Newbie - SCC stage 3 tonsil

 

I was diagnosed late in July after 7 months of trying to convince my family doctor and then an ENT that something was wrong with me. I even told both I thought I had cancer because I had an earache, swollen tonsil and half my tongue was numb and enlarged. I was told I had allergies then that I didn't, I was told to stay off the Internet and I was told the swollen tonsil was from having a virus and I would wake up one day and the swelling would be gone. After 2 more months I had my 6 month dental check and she saw a mass on my tonsil, same thing that had been there, so I went back to the ENT. He looked in my throat and said, "I made a mistake." He took a biopsy and called 3 days later to tell me he didn't get enough tissue and I needed to return. I was out of town for work so I drove 3 hours for a repeat biopsy and drove 3 hours back. Two days later he called with the diagnosis. Needless to say, I was not surprised but I was angry because now I'm stage 3. To top it off I got charged for both biopsies. 

I was started on Erbitux and 45 minutes into the loading dose I had an ananaphylactic reaction and had to be coded and brought back. A week later I started Cisplatin and radiation. I've had one round of Cisplatin and will have number 2 Tuesday. I've had 15 radiation treatments. I've been going daily for IV fluid due to dehydratIon, first from vomiting and then because of throat pain and inability to get hardly any water down. I've only lost 10 lbs. because I've been forcing down shakes since early this week. My radiation oncologist prescribed Stanford suspension which thankfully provides some pretty good relief. Two days ago my hair started falling out but I haven't read that that's common. The day after the Cisplatin treatment I went on short term disability from work. To top it off my boyfriend of 8 years told me he cares about me but doesn't want to be with me. Funny thing is, I'm okay with that because obviously he didn't love me. But I'm really struggling to stay positive as I sit here on a holiday weekend alone. When I was diagnosed I heard from so many people and now I only hear from my parents. Kinda having a pity party.

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Comments

  • JC F
    JC F Member Posts: 74
    You came to the right place...

    I don't post all that often but can certainly relate to several aspects of your post. I just finished 35 rads and three cisplatins on Aug. 20 and have been doing it alone the whole time. I'm divorced with two grown kids but they live far away and have full involved lives so I sit here alone just about every day. Visit the occasional friend but curiously no one drops by to visit. I guess you really seperate the "real" people in times of trouble, as you have experienced with your shallow coward of an ex-boyfriend, sorry you had to endure that at the worst of times, but as you see, he showed his true self. I read most every post here by everyone and see alot of kind compassionate people here with alot of good advice and caring about everyone in this "family"...it's not a pity party here...it's a place to vent...as I just have...keep fighting the good fight...

  • KTeacher
    KTeacher Member Posts: 1,103
    Welcome

    Welcome to the club no one wants to join!  There are many survivor's here that had tonsil cancer stage 3 and 4.  I didn't loose my hair with cisplatin, I don't know if the one time Erbutrix did it.  You might want to check out the Superthread (read only) many ideas for before, during and after treatment.  Sorry about the boyfriend but glad you have your parents on your side.

  • CoryDee
    CoryDee Member Posts: 21
    JC F said:

    You came to the right place...

    I don't post all that often but can certainly relate to several aspects of your post. I just finished 35 rads and three cisplatins on Aug. 20 and have been doing it alone the whole time. I'm divorced with two grown kids but they live far away and have full involved lives so I sit here alone just about every day. Visit the occasional friend but curiously no one drops by to visit. I guess you really seperate the "real" people in times of trouble, as you have experienced with your shallow coward of an ex-boyfriend, sorry you had to endure that at the worst of times, but as you see, he showed his true self. I read most every post here by everyone and see alot of kind compassionate people here with alot of good advice and caring about everyone in this "family"...it's not a pity party here...it's a place to vent...as I just have...keep fighting the good fight...

    Thank you so much for the

    Thank you so much for the encouragement. I'm happy to hear you made it through your treatment and it gives me hope. You are right about thr "real" people and I will be a better person because of this experience.

