New to this, Husband just diagnosed with stage 3 left tonsil cancer

Hello,

New to this , electronically challenged, but will try.

My husband ron was diagnosed a few weeks ago with left tonsil stage 3 cancer. He had a left tonsilectomy and pathology put it as squamous cell carcinoma.

His ENT set him up with a day full of appts with oncologists and radiologists.

He was seen by his dentist and lucky to have healthy hard teeth.

He got his stents for his teeth and flouride trays.

Has to do 3 rounds of cisplatnum along with 7 weeks of radiation, IMRT.

He will have the mask fitting on wednesday and then appt to set up schedule for treatments.

I am his support and caregiver.

overwhelmed, stunned, appehensive and scared to hell.

I am assuming he will be off work for 4 months to 6 months.

He got a packet from the american cancer society today with statistices dated 2001 that survival rate was 55 or 56%. That sure was unnerving when the doctors say "its curable"

any advice is welcome.

«1

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi Janet, and welcome to the club nobody

    wants to join...You have found the most informative, supportive, and knowledgable group on the internet, tho....and you found it before treatment even has begun....GOOOOD!! Smile 

    Whoa...I guess the information you got from the AC is old....older than the hills.  Trust the Dr.'s and what they say....survival is WAY more than that....more like 80% to 85% these days.

    Everyone is stunned, apprehensive, and scared as hell when they first hear the news....for many of us, this is the first time in our lives were faced with an obstacle that we ourselves cannot get around without help.  If you go to the main page of this forum....where all posts are listed, you will find the Superthread at the top (it is always there)...and well worth reading.  It is packed full of information on the pitfalls of certain parts of treatment, what to look for, etc.  There are some basic side effects of treatment that pretty much everyone gets....but the degrees of how bad varies from person to person. 

    There are many other caretakers on this board and they will tuck you under their wings, so you never feel alone.....us patients won't leave you, either....but the caretakers understand the emotional turmoil you're going through better. 

    I will tell you tho, that your husband will come through this just like the rest of us have...it's not a cake walk, but it's doable, and he will do it. 

    Feed him good for as long as he can....have him OD on all his favorite foods....the more fattening the better. 

    Stick close to this board, I'm sincere when I tell you that you will never be alone in this.

    p

  • janetluvsron
    janetluvsron Member Posts: 116

    Hi Janet, and welcome to the club nobody

    wants to join...You have found the most informative, supportive, and knowledgable group on the internet, tho....and you found it before treatment even has begun....GOOOOD!! Smile 

    Whoa...I guess the information you got from the AC is old....older than the hills.  Trust the Dr.'s and what they say....survival is WAY more than that....more like 80% to 85% these days.

    Everyone is stunned, apprehensive, and scared as hell when they first hear the news....for many of us, this is the first time in our lives were faced with an obstacle that we ourselves cannot get around without help.  If you go to the main page of this forum....where all posts are listed, you will find the Superthread at the top (it is always there)...and well worth reading.  It is packed full of information on the pitfalls of certain parts of treatment, what to look for, etc.  There are some basic side effects of treatment that pretty much everyone gets....but the degrees of how bad varies from person to person. 

    There are many other caretakers on this board and they will tuck you under their wings, so you never feel alone.....us patients won't leave you, either....but the caretakers understand the emotional turmoil you're going through better. 

    I will tell you tho, that your husband will come through this just like the rest of us have...it's not a cake walk, but it's doable, and he will do it. 

    Feed him good for as long as he can....have him OD on all his favorite foods....the more fattening the better. 

    Stick close to this board, I'm sincere when I tell you that you will never be alone in this.

    p

    thankyou both and matt for

    thankyou both and matt for answering.

    I am a nurse at his primary care doctors office and have been at the begining of the diagnosis for patients but I am the one who finds their next route of doctors and get those doctors preapproved by insurance and then I hardly ever see them. and I have never heard in my 16 years of nursing , of tonsil cancer.

    Great to hear about the percentage being so high. cant beleive they have not changed on the AC since 2001.

     

    I will be crawling these pages daily for info and I have saved you to my favorites to keep up on any info you advise.

    Such a rainy memorial day here, fits our moods today.

    I hope every one is good.

