Chef Trek

Chefdaddy
Chefdaddy Member Posts: 170
edited March 2014 in Head and Neck Cancer #1
I apologize it took me so long to get a new thread started. I had looked all over the site for the "new thread" button and it was right in front of me the whole time. I'm blaming starvation and pain! lol

Thank you everyone for your support and prayers.

Mike
«134567

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Pain & Starvation
    Hi Mike,

    Glad to see you on here, hope all is settling down a little for you, or at least becoming somewhat routine. Hang in there guy, it's a rough road, but you can do it....looking forward to a get together in the future.

    God Bless You and the kids,
    John
  • Chefdaddy
    Chefdaddy Member Posts: 170
    #3
    Skiffin16 said:

    Pain & Starvation
    Hi Mike,

    Glad to see you on here, hope all is settling down a little for you, or at least becoming somewhat routine. Hang in there guy, it's a rough road, but you can do it....looking forward to a get together in the future.

    God Bless You and the kids,
    John

    Hi John,
    I named my throat
    Hi John,

    I named my throat after my ex-wife, a relentless fiery b*%$h!

    I'm hoping they get the canned food issue resolved quickly, I'm becoming too weak and the chemo people are going to stop treatment if I lose anymore weight.

    Good to hear from you, got to take off for another cooking session.

    Your friend
    Mike
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Mike

    I love the ex-wife throat thing, be carful my friend and take care
  • Fire34
    Fire34 Member Posts: 365
    #5
    Chefdaddy said:

    Hi John,
    I named my throat
    Hi John,

    I named my throat after my ex-wife, a relentless fiery b*%$h!

    I'm hoping they get the canned food issue resolved quickly, I'm becoming too weak and the chemo people are going to stop treatment if I lose anymore weight.

    Good to hear from you, got to take off for another cooking session.

    Your friend
    Mike

    Throat Pain
    Mike
    When I got my treatments I was put on Fetanyl patches that seemed to work a little and some morphine as needed. The university of Chicago had the same threshold for weight loss and when I passed it they placed a tube. Are you on 5FU? They say that has nasty side effects for the mouth/throat area. I was and must have been lucky as my sided effects were contained to the mouth area and diflucan worked wonders. I am still glad I had the tube as the mucous buildup also made swallowing was very difficult. Keep a positive attitude and as I have said before a great support person makes things easier. Good Luck
  • Glenna M
    Glenna M Member Posts: 1,576
    #6
    Hondo said:

    Mike

    I love the ex-wife throat thing, be carful my friend and take care

    Getting caught up...
    I'm glad you started a new thread as I was getting confused trying to find the new responses - LOL

    Haven't been on for 4 days so it's taking me a while to catch up on all of the new posts. We had a bad storm and lost our power for 4 days. We take for granted everything we use that takes electricity until we lose it ;-( Life is finally back to normal and we have heat again - winters are cold enough in New Hampshire without trying to survive them without heat.

    I hope you continue to improve Mike and your life can get back to some form of "normalcy".

    Keep up the good fight and keep us posted.

    Your friend,
    Glenna
  • stevenl
    stevenl Member Posts: 587
    #7
    Glenna M said:

    Getting caught up...
    I'm glad you started a new thread as I was getting confused trying to find the new responses - LOL

    Haven't been on for 4 days so it's taking me a while to catch up on all of the new posts. We had a bad storm and lost our power for 4 days. We take for granted everything we use that takes electricity until we lose it ;-( Life is finally back to normal and we have heat again - winters are cold enough in New Hampshire without trying to survive them without heat.

    I hope you continue to improve Mike and your life can get back to some form of "normalcy".

    Keep up the good fight and keep us posted.

    Your friend,
    Glenna

    Sequel title
    Hey chef, catchy sequel title much better than Planet of the chefs. Prayin and hopin and hopin and prayin. Uh oh showing my age again. Hang in there Chef!!!