  • CoryDee
    CoryDee Member Posts: 21
    KTeacher said:

    Welcome

    Welcome to the club no one wants to join!  There are many survivor's here that had tonsil cancer stage 3 and 4.  I didn't loose my hair with cisplatin, I don't know if the one time Erbutrix did it.  You might want to check out the Superthread (read only) many ideas for before, during and after treatment.  Sorry about the boyfriend but glad you have your parents on your side.

    Thank you. Yes, my parents

    Thank you. Yes, my parents are getting up there in years but they are always there for me and for that I'm so thankful. I'll read the superthread for sure.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome, we have lots of love to share

     

    Corydee,

    Welcome to the H&N forum, I really  and truly believe you and shame on your doctor for not listening and chalk another one up for the dentist, she’s a keeper.

    One of my side effects of using Erbitux is it made hair grow, not fall out.

    If you cannot eat, then drink as much calorie laden liquid you can.  Try to drink  water and keep swallowing, I know it is hard, but try and do the best you can.

    Sorry about the boyfriend, but he has shown his true colors and he simply stinks.

    You are entering what can be a tough period of treatment side effects; ask questions we have all been there.

    Matt

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome CoryDee....

    You found the best group on the internet.  Lots of positive, caring, and very smart people here.....most have either been down the road you're taking, or are caretakers of those who were.  The good part is....we're all here to tell the tale Smile.

    You sound like you're doing pretty darn good for being nearly half way through radiation.  Are you getting the Cisplatin weekly, or are you on the three week schedule?  Take your anti-nausea meds regardless how you feel.....better to head it off than to try and stop it once it gets going.  Also.....hydration and nutrition are the foundations of getting through this treatment the best.....glad you're going in for daily hydration (I did that, also).....it helps....then drinking as much fluid as possible.  I not only drank a lot of water, but reintroduced myself to 4% milk after 30 years of not drinking it....it coats the mouth (like pretend spit).....hydrates and has calories and nutrition.....I was putting down a gallon every other day. 

    My hair thinned out, but nothing major......I did lose a 2 inch strip across the back at the nape of my neck....it was bald!!.....most people do, so very common...it's from the radiation.  It grew back in, tho.....

    Yes.....we all learned a valuble thing about friends it seems.  Tho I have to say that reaching out to some of my friends opened a door that they were afraid to open themselves......they didn't know what to say to me, or what to do for me.  Once I opened the door.....they were relived that it was the same old "p", just a little skinnier, and weaker......As for the chicken-sh** boyfriend....me thinks you did see his true colors.....and a big adios to him!

    Just know we answer all questions, nothing is off limits.....this is like a big family.....we'll tuck you under our collective wings and help you get through this.

    p

  • aemnoca
    aemnoca Member Posts: 17
    CoryDee

    Hi CoryDee

    Like everyone else I say keep your spirits up and have a good sense of humor (I made my RAD ONC an aluminum foil hat to protect her from the radiation). 

    While it is a rough road that is completely doable that is easy to say for all of us as we have through it, once you get started you will see that everyone is correct. For me it was not as bad as I had expected and the treatments went by faster and faster as the treatments went by.

    I just finished 35 RAD and 3 chemo (Cisplatin) treatments in early June and have been given 2 checkups of NED. I was dx with SCC, BOT stage IVA and was originally told that I had less than a 37% chance at 5 years, along with lossing 2/3 rds of my tongue. Then I had the PET Scan and the biopsy came back as SCC-HPV16+. Well that changed everything for me as now my survival went to around 95% for 5 years. What a relief that was. So until they have all the facts try not to let it get to you so badly. I lost 2 weeks to worry and wished that I had listened more to the group here as everyone of them have been correct.

    I have been a life long non-smoker and non-drinker.

    Oh yeah - so far I have been lucky enough to avoid surgery, I will find out more in a couple of weeks after my next PET Scan, if it comes back clean then I will be able to avoid the operation. 

