Diagnosed last Monday (Squamous Cell -throat cancer)

145791012

Comments

  • pk
    pk Member Posts: 192
    Chefdaddy said:

    Glad to hear from you!
    Hi Scambuster,

    I'm glad to hear from you, you've been on my mind. How are you doing?

    I've been curious since you first posted a response on this thread as to whether or not you live here in the States. I don't see people using Kilograms over pounds to often unless you work in medical.

    Thank you for spelling out your experience with Erbitux, I had not found too much but what appeared to be extreme reactions.

    I wish they would have kept me in the hospital longer after my two surgeries, I know I wouldn't have been ambulanced back two times in really bad shape.

    I underwent an overly long MRI last night on my shoulder. It took two hours in the MRI machine as they had to restart three times, complaining that it was coming out blurry.
    I was never claustrophobic before, but after having my shoulder painfully clamped down to the table and listening to that noise three times, I think I was starting to feel the symptoms. lol

    I hope I find out today whether I'm facing another surgery to fix my shoulder or if more cortisone shots will do the trick. Most likely not until next week.


    Today I'm in court with the kid's mother, with a mouth full of stitches, it should be very interesting! lol

    Thank you for your encouragement Scambuster.

    Mike

    mike
    Will be holding you in my heart today as you are in court. Hoping all will turn out for the best.
    Phyllis
  • Chefdaddy
    Chefdaddy Member Posts: 170
    pk said:

    mike
    Will be holding you in my heart today as you are in court. Hoping all will turn out for the best.
    Phyllis

    Thank you so very much
    Thank you so very much Phyllis.

    Everyone here is so awesome.

    Mike
  • Onmyknees4U
    Onmyknees4U Member Posts: 12
    Chefdaddy said:

    Thank you so very much
    Thank you so very much Phyllis.

    Everyone here is so awesome.

    Mike

    Court-custody-cortisone
    Chefdaddy,
    You have MORE than your share of C-words to deal with! God be with you and bless you! Tell your kids we think they are AWESOME and The Lord obviously has some VERY SPECIAL plan for their lives.They are given alot to deal with and are storing up a wealth of strength and courage beyond belief.

    LOOK FOREWARD TO YOUR NEXT POST.
    SALLY
  • Chefdaddy
    Chefdaddy Member Posts: 170

    Court-custody-cortisone
    Chefdaddy,
    You have MORE than your share of C-words to deal with! God be with you and bless you! Tell your kids we think they are AWESOME and The Lord obviously has some VERY SPECIAL plan for their lives.They are given alot to deal with and are storing up a wealth of strength and courage beyond belief.

    LOOK FOREWARD TO YOUR NEXT POST.
    SALLY

    Smiling big smiles
    Dearest Sally,

    Thank you for your wonderful words, I just read what you wrote to the kids and they were smiling big smiles.

    Court went very well, the kids new court appointed attorney is awesome. She and her partner recently were awarded numerous awards by various judicial agencies for their achievement's in their excellent work protecting children, and making families come together whenever possible.

    This was very amusing today in court, the kid's mother had recently made several derogatory remarks against the kid's attorney and several times throughout todays hearing the Judge repeatedly made a point of saying that the kids have an "excellent" attorney. Touch`e!

    We have another Status hearing in 60 days, I'm concerned as to whether I will be able to talk at that time due to the radiation burns.

    I learned this afternoon that the MRI from last night shows I have several torn tendons in my shoulder, so I guess I'm not only going to be facing surgery for that very soon, but because of this surgery the chemo doctor has now decided to not put in a PICC line but instead is scheduling to have a Port put in on Feb. 29th.

    They Doctor and staff are aware that I will have difficulty bathing and caring for my son with one arm, while trying to protect the PICC Line as well. I get my first big dose of Erbitux on the Feb. 28th through a vein and then they will use the Port once it's placed.

    I then begin the radiation Feb. 3rd. for 7 weeks.