    Thankyou so much for responding

     

     

     

     

  • NoDuck
    NoDuck Member Posts: 134
    Hang In There

    My hubby had the exact diagnosis and nearly the same treatment. He did not have surgery because of the way the cancer hadmetastasized to 4 lymph nodes and was wedged too close to his jugular and carotid. 

    May 30will be one year since he started treatment.  He finished July 19 2012.  He is not with me this weekend -- he is huntimg black bear and wild hogs in the panhandle of Florida!! And we live in Oklahoma so just the road trip was quit an endeavor.

    yes, there were lots of prayers that he would survive the treatment. It absolutely brought him to his knees.  If there was a side effect that was even remotely possible, he got it.  And he got c diff (like staph of the gastrointestinal system) that hospitalized him for a week. 

    Expect tough but survivable times. I was exactly where you are one year ago and this weekend I am alone and in charge of the remote control because he survived. Your hubby will to.

    Come here often.  Read old threads.  Several folks on here with the exact same diagnosis -- Even down to being the LEFT tonsil.  Seems lots more left than right (okay Skiffin, I left that one wide open for a snappy comeback GRIN)

    Deb

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    Can't add to much more

    Janet,

    I can't add much more to what Phrannie and Matt have mentioned already. Yes, the data that you read is a bit outdated, when I was going thru Base of Tongue cancer in 2004, I was told by those here then that the data seemed to run about 10 years behind. That is for the Stats, not the treatments.

    One person that is here "fishmanpa" also known as "T" recently completed his treatments for Tonsil cancer, I think he may be 3 weeks out from treatments now, so he will be a great source of information for both of you as Marcia was his caregiver as well. You and Ron are just starting and "T" is just finishing, can't get more up to date info then that.

    As Matt stated, any questions, get them off you mind and answered here pretty darn quickly.

    My Best to Both of You and Everyone Here

  • osmotar
    osmotar Member Posts: 1,006
    Welcome

    I was diagnosed in July 2011 with stage 4a scc of the right tonsil, went to 1 lymph node on the rt side of my neck..had only the rt tonsil removed..in aug I started what my oncologist said was going to be the mother of all treatments..evey 21 days I had cisplatin, toxotore, and a 5fu pump...then in Nov I started 7 1/2 weeks of rads with 1 day infusion of cisplatin..while I was fortunate not to experience a lot if any of the nasty side effects of chemo & rads, it's tough but doable. My advice 17 momths later is be proactive, ask questions , if the mask doesn't feel right tell the techs, they are there to help you...eat when and what you can to keep up your strength, get out of the house when you feel like it , tell the docs about any symptoms whether you think their minor or not, take meds as your prescribed but never let pain get ahead of you , importantly stay hydrated . we are all different in our treatments and reactions to the meds, but the one thing in common is we are all banded together in this fight. You will find a wealth of knowledge on this site.

     

    Blessings & Light

     

    Linda

  • robswife87
    robswife87 Member Posts: 209
    We are in the same boat

    Rob was diagnosed Stage 4a SCC HPV+ Left tonsil 4 lymph nodes T2-3N2bM0 in March. No surgery. Lost 2 teeth

    He has 4 rads and 1 chemo left. 

    Has just about every symptom listed and is haveing a rough time. Has only eaten by PEG for the last week. Still trying to swallow water. The thick mucous is what is really killing him right now. 

    Keep him hydrated. Rob has gotten dehydrated several times. He now has hydration 3 days a week. He is on 35 Rads and 7 weekly Taxol and Carbo. He vomited for the first time yesterday. He is having a lot of acid reflux. On his second bout of thrush. Very painful for him.

    Your husband and mine will be survivors although while going through this horrible treatment they may not feel like they are going to make it.

    Be prepared to take some crap from your patient. Try to remember that it is not you that it is the treatment that is making him be a little gruff with you and everyone else. They are in pain. Rob has never been snippy with me much but this is a whole new territory and I try not to take it personally. He does thank me every night and apologizes for putting me through this. He has never been a great sick person. Even the kids are hanging tough and luckily old enough to understand that this is not there dad right now.

    Being the carefiver is rough, you are doing everything and you are emotionally and physically being taxed. Rest when you can. 

