Diagnosed last Monday (Squamous Cell -throat cancer)

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Comments

  • Chefdaddy
    Chefdaddy Member Posts: 170
    Hondo said:

    Prayers
    My Prayers are with you

    God bless

    Thank you Hondo for your
    Thank you Hondo for your great support.

    Chefdaddy
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Chefdaddy said:

    Hi Mick,
    My prayers are with

    Hi Mick,

    My prayers are with you!

    I have a new dilemma in my boat!

    I am supposed to arrive for surgery at 6:00am tomorrow morning but Portland was hit with a surprise snow storm this afternoon and the whole city is one big parking lot and I don't have a clue how to get up to the hospital. I'm beginning to feel that "Murphy" is a close relative lol.

    The hospital is located on top of a very high hill (referred to as "Pill Hill") and they have a new cable tram that will take you from the newly constructed hospital buildings down at the waterfront at the city level up to the hill top hospital but it doesn't start running until 5:30am and I'm sure it will be packed with patients and medical staff. The roads up to the hospital are very windy and steep and pretty much impossible without 4WD.

    The city buses were caught off guard and they have been colliding with guardrails and other cars. Two buses collided at the end of my street. I called the hospital and the switch board operator told me that the doctor's will most likely be there so I better be.

    I had my PET this morning and I felt like a corn dog lol. An amazing machine, amazing technology.

    I'll check in later, hopefully not as a snow cone!

    Chefdaddy

    hopes and prayers
    You have these from me, Chef. Big day. Believe He is with you, truly believe, and He will be. Trust me on this.

    Believe.

    kcass
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Kent Cass said:

    hopes and prayers
    You have these from me, Chef. Big day. Believe He is with you, truly believe, and He will be. Trust me on this.

    Believe.

    kcass

    Thank you Kent.
    Three years

    Thank you Kent.

    Three years ago this last week, my son, who was 11 at that time, was diagnosed with leukemia, a year ago my son was given two months to live after one of the chemo treatments gave him cirrhosis of the liver, a few months later I learned my kids were being severely abused by my ex's boyfriend. My son is now in remission, his daily chemo regimen ends April, his liver has turned itself around, astonishing his doctors and I successfully confronted 5 of my ex's past attorneys and 4 judges and I now have sole custody of both kids and I am horrible in the court room arena ....Yup! we are definitely believers!

    My difficulty is remembering the light when it gets very dark, but I'm working on that.

    Thank you for your prayers Kent, please keep them coming.

    Chefdaddy
  • Hondo
    Hondo Member Posts: 6,636 Member
    Chefdaddy said:

    Thank you Kent.
    Three years

    Thank you Kent.

    Three years ago this last week, my son, who was 11 at that time, was diagnosed with leukemia, a year ago my son was given two months to live after one of the chemo treatments gave him cirrhosis of the liver, a few months later I learned my kids were being severely abused by my ex's boyfriend. My son is now in remission, his daily chemo regimen ends April, his liver has turned itself around, astonishing his doctors and I successfully confronted 5 of my ex's past attorneys and 4 judges and I now have sole custody of both kids and I am horrible in the court room arena ....Yup! we are definitely believers!

    My difficulty is remembering the light when it gets very dark, but I'm working on that.

    Thank you for your prayers Kent, please keep them coming.

    Chefdaddy

    Chefdaddy
    Big Brother Kent and Little Brother Hondo keeping you in Prayer all the way around, I love Hebrew 11.1 Now faith is the substance of things hoped for, the evidence of things not seen. Your front and back Doors are covered.

    God protect and keep you and your Children in Faith.
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Hondo said:

    Chefdaddy
    Big Brother Kent and Little Brother Hondo keeping you in Prayer all the way around, I love Hebrew 11.1 Now faith is the substance of things hoped for, the evidence of things not seen. Your front and back Doors are covered.

    God protect and keep you and your Children in Faith.

    Thank you both my brothers.
    Thank you both my brothers.

