New here and wanted to say hello

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Hard12Find
Hard12Find Member Posts: 218 Member
I was diagnosed last week with scc, and came across this site and found it to be informational and supportive. It is great to see the multiple year survivors, and that gives me hope. I am having to wait until next Tuesday to talk to my oncologist. I am very concerned with staging, and trying to locate the spread. Seeing stage IV survivors is very encouraging. Thank you for sharing your experiences as I feel knowing what to expect eases my worries, even though treatment sounds pretty horrific, I know I can do it for a couple months or so.
I am scheduled for a feeding tube placement next Wednesday and that seems premature considering there has been no imaging done, but I am trying to trust the professionals. I am sure I will need it and appreciate it in time.
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  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Welcome
    Glad you found us, but sorry you have reason to look us up. You didn't mention the location of your cancer. Mine was confined to (or near) the larynx. From my reading, I think that patients with tumors in the mouth find it harder to eat than those of us whose tumors are confined to the throat. I should be ashamed by such generalizations. Nevertheless, you should be able to find someone with a similar location, and get more specific advice on how to handle the day to day challenges. Be assured, you healthcare team and your loved ones will pull you thru. Rick.
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    welcome
    Hard12Find,

    I am sorry about your diagnosis (scc), that is a very popular cancer for this site, it is kind of an unlucky fortunate for you. Matter-of-fact I am one of your buddies here (trying to be funny). Don’t want to scare you, just want you to know it will work out fine. If you have any questions, just ask and we will try to help. If you stay connected there shouldn’t be any surprise for you on this trip.

    To read my bio just click on the name CIVILMATT.

    Best,

    Matt
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    CivilMatt said:

    welcome
    Hard12Find,

    I am sorry about your diagnosis (scc), that is a very popular cancer for this site, it is kind of an unlucky fortunate for you. Matter-of-fact I am one of your buddies here (trying to be funny). Don’t want to scare you, just want you to know it will work out fine. If you have any questions, just ask and we will try to help. If you stay connected there shouldn’t be any surprise for you on this trip.

    To read my bio just click on the name CIVILMATT.

    Best,

    Matt

    Welcome Hard12find...
    Sorry you had to join our club ...but a great find indeed.

    I was stage III with base of tongue primary tumor and one lymph node involved.

    I had only Erbitux (form of chemo) and radiation. I had NO surgery and NO platinum chemo treatments.

    Read the SUPERTHREAD John (skiffin) referred to ..it's a HUGE resource with lots of answers.

    I am 7 months out of treatment and have been given the NED (NO EVIDENCE OF DISEASE) and I am doing quite well (still some side affects, but nothing to complain about).

    I'm glad you have decided to take the feeding tube. You may not need it, but if you do, better to have it "installed now" than in the middle of treatments. I lost 70lbs during treatments. Yes, that's not a typo, 70lbs.

    Protein is going to be your best friend during treatments. It promotes healing (I am not a doctor) and calories. Eat all you can now, gain weight if you can (my opinion).

    Keep us posted!

    Whispered a prayer all will go well for you and you will find some comfort soon. It's all so new and so much swirling in your head...I promise soon you will find a better place mentally because you will have a plan of treatment and you will be fighting back and you will win....not long from now you will be looking back and saying "what cancer"? :)

    Best,

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome...
    This is an awesome site with tons of knowledge and support.....

    I was STGIII Tonsils and a lymphnode....clean and clear since Jun2009.... I went through the chemo and rads... It's all on my BIO, won't go into it now, LOL.

    Anyways, sorry you are here, but it's a good place to be if you have to.

    We have a SuperThread that can answer or direct you to some good info as well.

    SuperThread

    Best,
    John
  • VivianLee5689
    VivianLee5689 Member Posts: 546
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    Tim6003 said:

    Welcome Hard12find...
    Sorry you had to join our club ...but a great find indeed.

    I was stage III with base of tongue primary tumor and one lymph node involved.

    I had only Erbitux (form of chemo) and radiation. I had NO surgery and NO platinum chemo treatments.

    Read the SUPERTHREAD John (skiffin) referred to ..it's a HUGE resource with lots of answers.

    I am 7 months out of treatment and have been given the NED (NO EVIDENCE OF DISEASE) and I am doing quite well (still some side affects, but nothing to complain about).

    I'm glad you have decided to take the feeding tube. You may not need it, but if you do, better to have it "installed now" than in the middle of treatments. I lost 70lbs during treatments. Yes, that's not a typo, 70lbs.

    Protein is going to be your best friend during treatments. It promotes healing (I am not a doctor) and calories. Eat all you can now, gain weight if you can (my opinion).

    Keep us posted!