    You both will make it. Keep looking for the light at the end of this tunnel it is there.

    Sandy

  • janetluvsron
    janetluvsron Member Posts: 116
    osmotar said:

    Welcome

    I was diagnosed in July 2011 with stage 4a scc of the right tonsil, went to 1 lymph node on the rt side of my neck..had only the rt tonsil removed..in aug I started what my oncologist said was going to be the mother of all treatments..evey 21 days I had cisplatin, toxotore, and a 5fu pump...then in Nov I started 7 1/2 weeks of rads with 1 day infusion of cisplatin..while I was fortunate not to experience a lot if any of the nasty side effects of chemo & rads, it's tough but doable. My advice 17 momths later is be proactive, ask questions , if the mask doesn't feel right tell the techs, they are there to help you...eat when and what you can to keep up your strength, get out of the house when you feel like it , tell the docs about any symptoms whether you think their minor or not, take meds as your prescribed but never let pain get ahead of you , importantly stay hydrated . we are all different in our treatments and reactions to the meds, but the one thing in common is we are all banded together in this fight. You will find a wealth of knowledge on this site.

     

    Blessings & Light

     

    Linda

    how long were you out of

    how long were you out of work?

    and how much pain meds did you have to take?

    ron will be doing the chemo and radiation at the same time together.

  • janetluvsron
    janetluvsron Member Posts: 116

    We are in the same boat

    Rob was diagnosed Stage 4a SCC HPV+ Left tonsil 4 lymph nodes T2-3N2bM0 in March. No surgery. Lost 2 teeth

    He has 4 rads and 1 chemo left. 

    Has just about every symptom listed and is haveing a rough time. Has only eaten by PEG for the last week. Still trying to swallow water. The thick mucous is what is really killing him right now. 

    Keep him hydrated. Rob has gotten dehydrated several times. He now has hydration 3 days a week. He is on 35 Rads and 7 weekly Taxol and Carbo. He vomited for the first time yesterday. He is having a lot of acid reflux. On his second bout of thrush. Very painful for him.

    Your husband and mine will be survivors although while going through this horrible treatment they may not feel like they are going to make it.

    Be prepared to take some crap from your patient. Try to remember that it is not you that it is the treatment that is making him be a little gruff with you and everyone else. They are in pain. Rob has never been snippy with me much but this is a whole new territory and I try not to take it personally. He does thank me every night and apologizes for putting me through this. He has never been a great sick person. Even the kids are hanging tough and luckily old enough to understand that this is not there dad right now.

    Being the carefiver is rough, you are doing everything and you are emotionally and physically being taxed. Rest when you can. 

    You both will make it. Keep looking for the light at the end of this tunnel it is there.

    Sandy

    Thankyou robswife,
    ron has

    Thankyou robswife,

    ron has never been sick except one time with pneumonia in the 32 years I have known him.

    this should be an experience.

    I fully expect him to dehydrate, but the dr's dont want to start with the peg tube. I dimed him out to the oncologist at our appt last week and he threatened ron to be put n the hospital a couple days a week for IV if he needed.

    ron didnt drink enough during the horrible 2 weeks of recovery from the tonsilectomy.

    the pet scan showed uptake in one node but they are not sure since it was so close to the surgical area and he is still healing.

    But he is back to eating good for now, teeth are great thank god, and he is still working but plans on going out as soon as chemo starts.

    He is a workaholic and it should be interesting to see him reinquish control.

    I am very grateful for the postings and comments , please keep them coming.

    thankyou

    janet

  • janetluvsron
    janetluvsron Member Posts: 116
    osmotar said:

    Welcome

    I was diagnosed in July 2011 with stage 4a scc of the right tonsil, went to 1 lymph node on the rt side of my neck..had only the rt tonsil removed..in aug I started what my oncologist said was going to be the mother of all treatments..evey 21 days I had cisplatin, toxotore, and a 5fu pump...then in Nov I started 7 1/2 weeks of rads with 1 day infusion of cisplatin..while I was fortunate not to experience a lot if any of the nasty side effects of chemo & rads, it's tough but doable. My advice 17 momths later is be proactive, ask questions , if the mask doesn't feel right tell the techs, they are there to help you...eat when and what you can to keep up your strength, get out of the house when you feel like it , tell the docs about any symptoms whether you think their minor or not, take meds as your prescribed but never let pain get ahead of you , importantly stay hydrated . we are all different in our treatments and reactions to the meds, but the one thing in common is we are all banded together in this fight. You will find a wealth of knowledge on this site.