    I want you both to realize how important the fellowship and support is that you have so freely offered to a total stranger. When I had my lymph node removed it was 8 1/2 months after the ENT doctors first told me that there was something wrong with the solid mass that it had become and that it needed to be removed asap. Due to the timing of the onset of court hearings to prove "immediate danger" to the court and several delays and reschedules that followed, I ended up having to cancel the surgery four times. Then three weeks ago I ended up in the ER in debilitating pain in the lymph node area and was told it had to come out and that I had possibly waited too long. On Dec. 16th they removed it and then a week later I was told that I had Squamous Cell cancer with an unknown primary. I was overrun with fear, fear for my children's future and their safety, for if something happened to me they could possibly be forced to go back. That's when I accidentally found this site and met you. You, with your kind words and never ending support while at the same time reflecting the love of our Lord. That is what pulled me out of deep depression and the fear that was numbing me. I don't know what the outcome is going to be after the surgery in the next few hours, but before I leave I just wanted you all to know that you were successful in reminding me "Who's" in charge and that it's not me, nor the fear that was consuming me, but you made me remember that it's the God who carried me through pancreatic cancer in 2001, that has turned a boy's prognosis of only two months to live to now having a miraculously healing liver and who's leukemia is now in remission. That it was God that gave me the words and strength to fight against several highly trained attorney's for my children and to win custody. I just wanted you to know what you actually did for me before I leave for surgery, that what you do here and the manner in which you do what you do here is a wonderful blessing my friends.

    May the Lord richly bless you all

    Chefdaddy Mike
  • fishingirl
    fishingirl Member Posts: 188
    Chefdaddy said:

    Thank you both my brothers.
    Thank you both my brothers.

    I want you both to realize how important the fellowship and support is that you have so freely offered to a total stranger. When I had my lymph node removed it was 8 1/2 months after the ENT doctors first told me that there was something wrong with the solid mass that it had become and that it needed to be removed asap. Due to the timing of the onset of court hearings to prove "immediate danger" to the court and several delays and reschedules that followed, I ended up having to cancel the surgery four times. Then three weeks ago I ended up in the ER in debilitating pain in the lymph node area and was told it had to come out and that I had possibly waited too long. On Dec. 16th they removed it and then a week later I was told that I had Squamous Cell cancer with an unknown primary. I was overrun with fear, fear for my children's future and their safety, for if something happened to me they could possibly be forced to go back. That's when I accidentally found this site and met you. You, with your kind words and never ending support while at the same time reflecting the love of our Lord. That is what pulled me out of deep depression and the fear that was numbing me. I don't know what the outcome is going to be after the surgery in the next few hours, but before I leave I just wanted you all to know that you were successful in reminding me "Who's" in charge and that it's not me, nor the fear that was consuming me, but you made me remember that it's the God who carried me through pancreatic cancer in 2001, that has turned a boy's prognosis of only two months to live to now having a miraculously healing liver and who's leukemia is now in remission. That it was God that gave me the words and strength to fight against several highly trained attorney's for my children and to win custody. I just wanted you to know what you actually did for me before I leave for surgery, that what you do here and the manner in which you do what you do here is a wonderful blessing my friends.

    May the Lord richly bless you all

    Chefdaddy Mike

    I am sitting here in tears.
    I am sitting here in tears. Tears of joy for Chefdaddy. Please may the Lord help him. And for him to always remember that light....at the end of the tunnel. It will be difficult. I KNOW you will pull this through Chefdaddy! With all of the wonderful miracles you've had so far....things will turn out for you and your family. And it will take time. Time is OK. I too have and will pray for you Chefdaddy:)

    Cindy
  • delnative
    delnative Member Posts: 450
    Chefdaddy said:

    Thank you both my brothers.
    Thank you both my brothers.