    Steve
  • Chefdaddy
    Chefdaddy Member Posts: 170
    #8
    stevenl said:

    Sequel title
    Hey chef, catchy sequel title much better than Planet of the chefs. Prayin and hopin and hopin and prayin. Uh oh showing my age again. Hang in there Chef!!!

    Steve

    Hi Fire34,
    I'm not familiar
    Hi Fire34,

    I'm not familiar with 5FU. I have a PEG, but I'm very allergic to the Iodine that is apparently in all canned food for PEG feeding. My radiation doctor ordered an emergency consult with the hospitals nutritionist to figure out feeding options. This is my first morning waking up with the Fentanyl patch on. so far the pain seems not quite as intense but still to painful to swallow anything. Thank you for your response.

    Hi Hondo,
    LoL, it seemed appropriate.


    Hi John,

    Age and gravity both suck! LOL

    I'm running (okay, crawling) off to radiation.

    Bless you all

    Mike
  • Fire34
    Fire34 Member Posts: 365
    #9
    Chefdaddy said:

    Hi Fire34,
    I'm not familiar
    Hi Fire34,

    I'm not familiar with 5FU. I have a PEG, but I'm very allergic to the Iodine that is apparently in all canned food for PEG feeding. My radiation doctor ordered an emergency consult with the hospitals nutritionist to figure out feeding options. This is my first morning waking up with the Fentanyl patch on. so far the pain seems not quite as intense but still to painful to swallow anything. Thank you for your response.

    Hi Hondo,
    LoL, it seemed appropriate.


    Hi John,

    Age and gravity both suck! LOL

    I'm running (okay, crawling) off to radiation.

    Bless you all

    Mike

    5FU
    Chef
    5FU is short for 5 fluorauracil it was a chemo drug I had while inpatient, we those of us in the study, were on it for 5 days 24 hours. I have seen some people go home with a pump. But I believe my problems were a combination of 5FU and radiaition. They started me out on ensure plus and after that was not working I was put on IsoSource 1.5 cal which seemd to work best for me. Trouble for me I was not able to put enough cans in between radiation treaments. I started using gravity instead of that stupid bag and go closer to what they wanted. Hope this helps. Good luck to everyone
    Dave
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #10
    Good to hear from you
    Glad that you started a new thread. Cannot pull up any lengthy threads between this site that crawls, and my cruddy DSL connection.

    I hope that you can figure out the food thing. I am not sure if I told you that I also supplimented my canned nutrition with baby food, and activia yogurt because I was having trouble with getting enough potassium, fibre, and calories. If it was a little thick, I would add some water, or put the baby food in with the canned formula. Sweet potato, banana, and squash were the ones I used most.

    I was on 75mcgs of fentanyl, and at the peak of the pain I would not want to know what it would have been like without it.

    Hang in there. Still praying for you.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
    sweetblood22 said:

    Good to hear from you
    Glad that you started a new thread. Cannot pull up any lengthy threads between this site that crawls, and my cruddy DSL connection.

    I hope that you can figure out the food thing. I am not sure if I told you that I also supplimented my canned nutrition with baby food, and activia yogurt because I was having trouble with getting enough potassium, fibre, and calories. If it was a little thick, I would add some water, or put the baby food in with the canned formula. Sweet potato, banana, and squash were the ones I used most.

    I was on 75mcgs of fentanyl, and at the peak of the pain I would not want to know what it would have been like without it.

    Hang in there. Still praying for you.

    Iodine?
    Iodine in the Jevity, Chef? If you have a PEG, you got the system in place. Had not thought of baby food, but the Gerber route might be worth looking-into. I used 4.0 Jevity for some 8 weeks, and ate nothing, and lost some 17% of my body weight. Not sure if you could find something you could put into a blender that might help. Structure of the PEG as it is, one can't get away from the liquidity form. Was told, early on, that if I ran out of the formula, that Ensure or Boost could tide me over until I got the formula. Hope things get better for you, Chef.