     

    Blessings & Light

     

    Linda

    linda
    ron will be starting on

    linda

    ron will be starting on cisplatin, what is 5fu pump? I have seen that listed several places but never heard of it.

    thankyou

    janet

  • robswife87
    robswife87 Member Posts: 209

    Thankyou robswife,
    ron has

    Thankyou robswife,

    ron has never been sick except one time with pneumonia in the 32 years I have known him.

    this should be an experience.

    I fully expect him to dehydrate, but the dr's dont want to start with the peg tube. I dimed him out to the oncologist at our appt last week and he threatened ron to be put n the hospital a couple days a week for IV if he needed.

    ron didnt drink enough during the horrible 2 weeks of recovery from the tonsilectomy.

    the pet scan showed uptake in one node but they are not sure since it was so close to the surgical area and he is still healing.

    But he is back to eating good for now, teeth are great thank god, and he is still working but plans on going out as soon as chemo starts.

    He is a workaholic and it should be interesting to see him reinquish control.

    I am very grateful for the postings and comments , please keep them coming.

    thankyou

    janet

    We didn't start with PEG

    either, He got it about 2 weeks ago. He lost to much weight, mostly because of the dehydraton. 

    He has been straight PEG for feeding but tries to continuse to swallow water to keep those muscles working. He is fighting bad thick musous which I know is causing his low grade nausea. Going for L-glutamine today, hoping it helps. Trying to get him to take his compazine has been a huge fight.  

    Rob has always been a huge workaholic and this has been very hard for him. Staying home is not his thing but just walking out to the deck is very tiring for him. He has never really been a sick person. The flu about once every tens years and he continued to work. 

    Continue the good fight, you both will survive and life will be good once again. At least that is the thought that gets me through this.

    Sandy

  • phrannie51
    phrannie51 Member Posts: 4,716

    Thankyou robswife,
    ron has

    Thankyou robswife,

    ron has never been sick except one time with pneumonia in the 32 years I have known him.

    this should be an experience.

    I fully expect him to dehydrate, but the dr's dont want to start with the peg tube. I dimed him out to the oncologist at our appt last week and he threatened ron to be put n the hospital a couple days a week for IV if he needed.

    ron didnt drink enough during the horrible 2 weeks of recovery from the tonsilectomy.

    the pet scan showed uptake in one node but they are not sure since it was so close to the surgical area and he is still healing.

    But he is back to eating good for now, teeth are great thank god, and he is still working but plans on going out as soon as chemo starts.

    He is a workaholic and it should be interesting to see him reinquish control.

    I am very grateful for the postings and comments , please keep them coming.

    thankyou

    janet

    I was gone from work for

    6 months.....however it would have only been 5 months except we had a little problem when they placed the port.....my lung got punctured (one chance in a thousands.....) so I ended up recovering from that and going directly into treatment from there.....I too had 35 daily rads and 3 Cisplatins, 21 days apart.  Then 3 more Cisplatins with a 5FU pump after chemo was over.  It's a little pump you wear, that pumps the chemo 5FU into a person for 4 days, continuously.

    Be aware that tho your Dr. may not want to give Ron a PEG tube now, he still may end up with one.....I got mine before treatment and was grateful even tho I never used it until after radiation was over.....and by that time it was my only way to get needed nourishment and hydration.  My experience here on this forum is it's the rare duck who gets through this without a feeding tube. 