    I want you both to realize how important the fellowship and support is that you have so freely offered to a total stranger. When I had my lymph node removed it was 8 1/2 months after the ENT doctors first told me that there was something wrong with the solid mass that it had become and that it needed to be removed asap. Due to the timing of the onset of court hearings to prove "immediate danger" to the court and several delays and reschedules that followed, I ended up having to cancel the surgery four times. Then three weeks ago I ended up in the ER in debilitating pain in the lymph node area and was told it had to come out and that I had possibly waited too long. On Dec. 16th they removed it and then a week later I was told that I had Squamous Cell cancer with an unknown primary. I was overrun with fear, fear for my children's future and their safety, for if something happened to me they could possibly be forced to go back. That's when I accidentally found this site and met you. You, with your kind words and never ending support while at the same time reflecting the love of our Lord. That is what pulled me out of deep depression and the fear that was numbing me. I don't know what the outcome is going to be after the surgery in the next few hours, but before I leave I just wanted you all to know that you were successful in reminding me "Who's" in charge and that it's not me, nor the fear that was consuming me, but you made me remember that it's the God who carried me through pancreatic cancer in 2001, that has turned a boy's prognosis of only two months to live to now having a miraculously healing liver and who's leukemia is now in remission. That it was God that gave me the words and strength to fight against several highly trained attorney's for my children and to win custody. I just wanted you to know what you actually did for me before I leave for surgery, that what you do here and the manner in which you do what you do here is a wonderful blessing my friends.

    May the Lord richly bless you all

    Chefdaddy Mike

    Powerful words
    An excellent and inspiring post, Chefdaddy Mike.
    “I sought the LORD, and he heard me, and delivered me from all my fears” (Psalm 34:4).
    You'll make it through this.

    --Jim in Delaware
  • Chefdaddy
    Chefdaddy Member Posts: 170

    I am sitting here in tears.
    I am sitting here in tears. Tears of joy for Chefdaddy. Please may the Lord help him. And for him to always remember that light....at the end of the tunnel. It will be difficult. I KNOW you will pull this through Chefdaddy! With all of the wonderful miracles you've had so far....things will turn out for you and your family. And it will take time. Time is OK. I too have and will pray for you Chefdaddy:)

    Cindy

    To all my friends,
    I was

    To all my friends,

    I was released tonight from the hospital. The surgeon removed both tonsils and didn't take any of my tongue.... Yippee! The first two days there was very little pain from the tonsils being removed or the feeding tube they implanted, but yesterday I was transported to the radiation department in a wheelchair and while waiting for the consult with the doctor the pain raised it's ugly head. An incredible amount of pain from the tonsil area and the PEG caused me to pass out. The nurses were called from my floor (10th) and they arrived and administered morphine. I was able to complete the consult but I was still in a lot of pain, especially in the PET. The muscle wall that had been penetrated for the PEG started spasming and eventually turned into an full blown abdominal Charlie Horse. Once I was returned to my floor they started doping me up to get control on the pain. Valium finally stopped the cramping. They decided to keep me another night to be safe.

    The good news! My PET scan did not show any hot spots, the final report will be in tomorrow, but so far it appears the cancer was contained to my throat area. I was told that I will have 7 weeks of radiation, 5 times per week and they are still deciding whether or not to give me chemo therapy. I told them I would rather that they would give me chemo and not take any chances. Do you think that was inappropriate telling them that?
    They did inform me that they are going to have my teeth removed before they begin the radiation. Unfortunately, I will not have any dentures for at least 6 months. I'm afraid I will look like Roy Rogers sidekick. I did put a request in early on (as suggested by you) for Magic Gargle, I came home with a bottle.

    Thank you everybody for your compassion and the priceless information you give.

    Your friend

    Chefdaddy Mike
  • Chefdaddy
    Chefdaddy Member Posts: 170

    I am sitting here in tears.
    I am sitting here in tears. Tears of joy for Chefdaddy. Please may the Lord help him. And for him to always remember that light....at the end of the tunnel. It will be difficult. I KNOW you will pull this through Chefdaddy! With all of the wonderful miracles you've had so far....things will turn out for you and your family. And it will take time. Time is OK. I too have and will pray for you Chefdaddy:)

    Cindy

    Dearest Cindy,
    Thank you so

    Dearest Cindy,

    Thank you so very much for your prayers.

    I was going to write to you earlier but I had to lie down due to all the discomfort.