    By the way, I checked out all of my shirts and coats and to my surprise everyone of them has a Bulls-Eye on the back! Whats up with that? LOL


    Sally, how is your son doing? Anything look positive for the possibility of a Compassionate Release? I do hope and pray it will happen for him.


    May the Lord Richly Bless you all

    Your friend always,

    Mike
  • j and d
    j and d Member Posts: 1
    Chefdaddy said:

    Smiling big smiles
    Dearest Sally,

    Thank you for your wonderful words, I just read what you wrote to the kids and they were smiling big smiles.

    Court went very well, the kids new court appointed attorney is awesome. She and her partner recently were awarded numerous awards by various judicial agencies for their achievement's in their excellent work protecting children, and making families come together whenever possible.

    This was very amusing today in court, the kid's mother had recently made several derogatory remarks against the kid's attorney and several times throughout todays hearing the Judge repeatedly made a point of saying that the kids have an "excellent" attorney. Touch`e!

    We have another Status hearing in 60 days, I'm concerned as to whether I will be able to talk at that time due to the radiation burns.

    I learned this afternoon that the MRI from last night shows I have several torn tendons in my shoulder, so I guess I'm not only going to be facing surgery for that very soon, but because of this surgery the chemo doctor has now decided to not put in a PICC line but instead is scheduling to have a Port put in on Feb. 29th.

    They Doctor and staff are aware that I will have difficulty bathing and caring for my son with one arm, while trying to protect the PICC Line as well. I get my first big dose of Erbitux on the Feb. 28th through a vein and then they will use the Port once it's placed.

    I then begin the radiation Feb. 3rd. for 7 weeks.

    By the way, I checked out all of my shirts and coats and to my surprise everyone of them has a Bulls-Eye on the back! Whats up with that? LOL


    Sally, how is your son doing? Anything look positive for the possibility of a Compassionate Release? I do hope and pray it will happen for him.


    May the Lord Richly Bless you all

    Your friend always,

    Mike

    Good evening,
    I read you are

    Good evening,
    I read you are getting a port put in and wanted to let you know it worked well for me. Once placed, it was easy to access with the needles, even without the numbing cream. With numbing cream, you won't even feel the needle. It can even be used for blood draws. I would suggest getting it put in the side that you don't use as much, just to make it easier. As for your talking concerns, I had 38 radiation treatments for my tonsil cancer, and I could talk throughout. You do have to be gentle though, and you will always need a water bottle in one hand. I had a PEG tube also and just got both out two months ago. I needed the PEG for about 4 months after treatment. I am finally beginning to gain some weight back now.

    All the best, you can do this.
    God bless you and yours,
  • Chefdaddy
    Chefdaddy Member Posts: 170
    j and d said:

    Good evening,
    I read you are

    Good evening,
    I read you are getting a port put in and wanted to let you know it worked well for me. Once placed, it was easy to access with the needles, even without the numbing cream. With numbing cream, you won't even feel the needle. It can even be used for blood draws. I would suggest getting it put in the side that you don't use as much, just to make it easier. As for your talking concerns, I had 38 radiation treatments for my tonsil cancer, and I could talk throughout. You do have to be gentle though, and you will always need a water bottle in one hand. I had a PEG tube also and just got both out two months ago. I needed the PEG for about 4 months after treatment. I am finally beginning to gain some weight back now.

    All the best, you can do this.
    God bless you and yours,

    Great comments!
    Hello j and d,

    Thank you for your input.

    I am glad you commented on all three issues. My 14 year old son has leukemia and they placed his port in the middle of his chest because at that time he was wearing a back brace that would have rubbed against it had it been placed on either side.

    He has a lot of discomfort with it because two years ago a nurse that was filling in and didn't know what she was doing de-accessed him without holding the port down with one hand as she pulled the needle out with the other hand. This caused the port to rip away from the stitches that held it in place and now it moves around and pinches him everyday. He can no longer sleep on his side because of it. He doesn't like the numbing cream so he has the nurses fill a rubber glove with ice and he holds it over the port for about 10 minutes then they access him with little discomfort.