    Glad to hear you put this forum in your faves.....as treatment progresses you will have questions, and you'll get answers here that you can take to his Dr.'s and say...."what about this?"...."Can we try that".....My Dr. was always open to things, and many of the great suggestions I got here he'd never heard of or thought about.  It's kind of like making all the good Dr.'s who have treated the patients with HCN put their heads together as a group........by proxy....you are the proxy agent.....LOL.

    p

  • janetluvsron
    janetluvsron Member Posts: 116

    I was gone from work for

    6 months.....however it would have only been 5 months except we had a little problem when they placed the port.....my lung got punctured (one chance in a thousands.....) so I ended up recovering from that and going directly into treatment from there.....I too had 35 daily rads and 3 Cisplatins, 21 days apart.  Then 3 more Cisplatins with a 5FU pump after chemo was over.  It's a little pump you wear, that pumps the chemo 5FU into a person for 4 days, continuously.

    Be aware that tho your Dr. may not want to give Ron a PEG tube now, he still may end up with one.....I got mine before treatment and was grateful even tho I never used it until after radiation was over.....and by that time it was my only way to get needed nourishment and hydration.  My experience here on this forum is it's the rare duck who gets through this without a feeding tube. 

    Glad to hear you put this forum in your faves.....as treatment progresses you will have questions, and you'll get answers here that you can take to his Dr.'s and say...."what about this?"...."Can we try that".....My Dr. was always open to things, and many of the great suggestions I got here he'd never heard of or thought about.  It's kind of like making all the good Dr.'s who have treated the patients with HCN put their heads together as a group........by proxy....you are the proxy agent.....LOL.

    p

    thankyou so much "P"
    I was

    thankyou so much "P"

    I was wondering about that 5fu.

    I will be on here a lot and scanning for all of you all's postings and advice to ppl.

    It helps with my anxiety.

    seeing these boards comfort me greatly.

    THANKYOU, ALL OF YOU

    janet

  • osmotar
    osmotar Member Posts: 1,006

    linda
    ron will be starting on

    linda

    ron will be starting on cisplatin, what is 5fu pump? I have seen that listed several places but never heard of it.

    thankyou

    janet

    Pump

    5fu is another chemo drug , it was the last one  i received during all day treatment , it's in enclosed in a device like fanny  pack but with a stap..I wore it from Monday to mid/late Friday afternoons. The following monday i would get a neulasta injection to maintain white blood cell counts . I had and still have a power port ( under the skin) in my chest  it's where I received all the cocktail infusions , plus it allows for all blood draws..the pump to me was more of an annoyance than anything else..dressing, sleeping , driving a car. During all treatments , chemo and rads , and for 7 months after I was fortunate that my company allowed me to work from home. As for the port I'm hoping to have it removed in July after I see my onco in late June. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    Hello to you

     

    Hi Janet,

    Welcome to the H&N forum, so sorry you answered yes in the cancer column.

    I was scared too, but tuned in here and got some good advice prior to treatments.  Follow Phrannie’s advice and check-out the Superthread, it may scare you some more, so read it with one eye closed.  You both will be ok, just remember the objective is to get through these next few months and then you can start healing and adjusting to your “new normal”.

    As soon as you are ready, ask any question you like and someone will chime in to help you out.

    You will be ok,

    Matt

     

  • janetluvsron
    janetluvsron Member Posts: 116
    CivilMatt said:

    Hello to you

     

    Hi Janet,

    Welcome to the H&N forum, so sorry you answered yes in the cancer column.

    I was scared too, but tuned in here and got some good advice prior to treatments.  Follow Phrannie’s advice and check-out the Superthread, it may scare you some more, so read it with one eye closed.  You both will be ok, just remember the objective is to get through these next few months and then you can start healing and adjusting to your “new normal”.

    As soon as you are ready, ask any question you like and someone will chime in to help you out.

    You will be ok,

    Matt

     

    thankyou matt, we will be

    thankyou matt, we will be asking a lot of questions in the next few days.

  • GBC52
    GBC52 Member Posts: 2
    Tons of Questions

    My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

    We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

    We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

    He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

    I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

    I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

  • janetluvsron
    janetluvsron Member Posts: 116
    GBC52 said:

    Tons of Questions

    My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

    We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

    We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

    He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

    I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

    I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

    gbc52I am also new with my

    gbc52

    I am also new with my husbands diagnosis, they are very helpful , especially "T" and for the life of me I cant remember her name off the top of my head but I think its phranni

    she has posted on this thread and so has he and they have both been wonderful and supportive.

    cistplatin is a type of platinum chemo. but my husband takes a big does of it on day 1 of radiation start and days 21 and final  another does , I think its supposed to be every 21 days during radiation and he will get 7 weeks of that.