    I left the hospital without any pain meds and the pharmacies closed for the holiday.

    I'm looking forward to Saturday when they reopen.

    I'm afraid I have to end this quickly as I'm having spasms around the PET and need to lie

    down again.


    I thank God for your being here.

    Chefdaddy Mike
  • Hondo
    Hondo Member Posts: 6,636 Member
    Daddy Mike

    I have been waiting to hear how you were doing and I am glad to hear that the cancer was all in just one area. I agree to get the teeth pulled out before the treatment as all it does is gives you problems down the line or for me that is how it is. Keep strong my friend as many of us here are praying you through the part of your life. The call on taking Chemo is up to you; listen to what the doctors tell you then ask as many questions as possible till you are satisfied with the answers. Just remember we will all be here to help you through the radiation and chemo with our prayers and support.

    May the God of our fathers continue to bless you and your children
  • Pam M
    Pam M Member Posts: 2,196
    Chefdaddy said:

    To all my friends,
    I was

    To all my friends,

    I was released tonight from the hospital. The surgeon removed both tonsils and didn't take any of my tongue.... Yippee! The first two days there was very little pain from the tonsils being removed or the feeding tube they implanted, but yesterday I was transported to the radiation department in a wheelchair and while waiting for the consult with the doctor the pain raised it's ugly head. An incredible amount of pain from the tonsil area and the PEG caused me to pass out. The nurses were called from my floor (10th) and they arrived and administered morphine. I was able to complete the consult but I was still in a lot of pain, especially in the PET. The muscle wall that had been penetrated for the PEG started spasming and eventually turned into an full blown abdominal Charlie Horse. Once I was returned to my floor they started doping me up to get control on the pain. Valium finally stopped the cramping. They decided to keep me another night to be safe.

    The good news! My PET scan did not show any hot spots, the final report will be in tomorrow, but so far it appears the cancer was contained to my throat area. I was told that I will have 7 weeks of radiation, 5 times per week and they are still deciding whether or not to give me chemo therapy. I told them I would rather that they would give me chemo and not take any chances. Do you think that was inappropriate telling them that?
    They did inform me that they are going to have my teeth removed before they begin the radiation. Unfortunately, I will not have any dentures for at least 6 months. I'm afraid I will look like Roy Rogers sidekick. I did put a request in early on (as suggested by you) for Magic Gargle, I came home with a bottle.

    Thank you everybody for your compassion and the priceless information you give.

    Your friend

    Chefdaddy Mike

    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
  • Chefdaddy
    Chefdaddy Member Posts: 170
    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

    Dear Pam,
    The on slot of

    Dear Pam,

    The on slot of pain that hit me hard was in the stomach accompanied with lots of transitory pain all around it. The pain above the PEG site was bad enough that they ran an EKG in case it was my heart. It's hard to describe but just now while getting up from my recliner to come to the computer and as my daughter was helping me out of the chair it felt like the interior part of the PEG got out of place or caught on something. If I remain still it's okay until the spasms kick in, but I think the Valium will help stop that.

    Thank you for your kind words for me and my children.

    God bless you all

    Chefdaddy Mike
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Hondo said:

    Daddy Mike

    I have been waiting to hear how you were doing and I am glad to hear that the cancer was all in just one area. I agree to get the teeth pulled out before the treatment as all it does is gives you problems down the line or for me that is how it is. Keep strong my friend as many of us here are praying you through the part of your life. The call on taking Chemo is up to you; listen to what the doctors tell you then ask as many questions as possible till you are satisfied with the answers. Just remember we will all be here to help you through the radiation and chemo with our prayers and support.

    May the God of our fathers continue to bless you and your children

    Hi Hondo,
    The final results

    Hi Hondo,

    The final results of the PET scan are still not in as far as the possibility of cancer in some of the other parts of the throat and head. They said that if it turns out that there is they will not do more surgery but radiate the area more.
    What do you think Hondo as far as whether or not to push for chemotherapy as well?

    I get a bit confused when it seems like the doctors are getting ready to flip a coin as far as doing chemo.