    Keeping my fingers crossed and everyone in the group in my prayers,

    Mike

  • D Lewis
    D Lewis Member Posts: 1,581 Member
    Hi CoryDee

    I had a diagnosis very similar to yours, except base of tongue rather than tonsil.  Still, both are oropharyngeal cancers.  Cisplatin and radiation really suck, but as others have said, they are very doable, and your likelihood of a complete recovery is very high. As an oncology nurse once told me... this will consume six to nine months of your life, and then you will move on.  I am now approaching  4 1/2 years out from my treatment, and all is going well.

    Where are you located?  Have you found the link to the map which shows where we are all located?  Perhaps one of us is close enough to offer some face-to-face support and encouragement. Hang in there and have a pity party when you need to.

     

    Deb

  • Jeff2159
    Jeff2159 Member Posts: 108
    Erbitux

    I've been on it for over 6 months and I have lost most of eyebrows and eyelashes, my hair color went from black to dark brown (still have avoided grey). My hair has gone from somwhat wavy to straight with no body and the hair on my arms and legs feels very course but is stubby like a blow torch singed it. Very strange but the acne rash has been the worst on shoulders and arms

    good luck

    jeff

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N

    Welcome and sorry you need to be here. It's sad how some you thought were friends just disapear when you get this. Your true friends will be there for you through it all. I had less than five people who thought I would survive let a lone return to work, but I did.

    You came to the right place for support and understanding.

    Bill

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

    Sorry you are here, but it's a very good place to be for you right now... You might decide to stay here long after treatment too...

    I was Dx STGIII SCC Tonsils and a lymphnde, HPV+ in January 2009.

    Three rounds of Cisplatin, Taxotere and 5FU, then an addional seven weeks of concurrent Carboplatin and daily rads.

     

    Now at over five years post Tx, I'm alive and kicking with virtually no residual from treatment.

     

    You too can make it... Stay positive, come here often and vent or participate as much as needed...

     

    John

  • Guzzle
    Guzzle Member Posts: 710
    Skiffin16 said:

    Welcome...

    Sorry you are here, but it's a very good place to be for you right now... You might decide to stay here long after treatment too...

    I was Dx STGIII SCC Tonsils and a lymphnde, HPV+ in January 2009.

    Three rounds of Cisplatin, Taxotere and 5FU, then an addional seven weeks of concurrent Carboplatin and daily rads.

     

    Now at over five years post Tx, I'm alive and kicking with virtually no residual from treatment.

     

    You too can make it... Stay positive, come here often and vent or participate as much as needed...

     

    John

    sorry

    Cory Dee sorry for your situation but the people here really helped me. I finished treatment , chemotherapy and radiotherapy June 18. Just cycled 35 miles. The treatment is tough but you can get through it. Good luck, Gary

  • Shell_7801
    Shell_7801 Member Posts: 71
    Pity Party is OK

    I think it's ok to have a major pity party now and then.  As a matter of fact I believe it's an integral part of the process.  I remember my grandmother telling me in times of hysterics, "let it out honey, let it all out".  It's like a cleansing process that launches us back into the fight.  Spend a moment, or two, dwelling on all of the negative things.  Get mad, cry until your eyes swell shut and the snot is running out in gallons.....and then..... take a long breath and look forward.  My doctors didn't listen to me either and I was right when they were wrong.  I struggled to forgive that but quickly realized I had to, there were too many other things much more important that required that space in my head.  Good riddance to the "wrong man", how helpful could he have possibly been?  And "Holidays" are man made capitalistic events....don't get me started.

    You are not alone.  I care and I understand.