    Because of how his has been a daily problem I didn't know what to expect of one placed on either side so thank you.

    The talking issue has been a big one for me as it has become a challenge recently having all me teeth removed and having a lot of discomfort and stitches to contend with. In 60 days I know that part of talking will be less uncomfortable so the big concern is the radiation side-effects at that time. I am very glad for you that you were able to talk during your radiation treatments, so many cannot. It makes me feel positive when I hear stories like yours.

    I am surprised to read that you needed your PEG four months after your treatments ended,is that the norm? I've read that the radiation continues to cook you after the last treatment for a while but I'm unclear as to what the normal amount of time that is and also how long the throat needs to heal itself enough to be able to start eating again.
    I think I had it in my head that I would be eating semi-soft food within two months of treatment. It sounds like that may have been just wishful thinking.

    I do thank you for helping me with these concerns, I learn so much from everyone here.

    How are you doing with everything else at this point? This whole process or "journey"
    touches so many aspects of a persons life and daily functions that it is almost overwhelming. I know that it has been this way for me to this point and I haven't even started my treatments yet!

    I will keep you and your success in my prayers.

    your friend

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

    Great comments!
    Hello j and d,

    Thank you for your input.

    I am glad you commented on all three issues. My 14 year old son has leukemia and they placed his port in the middle of his chest because at that time he was wearing a back brace that would have rubbed against it had it been placed on either side.

    He has a lot of discomfort with it because two years ago a nurse that was filling in and didn't know what she was doing de-accessed him without holding the port down with one hand as she pulled the needle out with the other hand. This caused the port to rip away from the stitches that held it in place and now it moves around and pinches him everyday. He can no longer sleep on his side because of it. He doesn't like the numbing cream so he has the nurses fill a rubber glove with ice and he holds it over the port for about 10 minutes then they access him with little discomfort.

    Because of how his has been a daily problem I didn't know what to expect of one placed on either side so thank you.

    The talking issue has been a big one for me as it has become a challenge recently having all me teeth removed and having a lot of discomfort and stitches to contend with. In 60 days I know that part of talking will be less uncomfortable so the big concern is the radiation side-effects at that time. I am very glad for you that you were able to talk during your radiation treatments, so many cannot. It makes me feel positive when I hear stories like yours.

    I am surprised to read that you needed your PEG four months after your treatments ended,is that the norm? I've read that the radiation continues to cook you after the last treatment for a while but I'm unclear as to what the normal amount of time that is and also how long the throat needs to heal itself enough to be able to start eating again.
    I think I had it in my head that I would be eating semi-soft food within two months of treatment. It sounds like that may have been just wishful thinking.

    I do thank you for helping me with these concerns, I learn so much from everyone here.

    How are you doing with everything else at this point? This whole process or "journey"
    touches so many aspects of a persons life and daily functions that it is almost overwhelming. I know that it has been this way for me to this point and I haven't even started my treatments yet!

    I will keep you and your success in my prayers.

    your friend

    Chefdaddy Mike

    Daddy Mike


    Just remember everyone is different on how well they do when talking radiation and after radiation. I did very well and was able to eat a little through the whole treatment while others had to use the PEG and still others were admitted to the hospital.

    I am praying that God will keep you all the way through it and for something after.

    Take care my friend
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member

    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.

    you
    Pic, I'm sorry to hear your new but please know you have friends here. We are either going thru it or have completed our treatments and are now in the recovery stage. You will be in our prayers. Hang it there and never give up!
    God bless you,
    Debbie
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Chefdaddy said:

    Great comments!
    Hello j and d,

    Thank you for your input.

    I am glad you commented on all three issues. My 14 year old son has leukemia and they placed his port in the middle of his chest because at that time he was wearing a back brace that would have rubbed against it had it been placed on either side.