    As for the pain(s)- morph and magic mouthwash, and minor-dosages of Xanax, got me thru the worst of it. And, when not on the morph, then I did use chopped-up Vicodin. Would not advise anyone to use the morph, but remind everyone that one must do what is necessary to make it thru the treatment battle. Getting thru it all is Priority-One, when in treatment. And, people, this is C. Not sure about the fentanyl patch thing. Seems the hands-on morph doseage is something one can have better control of.

    Did get the Flourouracil, too. My treatment was different from any others that I know of: 96-hours of Cisplatin and Flourouracil in two pumps w/bags at the start of weeks #1 and #4, while getting the full H&N rads. Was incapable of any rads in weeks #5 and #6, with a hospital stay in #6. I always figured it was the combo of Cisplatin and rads that did the number on me, but it mighta been both the Chemo meds with the rads, which includes the FU5.

    Hope you can find what you need for nutrition, Chef. Can one grind-up one-a-day multivitamins? You gotta get the nutrition into you, my friend. Hope you can find a way.

    Believe.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
    daddy Mike
    I hope things are going a little better for you today then they have the last few days. I lost one of my best friends yesterday that I have worked with for many many years, somehow while driving to work his SUV flipped over and through him out killing him on the spot, he was only 55. I get so tired of this life of sickness and suffering and having to see people I care about go through trials that sometimes seam so unnecessary. Please take care Mike I want nothing more then to someday be able to meet you and your children, I hope and pray everyday for you my friend.
  • Pam M
    Pam M Member Posts: 2,196
    #13
    Hondo said:

    daddy Mike
    I hope things are going a little better for you today then they have the last few days. I lost one of my best friends yesterday that I have worked with for many many years, somehow while driving to work his SUV flipped over and through him out killing him on the spot, he was only 55. I get so tired of this life of sickness and suffering and having to see people I care about go through trials that sometimes seam so unnecessary. Please take care Mike I want nothing more then to someday be able to meet you and your children, I hope and pray everyday for you my friend.

    Sorry, Hondo
    Very sorry to hear about the loss of your friend, Hondo.
  • Chefdaddy
    Chefdaddy Member Posts: 170
    #14
    Pam M said:

    Sorry, Hondo
    Very sorry to hear about the loss of your friend, Hondo.

    Hondo, I'm so terribly sorry
    Hondo, I'm so terribly sorry for your loss of a good friend. I too feel the same way about all the suffering and losing people we care about. There is little I can say to you at this time that will pick you up other than I know your strong faith in God will help in buffering some of the pain.

    Call me if you want to talk my friend. Anytime!

    Mike
  • pk
    pk Member Posts: 192
    #15
    Hondo said:

    daddy Mike
    I hope things are going a little better for you today then they have the last few days. I lost one of my best friends yesterday that I have worked with for many many years, somehow while driving to work his SUV flipped over and through him out killing him on the spot, he was only 55. I get so tired of this life of sickness and suffering and having to see people I care about go through trials that sometimes seam so unnecessary. Please take care Mike I want nothing more then to someday be able to meet you and your children, I hope and pray everyday for you my friend.

    Hondo
    Thinking about you at this time of loss. My best friend died 3 yrs ago from complications of MS. I miss her and think of her everyday. We are so blessed to have these great friends in our lives. They love us and support us, and when they are gone there is such a void. Take care.
    Phyllis
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    Hondo said:

    daddy Mike
    I hope things are going a little better for you today then they have the last few days. I lost one of my best friends yesterday that I have worked with for many many years, somehow while driving to work his SUV flipped over and through him out killing him on the spot, he was only 55. I get so tired of this life of sickness and suffering and having to see people I care about go through trials that sometimes seam so unnecessary. Please take care Mike I want nothing more then to someday be able to meet you and your children, I hope and pray everyday for you my friend.

    Loss
    Sorry for the loss of your friend Tim....