    Your friend
    Chefdaddy Mike
  • Dazey
    Dazey Member Posts: 91
    Chefdaddy said:

    To all my friends,
    I was

    To all my friends,

    I was released tonight from the hospital. The surgeon removed both tonsils and didn't take any of my tongue.... Yippee! The first two days there was very little pain from the tonsils being removed or the feeding tube they implanted, but yesterday I was transported to the radiation department in a wheelchair and while waiting for the consult with the doctor the pain raised it's ugly head. An incredible amount of pain from the tonsil area and the PEG caused me to pass out. The nurses were called from my floor (10th) and they arrived and administered morphine. I was able to complete the consult but I was still in a lot of pain, especially in the PET. The muscle wall that had been penetrated for the PEG started spasming and eventually turned into an full blown abdominal Charlie Horse. Once I was returned to my floor they started doping me up to get control on the pain. Valium finally stopped the cramping. They decided to keep me another night to be safe.

    The good news! My PET scan did not show any hot spots, the final report will be in tomorrow, but so far it appears the cancer was contained to my throat area. I was told that I will have 7 weeks of radiation, 5 times per week and they are still deciding whether or not to give me chemo therapy. I told them I would rather that they would give me chemo and not take any chances. Do you think that was inappropriate telling them that?
    They did inform me that they are going to have my teeth removed before they begin the radiation. Unfortunately, I will not have any dentures for at least 6 months. I'm afraid I will look like Roy Rogers sidekick. I did put a request in early on (as suggested by you) for Magic Gargle, I came home with a bottle.

    Thank you everybody for your compassion and the priceless information you give.

    Your friend

    Chefdaddy Mike

    Good news about the PET scan
    Good news about the PET scan - hope your peg site stops being a problem for you quickly. I also had no uptake on the PET scan prior to treatment. Between that, the CAT scan and multiple biopsies in the mouth, the treatment recommended by Sloan Kettering was IMRT radiation only. I was not able to commute to NYC or WEstchester every day so they found a radiation center closer to my home that did (does) IMRT and arranged treatment there. I completed 6 weeks of treatment and the CAT scan the following month shows normal. I was told the radiation would get anything in my neck, so no surgery (aside from the removal of the one lymph node) and no chemo would be necessary. I did not have a PEG tube .....I managed to get nutrition....lost 30 pounds...but was able to eat foods with nutritional drinks (Boost)...still have some side effects, but know they should lessen with time.

    I know how difficult it is to try to wrap your brain around what is happening and what the choices are.....and not to forget the other parts of your life .....your children....You can and will get through this. You have so many supporters on this site and we are all your cheerleaders and all have great information to share. May the angels surround you with their wings and help you through this difficult time. Dazey
  • Hondo
    Hondo Member Posts: 6,636 Member
    Chefdaddy said:

    Hi Hondo,
    The final results

    Hi Hondo,

    The final results of the PET scan are still not in as far as the possibility of cancer in some of the other parts of the throat and head. They said that if it turns out that there is they will not do more surgery but radiate the area more.
    What do you think Hondo as far as whether or not to push for chemotherapy as well?

    I get a bit confused when it seems like the doctors are getting ready to flip a coin as far as doing chemo.

    Your friend
    Chefdaddy Mike

    Daddy Mike
    I truly wish I knew the correct answer, I sometimes wonder if I would have done the Radiation and Chemo the first time if I would have been spared have to do it the second time. But then I realize that it does not matter because my friend Jesus was there holding my hand all the way through.

    I will tell you this, make it a matter of daily prayer asking God to lead you to the right discussion, and then sit all your doctors down in one place if possible and ask them, what the odds are if you take chemo and if you don’t take chemo. Believe that God will lead you in the right choice and clam the promise in Hebrews 11.1: Now faith is the substance of things hoped for, the evidence of things not seen.

    I know that my friend Jesus will be there for you too just reach out to him in faith. What ever discussion you make will be the right one.