    Whispered a prayer all will go well for you and you will find some comfort soon. It's all so new and so much swirling in your head...I promise soon you will find a better place mentally because you will have a plan of treatment and you will be fighting back and you will win....not long from now you will be looking back and saying "what cancer"? :)

    Best,

    Tim

    Welcome
    I am fairly new to this site as well. My husband goes in for surgery on Thursday to remove cancer on the base of the tongue on the right side and have a feeding tube placed as well. He is staged at Stage IV, but the doctors say staging in the head and neck can have quite different outcomes than some other cancers. We still aren't sure if he will have a neck dissection, but he definitely has chemo and radiation to go through. I will keep you in my prayers.
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    Skiffin16 said:

    Welcome...
    This is an awesome site with tons of knowledge and support.....

    I was STGIII Tonsils and a lymphnode....clean and clear since Jun2009.... I went through the chemo and rads... It's all on my BIO, won't go into it now, LOL.

    Anyways, sorry you are here, but it's a good place to be if you have to.

    We have a SuperThread that can answer or direct you to some good info as well.

    SuperThread

    Best,
    John

    welcome
    Thanks John. I know I have 1 tonsil and probably base of tongue. Hope they get me imaged and classed soon.
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    Welcome
    Glad you found us, but sorry you have reason to look us up. You didn't mention the location of your cancer. Mine was confined to (or near) the larynx. From my reading, I think that patients with tumors in the mouth find it harder to eat than those of us whose tumors are confined to the throat. I should be ashamed by such generalizations. Nevertheless, you should be able to find someone with a similar location, and get more specific advice on how to handle the day to day challenges. Be assured, you healthcare team and your loved ones will pull you thru. Rick.

    thank you
    I would like to thank everyone for the encouragement. I would reply to each individually but am on my phone and get frustrated typing. Here
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    thank you
    I would like to thank everyone for the encouragement. I would reply to each individually but am on my phone and get frustrated typing. Here

    Phone Text...
    LOL, I have to double and triple check my phone text...

    LOL, some of the things my phone thinks I meant to say would and has gotten me into trouble.

    I'm at a point now that I can text anything, they just think it's my phone texting again.

    JG
  • nick770
    nick770 Member Posts: 195
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    Welcome
    I am fairly new to this site as well. My husband goes in for surgery on Thursday to remove cancer on the base of the tongue on the right side and have a feeding tube placed as well. He is staged at Stage IV, but the doctors say staging in the head and neck can have quite different outcomes than some other cancers. We still aren't sure if he will have a neck dissection, but he definitely has chemo and radiation to go through. I will keep you in my prayers.

    Hello and welcome from Ohio
    Hello and welcome from Ohio You have come to the right place there are so many great people on here that will help you get thru keep in touch , hang in there and keep the positive attitude
  • Isign4Him
    Isign4Him Member Posts: 36
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    Welcome
    Glad you found us, but sorry you have reason to look us up. You didn't mention the location of your cancer. Mine was confined to (or near) the larynx. From my reading, I think that patients with tumors in the mouth find it harder to eat than those of us whose tumors are confined to the throat. I should be ashamed by such generalizations. Nevertheless, you should be able to find someone with a similar location, and get more specific advice on how to handle the day to day challenges. Be assured, you healthcare team and your loved ones will pull you thru. Rick.

    Port
    You might think about getting a port , I had a PEG placement and after it healed had it replaced with a Mic-key-button no pesky tubes much better than the PEG. But the port is worth it's wait in gold ! I m so glad I did the port before treatment started. All of myy blood work , medication, chemo everything goes through the Port, no needles and constant poking ! I was also diagnosed with stage 4 scc and on my second cycle of chemo. Keep in mind beating the cancer is the easy part, beating the TX is the challenge and preparing for the battle in advance is smart
    . Keep a positive attitude!

    In Christ, Kevin
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    Options
    CivilMatt said:

    welcome
    Hard12Find,

    I am sorry about your diagnosis (scc), that is a very popular cancer for this site, it is kind of an unlucky fortunate for you. Matter-of-fact I am one of your buddies here (trying to be funny). Don’t want to scare you, just want you to know it will work out fine. If you have any questions, just ask and we will try to help. If you stay connected there shouldn’t be any surprise for you on this trip.

    To read my bio just click on the name CIVILMATT.

    Best,

    Matt

    Hello
    I saw my radiation oncologist for the first time today, after his exam he told me I was probably stage 4a, with the primary on my right tonsil, with at least 2 other nodes affected. I would have been scared to death if not for this site. I got all of my dental up to date, and heard my insurance agreed to cover the PET scan. I see my regular oncologist on Tuesday, get a feeding tube on Wednesday hopefully imaging later in the week, and start treatment the following week. Trying to start stock piling foods and gain weight. Setting up a spare bedroom for me or the wife to use when I am sick or sore. Now the hard part....getting through the treatments. Hope everyone here is doing well. God bless you all for caring enough to be here.....
    Jim
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Welcome, welcome!!!
    I'm sorry you have to find yourself here, but am SO glad you found this site...it is a lifesaver for me. I was dx'd in March...got lined up for a port, tube, and scan all in the first week...course it took a month for it all to happen. Don't worry about prematurity on the tube. If your Dr. thinks you need one take it, and if you never have to use it good for you. I never used mine till the last three months of treatment, for the side effects of chemo, no less.....nothing to do with radiation or surgery.

