue cancer and kidney cancer over the past 14 months and I'm doing so very well. Things were difficult for awhile and it seemed I was not going to get through this. I went from a wheelchair to a walker to a cane and now I'm walking a mile a day and I'm back to my regular routine. My daily Novenas and the prayers of my friends and family gave me strength and got me through.
You and your son, as well as your daughter, will be in my daily prayers. Gather the strength you need from your online family and you will get through this difficult time.
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 Mike0
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