    God bless and remember we are praying for you.
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Dazey said:

    Good news about the PET scan
    Good news about the PET scan - hope your peg site stops being a problem for you quickly. I also had no uptake on the PET scan prior to treatment. Between that, the CAT scan and multiple biopsies in the mouth, the treatment recommended by Sloan Kettering was IMRT radiation only. I was not able to commute to NYC or WEstchester every day so they found a radiation center closer to my home that did (does) IMRT and arranged treatment there. I completed 6 weeks of treatment and the CAT scan the following month shows normal. I was told the radiation would get anything in my neck, so no surgery (aside from the removal of the one lymph node) and no chemo would be necessary. I did not have a PEG tube .....I managed to get nutrition....lost 30 pounds...but was able to eat foods with nutritional drinks (Boost)...still have some side effects, but know they should lessen with time.

    I know how difficult it is to try to wrap your brain around what is happening and what the choices are.....and not to forget the other parts of your life .....your children....You can and will get through this. You have so many supporters on this site and we are all your cheerleaders and all have great information to share. May the angels surround you with their wings and help you through this difficult time. Dazey

    Thank you Dazey for your
    Thank you Dazey for your support and compassion.

    The biggest problem that I am experiencing at this time is the pain medications. I'm allergic to most of them and if I do take them I can only take a fractional amount of the normal dosage. After both surgeries, removing the lymph node and the tonsils, they had a very difficult time stableizing me in recovery. The pain meds bring on the same symptoms as Vertigo and also messes with the beat rate of my heart. I took a 1/4 dose of liquid Vicodin a little while ago and my clothes are now saturated with sweat. I'm very concerned what I can do after the radiation begins to control the pain.

    You are absolutely right about trying to take in all of this and try to be dad at the same time. It's sometimes overwhelming but that's what prayer is all about!

    My prayers are with you and your recovery as well.

    Chefdaddy Mike
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    Hondo said:

    Daddy Mike
    I truly wish I knew the correct answer, I sometimes wonder if I would have done the Radiation and Chemo the first time if I would have been spared have to do it the second time. But then I realize that it does not matter because my friend Jesus was there holding my hand all the way through.

    I will tell you this, make it a matter of daily prayer asking God to lead you to the right discussion, and then sit all your doctors down in one place if possible and ask them, what the odds are if you take chemo and if you don’t take chemo. Believe that God will lead you in the right choice and clam the promise in Hebrews 11.1: Now faith is the substance of things hoped for, the evidence of things not seen.

    I know that my friend Jesus will be there for you too just reach out to him in faith. What ever discussion you make will be the right one.

    God bless and remember we are praying for you.

    Amen
    Very well spoken, Hondo. And so very true.

    Chef- have they spoken to you of liquid morphine? I was on it in weeks 2 and 3, and 5 and 6. Never had the liquid vicodin- but was on the pill form when not using the morph. Had to cut the pills up to swallow, as they are large, but it went-down okay. Might be early for you to be on the morph, but if it is needed to get your thru it- so be it. I do urge caution on it's use: scary stuff, that'll likely render you incapable of driving, etc., and you will notice digestive changes. Still, it does help bigtime with the pain/bad times.

    As for getting chemo and rad, together- that's what was done to/for me. My Oto told me that radiation, alone, was the old way, and fault is known with that. Told me testing was done with both c&r, and they stopped the testing in short order, because the results of getting both at the same time was so much better, that it was a medical no-brainer. U of Iowa swears by it. Know a man with head and neck that several years ago was only treated with rads, and a year and 1/2-ago had to go thru a 14-hour Op., with major consequences that are still with him- and the U of Iowa Drs. told his wife it probably could have been prevented if his initial treatment was with both c & r. Your C may be different than his, or mine.


    In my prayers, Chef- you, and your kids. Believe.

    kcass
  • Scambuster
    Scambuster Member Posts: 973
    Chefdaddy said:

    Dear Pam,
    The on slot of

    Dear Pam,

    The on slot of pain that hit me hard was in the stomach accompanied with lots of transitory pain all around it. The pain above the PEG site was bad enough that they ran an EKG in case it was my heart. It's hard to describe but just now while getting up from my recliner to come to the computer and as my daughter was helping me out of the chair it felt like the interior part of the PEG got out of place or caught on something. If I remain still it's okay until the spasms kick in, but I think the Valium will help stop that.