    John
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #17
    Chefdaddy said:

    Hi Fire34,
    I'm not familiar
    Hi Fire34,

    I'm not familiar with 5FU. I have a PEG, but I'm very allergic to the Iodine that is apparently in all canned food for PEG feeding. My radiation doctor ordered an emergency consult with the hospitals nutritionist to figure out feeding options. This is my first morning waking up with the Fentanyl patch on. so far the pain seems not quite as intense but still to painful to swallow anything. Thank you for your response.

    Hi Hondo,
    LoL, it seemed appropriate.


    Hi John,

    Age and gravity both suck! LOL

    I'm running (okay, crawling) off to radiation.

    Bless you all

    Mike

    back
    hi, Chef. I"m sorry you're in so much pain and I will pray for you as I always do. How did court go? I hope everything went the way you wanted it to. You have enuf on your plate w/o worrying about your mean X...lol. I pray you are feeling much better very soon.

    All, I am 21 weeks post rad trmnts. My tastebuds had come back for a while but are messed up again now. My hands shake really bad sometimes, I feel hair on my cheek when it isn't there, my pupils are very big and stay that way all day, i become very dizzy several times and day and ofter stumble (like a drunk) when I walk. Have any of you experienced these things? I am not sure what to think but it is becoming a real hassel. It is bringing me down and making me wondering if I'll ever get to the point where I feel half way normal. It seems like each new day brings a new side effect. It is honestly dishartening.

    Thank you in advance and God Bless!
    Debbie
  • Chefdaddy
    Chefdaddy Member Posts: 170
    #18
    pk said:

    Hondo
    Thinking about you at this time of loss. My best friend died 3 yrs ago from complications of MS. I miss her and think of her everyday. We are so blessed to have these great friends in our lives. They love us and support us, and when they are gone there is such a void. Take care.
    Phyllis

    Update
    Hi everyone,

    I finally have internet!!!!!

    Here's an update.

    This morning I awoke to the worst pain I've felt in my mouth and throat so far, it put me in tears before I could get out of bed. The Magic mouthwash didn't work and then I went to the straight Lidocaine, but that didn't phase it either. The Fentynal patch did nothing as it was a lower dosage.

    Later, when I arrived for my radiation treatment I told the technician of the pain and when the procedure was over I was told to wait as the nurse wanted to see me. She examined my mouth and then had the doctor come see me. After he did his inspection of my mouth he told me that I was very cooked and if I couldn't get the pain under control he would have to stop the radiation treatments. He then told me to wear two patches and then he called several pharmacies looking for Fentynal lolly-pops on a stick. It turned out that the pharmacy there at the hospital had them in stock. They are extremely fast acting and strong.
    He told me to suck on one for about 10 minutes to see how it was affecting me, it took me about three minutes and I felt it kicking in so I stopped. Amazing stuff!

    As far as the PEG food problems, the nutritionist for the company that supplies the canned
    PEG food called me to inform me that they could not find any that didn't have Iodine, but they were still researching it. I bought several jars of baby food and I'm trying it watered down a little bit so it will flow through the tube. They are also hydrating me everyday now, 2 liters, I think I'm going to grow gills! LOL

    My gums are very swollen now from the cooking, as well as from the bone chips trying to work their way out, I can no longer close my mouth. A new radiation technician was putting my mask on me and it wasn't going down smoothly, so she started hitting the mask to force it down, which was also hitting my swollen bleeding lips and gums. I became rather rude at that point.

    I'm hoping that the baby food will work until they can find a pre-made canned food for the PEG.

    Take care everyone, and have a great weekend.

    Your friend
    Mike
  • Scambuster
    Scambuster Member Posts: 973
    #19
    Chefdaddy said:

    Update
    Hi everyone,

    I finally have internet!!!!!

    Here's an update.

    This morning I awoke to the worst pain I've felt in my mouth and throat so far, it put me in tears before I could get out of bed. The Magic mouthwash didn't work and then I went to the straight Lidocaine, but that didn't phase it either. The Fentynal patch did nothing as it was a lower dosage.