    He has a lot of discomfort with it because two years ago a nurse that was filling in and didn't know what she was doing de-accessed him without holding the port down with one hand as she pulled the needle out with the other hand. This caused the port to rip away from the stitches that held it in place and now it moves around and pinches him everyday. He can no longer sleep on his side because of it. He doesn't like the numbing cream so he has the nurses fill a rubber glove with ice and he holds it over the port for about 10 minutes then they access him with little discomfort.

    Because of how his has been a daily problem I didn't know what to expect of one placed on either side so thank you.

    The talking issue has been a big one for me as it has become a challenge recently having all me teeth removed and having a lot of discomfort and stitches to contend with. In 60 days I know that part of talking will be less uncomfortable so the big concern is the radiation side-effects at that time. I am very glad for you that you were able to talk during your radiation treatments, so many cannot. It makes me feel positive when I hear stories like yours.

    I am surprised to read that you needed your PEG four months after your treatments ended,is that the norm? I've read that the radiation continues to cook you after the last treatment for a while but I'm unclear as to what the normal amount of time that is and also how long the throat needs to heal itself enough to be able to start eating again.
    I think I had it in my head that I would be eating semi-soft food within two months of treatment. It sounds like that may have been just wishful thinking.

    I do thank you for helping me with these concerns, I learn so much from everyone here.

    How are you doing with everything else at this point? This whole process or "journey"
    touches so many aspects of a persons life and daily functions that it is almost overwhelming. I know that it has been this way for me to this point and I haven't even started my treatments yet!

    I will keep you and your success in my prayers.

    your friend

    Chefdaddy Mike

    Port
    Morning Mike,

    I still have my port in, just gets flushed every 6 - 8 weeks right now. It's on the right center of my chest. It doesn't bother me and made the chemo treatments much easier than if I hadn't had it.

    The guy that draws bllod at the chemo center is awesome (painless and fast). So when I was just having blood drawn I preferred him to do it though my arm and vein.

    They never used cream or anything when using my port. It wasn't bad, it always stung pretty good for a few minutes, but that would go away fairly fast.

    Like Hondo says, everyone is different, as will be you. Most everything I read or heard about pripr to my entire treatment was much worse than I actually went through. I'm hoping that's yours will be easy and uneventful as well.

    John
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Skiffin16 said:

    Port
    Morning Mike,

    I still have my port in, just gets flushed every 6 - 8 weeks right now. It's on the right center of my chest. It doesn't bother me and made the chemo treatments much easier than if I hadn't had it.

    The guy that draws bllod at the chemo center is awesome (painless and fast). So when I was just having blood drawn I preferred him to do it though my arm and vein.

    They never used cream or anything when using my port. It wasn't bad, it always stung pretty good for a few minutes, but that would go away fairly fast.

    Like Hondo says, everyone is different, as will be you. Most everything I read or heard about pripr to my entire treatment was much worse than I actually went through. I'm hoping that's yours will be easy and uneventful as well.

    John

    Good morning John,
    Great to

    Good morning John,

    Great to hear from you again, how are you doing?

    Thank you for your port information, it really helps. I can finally laugh (small laugh lol)as I look back at what I've personally experienced since the beginning of this in December as I compare it to what I've read on here of how so many went through the same procedures without a problem. So, with a grin on my face, I've learned to hope for the best but plan for the worst until I finish this journey.

    I had a great consult with a new doctor yesterday over my upcoming shoulder surgery and we were kind of laughing as she went over my entire history going back to December and my first surgery. She pointed out that I didn't come into to this journey as most do, I brought along several medical conditions, some very rare, and that this has caused all the doctors, surgeons and anesthesia doctors to not take anything for granite with treating me.