    Thank you for your kind words for me and my children.

    God bless you all

    Chefdaddy Mike

    PEG Pain Maybe trapped Gas
    HI Mike,

    I recall now when my PEG was freshly in I had severe pain around the PEG on a couple of occasions which felt like it had pulled out or been dislodged. It turns out it was trapped gas so I had to aspirate the PEG. that was just getting the large empty Syringe they should have given you, and plugging it in to your PEG and opening the valve. Alternatively, you can stand next to your bathroom basin and just open the open the valve over the basin and see if there is any gas or pressurized liquid causing the pain. If gas and some liquid comes out, that may be the cause of your pain.

    This may or may not be the cause of the pain but worth a try as it won't do you any harm to aspirate.

    I also used the PEG to take most of my meds. I had to crush up the Vicodin and other pills and mix with warm water and inject through the PEG with the same big syringe. That reduces the need to take big pills orally which may be an issue if you do start Radiotherapy.

    I also used Panadol (Paracetamol) for the post surgery pain with some success but be SURE NOT to exceed the recommended dose as it can shut down your Liver and cause grave consequences.

    Sending light your way.
    Scambuster
  • picadilly217
    picadilly217 Member Posts: 3
    Chefdaddy said:

    Thank you Mike!
    I am so very

    Thank you Mike!

    I am so very thankful that I accidentally stumbled onto this site, I'm sure the Lord was quietly directing me. When I got custody early this year, I moved to get my son closer to the children's cancer hospital here in Portland Or., so I'm not familiar with anything outside of his hospital. On Monday, while getting the PET and CT, I hope to make contact with a Social Worker and see if there is anything that can be done to assist my daughter in caring for me during the rough times I've been reading about. If I were healthy, other than the cancer issue, I wouldn't be so scared, but having a chronic cough due to lung damage as well as having a rare blood disorder along with being a diabetic (they took most of my pancreas before)I'm very worried about these issues causing unnecessary problems and messing up the recovery process.

    I want to thank you and everyone else that contributes to this site, for me it's priceless!

    Thank you again

    Chefdaddy

    I am new to this site but here to share
    I was diagnosed with stage 4 cancer in the throat and it had already spread to lymph nodes on both sides of my neck..Have had the big surgery and was able to keep my voice and now waiting for the end of Jan to start the radiation process. I have already survived lung cancer (1985) and now at 59 I am in the fight again. I noticed you had some questions about radiation and other details.....Talk to your ENT!!!!! he should map it all out for you, so there are no surprises. Even though everyone feels things differently we all have the same fears and I know I need the input of others going through this so if I can help you in any way....feel free to call upon me.
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Kent Cass said:

    Amen
    Very well spoken, Hondo. And so very true.

    Chef- have they spoken to you of liquid morphine? I was on it in weeks 2 and 3, and 5 and 6. Never had the liquid vicodin- but was on the pill form when not using the morph. Had to cut the pills up to swallow, as they are large, but it went-down okay. Might be early for you to be on the morph, but if it is needed to get your thru it- so be it. I do urge caution on it's use: scary stuff, that'll likely render you incapable of driving, etc., and you will notice digestive changes. Still, it does help bigtime with the pain/bad times.

    As for getting chemo and rad, together- that's what was done to/for me. My Oto told me that radiation, alone, was the old way, and fault is known with that. Told me testing was done with both c&r, and they stopped the testing in short order, because the results of getting both at the same time was so much better, that it was a medical no-brainer. U of Iowa swears by it. Know a man with head and neck that several years ago was only treated with rads, and a year and 1/2-ago had to go thru a 14-hour Op., with major consequences that are still with him- and the U of Iowa Drs. told his wife it probably could have been prevented if his initial treatment was with both c & r. Your C may be different than his, or mine.


    In my prayers, Chef- you, and your kids. Believe.

    kcass

    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