    Later, when I arrived for my radiation treatment I told the technician of the pain and when the procedure was over I was told to wait as the nurse wanted to see me. She examined my mouth and then had the doctor come see me. After he did his inspection of my mouth he told me that I was very cooked and if I couldn't get the pain under control he would have to stop the radiation treatments. He then told me to wear two patches and then he called several pharmacies looking for Fentynal lolly-pops on a stick. It turned out that the pharmacy there at the hospital had them in stock. They are extremely fast acting and strong.
    He told me to suck on one for about 10 minutes to see how it was affecting me, it took me about three minutes and I felt it kicking in so I stopped. Amazing stuff!

    As far as the PEG food problems, the nutritionist for the company that supplies the canned
    PEG food called me to inform me that they could not find any that didn't have Iodine, but they were still researching it. I bought several jars of baby food and I'm trying it watered down a little bit so it will flow through the tube. They are also hydrating me everyday now, 2 liters, I think I'm going to grow gills! LOL

    My gums are very swollen now from the cooking, as well as from the bone chips trying to work their way out, I can no longer close my mouth. A new radiation technician was putting my mask on me and it wasn't going down smoothly, so she started hitting the mask to force it down, which was also hitting my swollen bleeding lips and gums. I became rather rude at that point.

    I'm hoping that the baby food will work until they can find a pre-made canned food for the PEG.

    Take care everyone, and have a great weekend.

    Your friend
    Mike

    Food Alternative
    HI Chef,

    I posted previously but not sure if you got it. I used Vitashake to get me through as couldn't tolerate anything the Hospital had or even the hospital 'Nutritionist ' had specially made for me.

    I found Vitashake myself in a desperate search & luckily they had a distribution centre in HK where I was treated. I hate the fact it is a Multi-level Marketing outfit BUT it kept me alive for the 2 months I couldn't eat. I still take one a day and haven't had a cold or flu since and apart from my Saliva i feel great.

    It's all natural so you should have no adverse reactions to it.

    My wife joined as a member so we get the 20% discount so it's about $2USD a feed and will give you about 200 calories. I mixed with Rice milk and got an extra 200 Calories there. 4-5 feeds a day through your Peg will keep you alive and well.

    My Chemo Doctor (arrogant twit) thought it was garbage and even though my weight had stabilized (I lost 44 lbs) and i was doing fine, insisted I get a PICC line jammed up through arm into my jugular. It went horrible wrong as it kinked somewhere in my shoulder and I damn near died until they pulled it out. Nurses were highly p%$ed off with the doctor. He backed off after and I survived on this stuff till well after treatment. You can read about what's in it >> http://www.besthealthfoodstore.net/sunrider_vitashake.html and also find a place to buy it. It worked for me. You need to get something going Mike so this may be a good option.

    Hang in there.
    Scambuster
  • Glenna M
    Glenna M Member Posts: 1,576
    #20
    Chefdaddy said:

    Update
    Hi everyone,

    I finally have internet!!!!!

    Here's an update.

    This morning I awoke to the worst pain I've felt in my mouth and throat so far, it put me in tears before I could get out of bed. The Magic mouthwash didn't work and then I went to the straight Lidocaine, but that didn't phase it either. The Fentynal patch did nothing as it was a lower dosage.

    Later, when I arrived for my radiation treatment I told the technician of the pain and when the procedure was over I was told to wait as the nurse wanted to see me. She examined my mouth and then had the doctor come see me. After he did his inspection of my mouth he told me that I was very cooked and if I couldn't get the pain under control he would have to stop the radiation treatments. He then told me to wear two patches and then he called several pharmacies looking for Fentynal lolly-pops on a stick. It turned out that the pharmacy there at the hospital had them in stock. They are extremely fast acting and strong.
    He told me to suck on one for about 10 minutes to see how it was affecting me, it took me about three minutes and I felt it kicking in so I stopped. Amazing stuff!