    She also pointed out that this has been a great learning experience for all the resident doctors, as this is a large teaching hospital. I had to laugh when she said that, because it made me remember that every time the doctors or surgeons would do their early morning rounds, accompanied with 5 to 7 of the resident doctors, I would hear the teaching doctor say to them "normally we would.." a lot. LOL

    As my brother keeps telling me, each hurdle I get over just makes me stronger. I believe he is correct in saying that. Some hurdles seem almost impossible until you're able to recognize that you just peaked the very top, or more precisely, you made it through the worst of "that" particular hurdle, and you are now starting down the easier backside.

    I tell you John, from the bottom of my heart, if it were not for people like you and everyone else on here that has repeatedly sent me your heart felt concerns, wonderful advice and most importantly, your prayers, for me and for my children, I would still be straddled across several of those hurdles that I was desperately fighting to get over.

    I Thank you!

    Your friend

    Mike
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Chefdaddy said:

    Good morning John,
    Great to

    Good morning John,

    Great to hear from you again, how are you doing?

    Thank you for your port information, it really helps. I can finally laugh (small laugh lol)as I look back at what I've personally experienced since the beginning of this in December as I compare it to what I've read on here of how so many went through the same procedures without a problem. So, with a grin on my face, I've learned to hope for the best but plan for the worst until I finish this journey.

    I had a great consult with a new doctor yesterday over my upcoming shoulder surgery and we were kind of laughing as she went over my entire history going back to December and my first surgery. She pointed out that I didn't come into to this journey as most do, I brought along several medical conditions, some very rare, and that this has caused all the doctors, surgeons and anesthesia doctors to not take anything for granite with treating me.

    She also pointed out that this has been a great learning experience for all the resident doctors, as this is a large teaching hospital. I had to laugh when she said that, because it made me remember that every time the doctors or surgeons would do their early morning rounds, accompanied with 5 to 7 of the resident doctors, I would hear the teaching doctor say to them "normally we would.." a lot. LOL

    As my brother keeps telling me, each hurdle I get over just makes me stronger. I believe he is correct in saying that. Some hurdles seem almost impossible until you're able to recognize that you just peaked the very top, or more precisely, you made it through the worst of "that" particular hurdle, and you are now starting down the easier backside.

    I tell you John, from the bottom of my heart, if it were not for people like you and everyone else on here that has repeatedly sent me your heart felt concerns, wonderful advice and most importantly, your prayers, for me and for my children, I would still be straddled across several of those hurdles that I was desperately fighting to get over.

    I Thank you!

    Your friend

    Mike

    Been There Done That
    Thanks Mike,

    I'm just trying to let you know what I went through. I did come into it in good health. I like to say (at the time) other than having cancer, I'm in perfect health....

    I hope by this time next year, you'll have this all behind you and it will be an expreience that you can be sharing with someone new here on these forums that need to hear your experiences and how you dealt.

    Oh, and by the way...that straddling the hurdles, sounds realllly painful. So keep your chin up, your chest out and your legs high my friend.....

    John
  • klittle
    klittle Member Posts: 4
    Skiffin16 said:

    Been There Done That
    Thanks Mike,

    I'm just trying to let you know what I went through. I did come into it in good health. I like to say (at the time) other than having cancer, I'm in perfect health....

    I hope by this time next year, you'll have this all behind you and it will be an expreience that you can be sharing with someone new here on these forums that need to hear your experiences and how you dealt.

    Oh, and by the way...that straddling the hurdles, sounds realllly painful. So keep your chin up, your chest out and your legs high my friend.....

    John

    port
    Chefdaddy.

    I got my port in time for my 3rd Erbitux treatment. I'll be honest, it's the only thing about having cancer that hasn't been a complete pain in the ****. I was getting dehydrated, so it was tough to find a vein, and the port solves that issue completely. My last Erbitux dose was nearly 2 weeks ago, and I still have the stupid rash. It's lightening up on my arms and chest, but my face is still something from a horror movie. I didn't notice how bad it looked until about the 4th week of treatment in a restaurant bathroom. I came out and asked my mother "have I looked like this the entire time?" I've just started to have issues with radiation burns, with only 15 treatments left when they appeared. Sorry your doc wasn't interested in the radiacare gel. Another tip I just received was to use sunburn relief gels to assist. I hadn't thought about it earlier, but it's helping so far, especially with controlling the itching. Good luck with everything.