    He had a tonsilectomy and that is how we found the cancer. no other surgery. we are doing all the radiation asap to try to avoid all the neck disections and taking out soft palate and parts of the tongue since they do believe that the tonsil was the primary site but they did not have clear borders.

    Out radiologist does not start with feeding tube and neither does the oncologist,they feel since my husband is 40 pounds overwieght he would be fine. I dont know, that tonsilectomy was harsh and could barely get him to drink. I told the oncologist that and he has threatened that if my husband doesnt drink enough he will hopitalize his but in a heartbeat.

    I used to work for a family practice dr that also was had holistic training. I dont think the juices can be used very well since they mostly contain natural sugars. but keep researching vegetables and a good juicing machine. I am in the process of that to find extra supplements. Our radiologists does not want any supplements in the form of vitamins or herbs to help due to not sure how they would react or interfere.

    and we were told that if the cistplatin does not tolerate well then they would use alternate chemo weekly, I am wondering if that is why some ppl have other chemos?

    Please keep me updated on your husbands progress and may god be with you and keep him strong and you too.

    janet

  • HelenBack
    HelenBack Member Posts: 87 Member
    GBC52 said:

    Tons of Questions

    My husband was diganoised stage 4 w/ tonsil cancer. His treatment is to be 3 Cisplatin treatments and 33 rad.  He has had 1 chemo treatment and 13 rad so far. As I am reading on here, I get very concerned because a lot of you have had surgery and have had different kinds of chemo along w/ more rad treatments and the Cisplatin..  I concerned his treatment plan is not enough. His medical oncologist showed us a print out that this is the ACC society recommendation but I am not sure when they updated their information.  

    We got a third opinion and all agreed not to do surgery because chemo/rad has the same outcome.  We are hoping rad will burn his tonsils up.  It was also suggested that we get the feeding tube and like some others on here my husband has been in the less than 10% category.  He had to have a 4" incision in his abdomen to input the feeding tube because his stomach was to high. He also had hiccups w/ chemo and we had no idea that could be a side effect. But he was not nauseated at all.  He received fluids for 5 days after chemo which I think helped him a lot. 

    We thought it would be much later down the treatment path before he would need to use the tube.  But He started using ensure in the tube this week. 

    He has lost a lot of weight and we would love to stabilize his weight, but I Am not sure it is going to happen. Doc is telling him to eat anything that he can get down, But I worry about the sugar content, because we all know sugar feeds cancer.  

    I want to juice for him but we have not had any support for this from any of the medical staff that we are working with.  There is not a Naturpath doctor in our area either.  I wish the medical field and the integrative field could work together, because I think our health would be better if they did.

    I also want to say that I already love this site.  I have been reading on here many sleepless nights and you all are so kind and helpful.

    Hello GBC52

    Welcome to the group no one want sto join, but are glad they did. You, I'm sure have read so much on here and will gets tons of good advice.

    My husband had the exact same treatment as yours will have. It is absolutely the standard up-to-date protocol. Whether a person hads surgery or not depends on a few things. Generally, surgery is done these days to get a solid pathological staging. It can help the doctors to be very specific with their radiation location and can detremine if you need chemo or not. For example, my husband's doctor thought that his cancer was at an earlier stage than it turned out to be. He wanted to do surgery to find out exactly how many nodes were involved and whether they showed extracapsular spread. The hope was to mabe dial down the amount of radiation and avoid chemo altogether.

    But, it turned out that a few involved nodes didn't show up on the PET scan and one had extracapsular spread and so he would have the full rads and chemo anyway. Having the surgery and waiting to heal postponed the start of treatment. Fortunately, my husband had a very easy time with healing from the surgery so it was no biggie. Sometimes, after treatment doctors do a neck dissection anyway to make sure the nodes are cancer-free. I'm not sure that that is still done as I haven't heard of many here doing that recently.

    But, if we had to do it over we probably would have skipped the surgery and would be a couple of months out from treatment by now (insted of a couple of days).