    "Let it out honey, let it all out"

     

    Shell

    SSC Stage 3a Tonsil

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    wow CoryDee, you've had to

    wow CoryDee, you've had to deal with a lot.  i'm so glad you are here but very sorry you need to be.  like you and many others here, i also found out who my "real" friends were and I had VERY FEW.  i think a  lot of people just cannot deal with serious sickness, at least that's what i tell myself.  i have to say I think Shell said it perfectly, "I think it's ok to have a major pity party now and then.  As a matter of fact I believe it's an integral part of the process.  I remember my grandmother telling me in times of hysterics, "let it out honey, let it all out".  It's like a cleansing process that launches us back into the fight.  Spend a moment, or two, dwelling on all of the negative things.  Get mad, cry until your eyes swell shut and the snot is running out in gallons.....and then..... take a long breath and look forward. "  its not a pitty party here, its surviving.  we are here for each other for the good and the bad days because we all understand.  you never have to worry about sharing a bad day, we've all had them and still do, even long after tx.  about the bf, he picked a terrible time to be a pri*** and leave but good ridens to bad rubbish.  he did NOT deserve you.  you will make it through this and we will be here to help you.  drink as much as you can and swallow everyday, even when it hurts, that is very important.  you are half way thru rads so you will be ringing the bell before you know it and we will be here to celebrate and do the happy dance with you.  there is light at the end of the tunnel and life after cancer.  stay stong and positive and know that we are always here.

    God bless you,

    dj

  • CoryDee
    CoryDee Member Posts: 21
    CivilMatt said:

    welcome, we have lots of love to share

     

    Corydee,

    Welcome to the H&N forum, I really  and truly believe you and shame on your doctor for not listening and chalk another one up for the dentist, she’s a keeper.

    One of my side effects of using Erbitux is it made hair grow, not fall out.

    If you cannot eat, then drink as much calorie laden liquid you can.  Try to drink  water and keep swallowing, I know it is hard, but try and do the best you can.

    Sorry about the boyfriend, but he has shown his true colors and he simply stinks.

    You are entering what can be a tough period of treatment side effects; ask questions we have all been there.

    Matt

     

    Thank you Matt

    I will take your advice on drinking calories. I just returned from the grocery store and that is as disturbing as watching Food Network! I now have five containers of ice cream in my freezer and whey protein powder to add to it. When this is over I don't think I'll ever eat ice cream again. Thanks for taking the time to offer some encouragement, it is greatly appreciated.

  • CoryDee
    CoryDee Member Posts: 21

    Welcome CoryDee....

    You found the best group on the internet.  Lots of positive, caring, and very smart people here.....most have either been down the road you're taking, or are caretakers of those who were.  The good part is....we're all here to tell the tale Smile.

    You sound like you're doing pretty darn good for being nearly half way through radiation.  Are you getting the Cisplatin weekly, or are you on the three week schedule?  Take your anti-nausea meds regardless how you feel.....better to head it off than to try and stop it once it gets going.  Also.....hydration and nutrition are the foundations of getting through this treatment the best.....glad you're going in for daily hydration (I did that, also).....it helps....then drinking as much fluid as possible.  I not only drank a lot of water, but reintroduced myself to 4% milk after 30 years of not drinking it....it coats the mouth (like pretend spit).....hydrates and has calories and nutrition.....I was putting down a gallon every other day. 

    My hair thinned out, but nothing major......I did lose a 2 inch strip across the back at the nape of my neck....it was bald!!.....most people do, so very common...it's from the radiation.  It grew back in, tho.....

    Yes.....we all learned a valuble thing about friends it seems.  Tho I have to say that reaching out to some of my friends opened a door that they were afraid to open themselves......they didn't know what to say to me, or what to do for me.  Once I opened the door.....they were relived that it was the same old "p", just a little skinnier, and weaker......As for the chicken-sh** boyfriend....me thinks you did see his true colors.....and a big adios to him!

    Just know we answer all questions, nothing is off limits.....this is like a big family.....we'll tuck you under our collective wings and help you get through this.

    p

    Thanks for the support

    I'm so happy to hear that you think I'm doing well at this stage because until I found this board I didn't really know. They tell you common and uncommon side effects but the doctors, no matter how good they are, can't always predict how each person will react. I am getting Cisplatin every third week. 

    Funny that you mention the bald strip because this morning after losing lots of hair in the shower I looked at the back of my head and I can see my bright red birthmark shining through. I just got my hair cut short last week and now I'll have a strip. How funny! Glad to know it will grow back.