    Kevin
  • Chefdaddy
    Chefdaddy Member Posts: 170
    klittle said:

    port
    Chefdaddy.

    I got my port in time for my 3rd Erbitux treatment. I'll be honest, it's the only thing about having cancer that hasn't been a complete pain in the ****. I was getting dehydrated, so it was tough to find a vein, and the port solves that issue completely. My last Erbitux dose was nearly 2 weeks ago, and I still have the stupid rash. It's lightening up on my arms and chest, but my face is still something from a horror movie. I didn't notice how bad it looked until about the 4th week of treatment in a restaurant bathroom. I came out and asked my mother "have I looked like this the entire time?" I've just started to have issues with radiation burns, with only 15 treatments left when they appeared. Sorry your doc wasn't interested in the radiacare gel. Another tip I just received was to use sunburn relief gels to assist. I hadn't thought about it earlier, but it's helping so far, especially with controlling the itching. Good luck with everything.

    Kevin

    Sorry I'm late responding
    Hi Kevin,

    I submitted a response to your post but I wasn't feeling well and I didn't check to make sure it had posted.

    Thank you for explaining the Erbitux, I get my first load tomorrow in my arm, Friday they are installing a port for the rest of them.

    I can certainly relate to what you said about everything being a pain in the butt that associated with having and dealing with cancer. I'm now waiting to get the call for scheduling surgery on my shoulder.

    I tore several tendons from a condition called Frozen Shoulder Syndrome, a bi-product from one of the earlier surgeries I had this last month.

    Apparently adhesions will form, connecting the muscles, tendons and bone in the shoulder, locking them together. The doctor told me that usually it takes anywhere from nine months to two years for it to heal. In my case I over extended my arm and everything ripped.

    It's my left shoulder and I'm left handed...of course! lol

    Kevin, please continue to let me know how your are doing.

    My prayers are with you.

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

    port
    Chefdaddy.

    I got my port in time for my 3rd Erbitux treatment. I'll be honest, it's the only thing about having cancer that hasn't been a complete pain in the ****. I was getting dehydrated, so it was tough to find a vein, and the port solves that issue completely. My last Erbitux dose was nearly 2 weeks ago, and I still have the stupid rash. It's lightening up on my arms and chest, but my face is still something from a horror movie. I didn't notice how bad it looked until about the 4th week of treatment in a restaurant bathroom. I came out and asked my mother "have I looked like this the entire time?" I've just started to have issues with radiation burns, with only 15 treatments left when they appeared. Sorry your doc wasn't interested in the radiacare gel. Another tip I just received was to use sunburn relief gels to assist. I hadn't thought about it earlier, but it's helping so far, especially with controlling the itching. Good luck with everything.

    Kevin

    Looks

    Don’t worry about how you look; it will all get better again once the treatment stops. Sometimes there are a few little scars left behind, but think of yourself as being in a war, and wear your scare proudly.

    I had radiation twice to the face and looked like a French Fry both times, our bodies is an amazing piece of God work in that it was designed to make its own repaired.

    Keep joking and laughing it also helps the body to heal and keep the muscle from getting stiff.

    Take care and God be with you.
  • Hondo
    Hondo Member Posts: 6,636 Member
    Chefdaddy said:

    Sorry I'm late responding
    Hi Kevin,

    I submitted a response to your post but I wasn't feeling well and I didn't check to make sure it had posted.

    Thank you for explaining the Erbitux, I get my first load tomorrow in my arm, Friday they are installing a port for the rest of them.

    I can certainly relate to what you said about everything being a pain in the butt that associated with having and dealing with cancer. I'm now waiting to get the call for scheduling surgery on my shoulder.