    Also, I'm pretty sure the idea that cancer feeds sugar has been debunked. Of course, sugar isn't good for you and its best to get your nutrients from haelthy sources if at all possible, but I think most here have been pretty comfortable with getting calories any way they can. Its' only for a couple of months after all.

    We never went for that ensure stuff but instead made healthy protein rich high calorie smoothies. I used a lot of organic whole milk and yogurt. I made smoothies with banana (ripe is best) paenut or almond butter with flax meal and whole milk. I used apple or orange juice with whole milk greekyogurt, banana, protein powder, frozen blueberries and kale (you have to have a good blender to do the kale and wash it really well). I would add oil (flax or olive) to things to get the calories up. It all worked great until recently. Now my husband is just soo smoothied out.

    Also, where sugar is concerned, I think thrush is more of a concern than feeding cancer. My husband takes a high-quality acidopholis spplement and hasn't had thrush. Don't know if that's the reason but we're so glad he didn't get it.

    Good Luck, you'll get through this.

    Helen

  • janetluvsron
    janetluvsron Member Posts: 116
    HelenBack said:

    Hello GBC52

    Welcome to the group no one want sto join, but are glad they did. You, I'm sure have read so much on here and will gets tons of good advice.

    My husband had the exact same treatment as yours will have. It is absolutely the standard up-to-date protocol. Whether a person hads surgery or not depends on a few things. Generally, surgery is done these days to get a solid pathological staging. It can help the doctors to be very specific with their radiation location and can detremine if you need chemo or not. For example, my husband's doctor thought that his cancer was at an earlier stage than it turned out to be. He wanted to do surgery to find out exactly how many nodes were involved and whether they showed extracapsular spread. The hope was to mabe dial down the amount of radiation and avoid chemo altogether.

    But, it turned out that a few involved nodes didn't show up on the PET scan and one had extracapsular spread and so he would have the full rads and chemo anyway. Having the surgery and waiting to heal postponed the start of treatment. Fortunately, my husband had a very easy time with healing from the surgery so it was no biggie. Sometimes, after treatment doctors do a neck dissection anyway to make sure the nodes are cancer-free. I'm not sure that that is still done as I haven't heard of many here doing that recently.

    But, if we had to do it over we probably would have skipped the surgery and would be a couple of months out from treatment by now (insted of a couple of days).

    Also, I'm pretty sure the idea that cancer feeds sugar has been debunked. Of course, sugar isn't good for you and its best to get your nutrients from haelthy sources if at all possible, but I think most here have been pretty comfortable with getting calories any way they can. Its' only for a couple of months after all.

    We never went for that ensure stuff but instead made healthy protein rich high calorie smoothies. I used a lot of organic whole milk and yogurt. I made smoothies with banana (ripe is best) paenut or almond butter with flax meal and whole milk. I used apple or orange juice with whole milk greekyogurt, banana, protein powder, frozen blueberries and kale (you have to have a good blender to do the kale and wash it really well). I would add oil (flax or olive) to things to get the calories up. It all worked great until recently. Now my husband is just soo smoothied out.

    Also, where sugar is concerned, I think thrush is more of a concern than feeding cancer. My husband takes a high-quality acidopholis spplement and hasn't had thrush. Don't know if that's the reason but we're so glad he didn't get it.

    Good Luck, you'll get through this.

    Helen

    Helen,
    would love some

    Helen,

    would love some smoothie receipes and the name of the acidophplis.my husband isnt a yogurt or kale person but he likes most everything else.

    How is your husband doing so far?

    god bless

    janet

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome Janet

    I too was Dx with STGIII SCC Tonsil Cancer (right) and a lymphnode, HPV+... January 2009.

    Tonsils came out first, port inserted next, I had no PEG.

    Similar to a few, I had nine weeks of Cisplatin, Taxotere and 5FU... in three week cycles. That followed with seven weeks of concurrent weekly Carboplatin, and 35 daily rads sessions..., like Phrannie, daily Amifostine injections in my stomach.

    The statistics you were given are pretty old... current survival rates and cure rates are much better...

    Treatment is still very rough, but doable with the right attitude, plenty of hydration and calories, and knowledge...

    You have found a great place as for knowledge and experience here...BTW all scans have been clean and clear going on four years in three weeks...

    Best,

    John