    I truly appreciate your reply and encouragement. I'm glad to see survivors coming back to support those of us going through this struggle. It says a lot about your compassion and caring.

     

    Cory

     

  • CoryDee
    CoryDee Member Posts: 21
    aemnoca said:

    CoryDee

    Hi CoryDee

    Like everyone else I say keep your spirits up and have a good sense of humor (I made my RAD ONC an aluminum foil hat to protect her from the radiation). 

    While it is a rough road that is completely doable that is easy to say for all of us as we have through it, once you get started you will see that everyone is correct. For me it was not as bad as I had expected and the treatments went by faster and faster as the treatments went by.

    I just finished 35 RAD and 3 chemo (Cisplatin) treatments in early June and have been given 2 checkups of NED. I was dx with SCC, BOT stage IVA and was originally told that I had less than a 37% chance at 5 years, along with lossing 2/3 rds of my tongue. Then I had the PET Scan and the biopsy came back as SCC-HPV16+. Well that changed everything for me as now my survival went to around 95% for 5 years. What a relief that was. So until they have all the facts try not to let it get to you so badly. I lost 2 weeks to worry and wished that I had listened more to the group here as everyone of them have been correct.

    I have been a life long non-smoker and non-drinker.

    Oh yeah - so far I have been lucky enough to avoid surgery, I will find out more in a couple of weeks after my next PET Scan, if it comes back clean then I will be able to avoid the operation. 

    Keeping my fingers crossed and everyone in the group in my prayers,

    Mike

    Thank you Mike

    I'm happy to hear of your prognosis and I hope your PET scan comes back with good news and you can avoid surgery. Thank you for your words of encouragement.

    Cory

  • CoryDee
    CoryDee Member Posts: 21
    D Lewis said:

    Hi CoryDee

    I had a diagnosis very similar to yours, except base of tongue rather than tonsil.  Still, both are oropharyngeal cancers.  Cisplatin and radiation really suck, but as others have said, they are very doable, and your likelihood of a complete recovery is very high. As an oncology nurse once told me... this will consume six to nine months of your life, and then you will move on.  I am now approaching  4 1/2 years out from my treatment, and all is going well.

    Where are you located?  Have you found the link to the map which shows where we are all located?  Perhaps one of us is close enough to offer some face-to-face support and encouragement. Hang in there and have a pity party when you need to.

     

    Deb

    Congratulations Deb

    Wow, 4 1/2 years, that is very encouraging and I'm extremely happy for you! 

    No, I haven't seen a link to a map so maybe you can give me directions to it? I'm in Kansas.

    Thank you for your reply, it really helped lift my spirits.

    Cory

  • CoryDee
    CoryDee Member Posts: 21
    wmc said:

    Welcome to the H&N

    Welcome and sorry you need to be here. It's sad how some you thought were friends just disapear when you get this. Your true friends will be there for you through it all. I had less than five people who thought I would survive let a lone return to work, but I did.

    You came to the right place for support and understanding.

    Bill

    Thank you Bill

    Congratulations on making it through treatment and proving your doubters wrong!

  • CoryDee
    CoryDee Member Posts: 21
    Skiffin16 said:

    Welcome...

    Sorry you are here, but it's a very good place to be for you right now... You might decide to stay here long after treatment too...

    I was Dx STGIII SCC Tonsils and a lymphnde, HPV+ in January 2009.

    Three rounds of Cisplatin, Taxotere and 5FU, then an addional seven weeks of concurrent Carboplatin and daily rads.

     

    Now at over five years post Tx, I'm alive and kicking with virtually no residual from treatment.

     

    You too can make it... Stay positive, come here often and vent or participate as much as needed...

     

    John

    Thank you for replying

    I'm so encouraged by your story! What an amazing group of people here. It is wonderful to see people coming back so long after treatment to offer support and encouragement for people like me. I can't thank you enough.

    Cory