    As far as the PEG food problems, the nutritionist for the company that supplies the canned
    PEG food called me to inform me that they could not find any that didn't have Iodine, but they were still researching it. I bought several jars of baby food and I'm trying it watered down a little bit so it will flow through the tube. They are also hydrating me everyday now, 2 liters, I think I'm going to grow gills! LOL

    My gums are very swollen now from the cooking, as well as from the bone chips trying to work their way out, I can no longer close my mouth. A new radiation technician was putting my mask on me and it wasn't going down smoothly, so she started hitting the mask to force it down, which was also hitting my swollen bleeding lips and gums. I became rather rude at that point.

    I'm hoping that the baby food will work until they can find a pre-made canned food for the PEG.

    Take care everyone, and have a great weekend.

    Your friend
    Mike

    Wow - Lollipops!!
    I am so sorry to hear that you are still having so many problems with being able to control the pain but glad to hear you found the lollipops!! Does it make you feel like a little kid again?? When I was little the doctors used to give us lollipops at the end of our check ups if we were good - LOL

    I wish I could make a suggestion for some type of liquid supplement that would help you but I have no idea what ingredients are in any of them. Please be careful of any products you may buy OTC as I have read that some of them are actually harmful to you if you are undergoing treatment. Don't give up, I'm sure either the nutritionist at the company that supplies your canned food or your doctor will find something that will help you.

    Take good care of yourself and keep sucking on those lollipops ;-) I know you are probably tired of hearing people tell you that it will get better - but it will. It may seem like it's taking forever but you will get through this.

    You and your children are always in my prayers.
    Glenna
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #21
    Chefdaddy said:

    Update
    Hi everyone,

    I finally have internet!!!!!

    Here's an update.

    This morning I awoke to the worst pain I've felt in my mouth and throat so far, it put me in tears before I could get out of bed. The Magic mouthwash didn't work and then I went to the straight Lidocaine, but that didn't phase it either. The Fentynal patch did nothing as it was a lower dosage.

    Later, when I arrived for my radiation treatment I told the technician of the pain and when the procedure was over I was told to wait as the nurse wanted to see me. She examined my mouth and then had the doctor come see me. After he did his inspection of my mouth he told me that I was very cooked and if I couldn't get the pain under control he would have to stop the radiation treatments. He then told me to wear two patches and then he called several pharmacies looking for Fentynal lolly-pops on a stick. It turned out that the pharmacy there at the hospital had them in stock. They are extremely fast acting and strong.
    He told me to suck on one for about 10 minutes to see how it was affecting me, it took me about three minutes and I felt it kicking in so I stopped. Amazing stuff!

    As far as the PEG food problems, the nutritionist for the company that supplies the canned
    PEG food called me to inform me that they could not find any that didn't have Iodine, but they were still researching it. I bought several jars of baby food and I'm trying it watered down a little bit so it will flow through the tube. They are also hydrating me everyday now, 2 liters, I think I'm going to grow gills! LOL

    My gums are very swollen now from the cooking, as well as from the bone chips trying to work their way out, I can no longer close my mouth. A new radiation technician was putting my mask on me and it wasn't going down smoothly, so she started hitting the mask to force it down, which was also hitting my swollen bleeding lips and gums. I became rather rude at that point.

    I'm hoping that the baby food will work until they can find a pre-made canned food for the PEG.

    Take care everyone, and have a great weekend.

    Your friend
    Mike

    Sorry about the pain.
    I am glad that the lollipops worked for you. At the height of my pain I tried to take a tsp of liquid vicoden or something when I was on my 75mcgs of Fentanyl, and felt like I was overdosed. I did not try that again.

    I am glad you got some baby food, but that may not be enough cals and vitamins for you. I hope that they find you some thing quickly. I also had to have fluids a few times.

    Hang in there.

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