    I tore several tendons from a condition called Frozen Shoulder Syndrome, a bi-product from one of the earlier surgeries I had this last month.

    Apparently adhesions will form, connecting the muscles, tendons and bone in the shoulder, locking them together. The doctor told me that usually it takes anywhere from nine months to two years for it to heal. In my case I over extended my arm and everything ripped.

    It's my left shoulder and I'm left handed...of course! lol

    Kevin, please continue to let me know how your are doing.

    My prayers are with you.

    Chefdaddy

    Daddy Mike.


    Glad to know you are still hanging in there; my prayers are for you and the children every night.

    Take cane and God bless
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Hondo said:

    Looks

    Don’t worry about how you look; it will all get better again once the treatment stops. Sometimes there are a few little scars left behind, but think of yourself as being in a war, and wear your scare proudly.

    I had radiation twice to the face and looked like a French Fry both times, our bodies is an amazing piece of God work in that it was designed to make its own repaired.

    Keep joking and laughing it also helps the body to heal and keep the muscle from getting stiff.

    Take care and God be with you.

    Scars
    I just consider scars as adding to my character...

    As I believe so do my many family and friends, they all think I'm a character....

    Take Care and Keep us updated on you and the kids...

    John
  • Hondo
    Hondo Member Posts: 6,636 Member
    Skiffin16 said:

    Scars
    I just consider scars as adding to my character...

    As I believe so do my many family and friends, they all think I'm a character....

    Take Care and Keep us updated on you and the kids...

    John

    John
    I agree you are a Character

    Take care my friend
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Hondo said:

    John
    I agree you are a Character

    Take care my friend

    Hi guys
    I've heard several people say to me that "Trials and tribulations builds your character"
    I completely disagree, I think enough of them and it makes you a character! LOL

    I thank you for all your prayers for me and the kids.

    I'm not worried about any scarring, this old face has never won a beauty contest before, so a little late for me to worry about my looks now.

    Take care my friends, God Bless you both

    Mike
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Road Trip
    Kick cancer butt Mike....we all have a meet & greet somewhere down the road.....
  • Chefdaddy
    Chefdaddy Member Posts: 170
    Skiffin16 said:

    Road Trip
    Kick cancer butt Mike....we all have a meet & greet somewhere down the road.....

    The "big load"
    Hi guys,

    I was to receive my first "big load" of Erbitux today, but an hour into the IV drip I reacted to the drug. My whole body started convulsing and shaking hard and I became very cold. I then started having bursts of pain all over my body, especially at the surgery sites, (lymph nodes, tonsils)and in my ears.

    The nurse started yelling for doctors to be called in and she stopped the IV drip and began taking vitals. I thought it may have been the Benadryl drip they had given me first as it is on the "unsafe" list of drugs if you have Porphryia, but they told me they couldn't give me the Erbitux without the Benadryl, so I told then to go ahead.

    When the doctors arrived they confirmed that I was experiencing a bad reaction to the Erbitux. They told me that if I had any chest pain they were going to take me to the ER. They administered another drug but I can't remember what it was, but about an hour later the shaking started to subside. They then had a Hematologist come in as he had a lot of experience with Porphryia. He told the chemo doctors to not give me any more until he has a chance to do some research, as he said the reaction could have been life threatening.
    I only got half of my first big load of Erbitux.

    They did tell me to go ahead with the surgery scheduled tomorrow morning at 6:00am, to get my port put in.

    I had a rough time trying to walk while leaving the hospital, since my legs and feet are already numb, the drug seemed to have interfered with what I've learned to compensate for to allow me to walk without feeling.

    I made it home with my daughters help and slept for several hours. I awoke with very dry throat and mouth, but no more shaking.

    That's the latest from the "How Not To Do This" poster child! LOL

    Hopefully, without any more unforeseen disasters I will check in tomorrow after surgery.

    Your friend

    Mike