    Where are you located? And where are you having treatment?

    p
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    Welcome, welcome!!!
    I'm sorry you have to find yourself here, but am SO glad you found this site...it is a lifesaver for me. I was dx'd in March...got lined up for a port, tube, and scan all in the first week...course it took a month for it all to happen. Don't worry about prematurity on the tube. If your Dr. thinks you need one take it, and if you never have to use it good for you. I never used mine till the last three months of treatment, for the side effects of chemo, no less.....nothing to do with radiation or surgery.

    Where are you located? And where are you having treatment?

    p

    Welcome
    I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
    My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    Options

    Welcome, welcome!!!
    I'm sorry you have to find yourself here, but am SO glad you found this site...it is a lifesaver for me. I was dx'd in March...got lined up for a port, tube, and scan all in the first week...course it took a month for it all to happen. Don't worry about prematurity on the tube. If your Dr. thinks you need one take it, and if you never have to use it good for you. I never used mine till the last three months of treatment, for the side effects of chemo, no less.....nothing to do with radiation or surgery.

    Where are you located? And where are you having treatment?

    p

    Welcome
    I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
    My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.
  • VanessaSLO
    VanessaSLO Member Posts: 283
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    Welcome
    I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
    My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.

    Welcome!
    This is just the right place your're on! It is a life saving for me and my family. My father was diagnosed with SCC Base of tongue with multiple lymph nodes involved and is just about to finish his treatment. He had 7 Cisplatin chemos and 35 radiations, no surgery. It looks good for now, he was also stage IV.

    It's good that you start soon! My dad waitet almost 2 months! Cancer boards, check-ups, preparation for radiation... It was pretty anxious time back then.

    I believe everything will be just fine with you! Just try to gain more weight now and listen to advice from all wonderful people on this board!
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Welcome!
    This is just the right place your're on! It is a life saving for me and my family. My father was diagnosed with SCC Base of tongue with multiple lymph nodes involved and is just about to finish his treatment. He had 7 Cisplatin chemos and 35 radiations, no surgery. It looks good for now, he was also stage IV.

    It's good that you start soon! My dad waitet almost 2 months! Cancer boards, check-ups, preparation for radiation... It was pretty anxious time back then.

    I believe everything will be just fine with you! Just try to gain more weight now and listen to advice from all wonderful people on this board!

    Hello.
    Hello and welcome to our little slice of the internet, its a place that nobody
    wants to be but now you have found it you will be sure glad you did. The
    people on here are like "family" to each other and have helped us all through
    our treatments.
    I was stage 2 tonsil cancer and had 33 rads only and now almost 5 months
    out I'm doing pretty darn good, almost back to normal except for dry mouth
    and taste comes and goes.
    Anyway once again welcome.

    God bless
    Tonsil dad,

    Dan.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Hello
    I saw my radiation oncologist for the first time today, after his exam he told me I was probably stage 4a, with the primary on my right tonsil, with at least 2 other nodes affected. I would have been scared to death if not for this site. I got all of my dental up to date, and heard my insurance agreed to cover the PET scan. I see my regular oncologist on Tuesday, get a feeding tube on Wednesday hopefully imaging later in the week, and start treatment the following week. Trying to start stock piling foods and gain weight. Setting up a spare bedroom for me or the wife to use when I am sick or sore. Now the hard part....getting through the treatments. Hope everyone here is doing well. God bless you all for caring enough to be here.....
    Jim

    Hi Hard1
    You've come to the right place. From one Stage 4 to another... you CAN get through this. I did, in May of 2010, and I'm still doing great. You are in for the fight of your life, it WILL consume six to nine months of your life for treatment and recovery, and then you will be able to pick up your life and go on.

    Deb
  • ToBeGolden
    ToBeGolden Member Posts: 695
    Options

    Welcome
    I live in Yelm Washington, and will be treating at Group Health and Radient Care in Lacey Wa.
    My family doctor mentioned one of her colleges works there and that she had heard a lot of good things about them. That meant a lot because she has proven herself extremely competent as my family physician. I am both glad and surprised how fast things are moving......sooner I start the sooner I will be cancer free.

    also from WA
    I live in Bothell WA. Treated at Swedish. We are lucky to have a number or excellent medical centers in our area. Radiation is hard on you, no two ways about that. But be certain that your family, you healthcare team, and this board will pull you through.

    Eat and drink (water or Ensure) as long as you can. Use the tube if you can't swallow. I found that liquids at body temperature hurt less than either warm or cold liquids. but everyone is different. Rick.
  • Hard12Find
    Hard12Find Member Posts: 218 Member
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    also from WA
    I live in Bothell WA. Treated at Swedish. We are lucky to have a number or excellent medical centers in our area. Radiation is hard on you, no two ways about that. But be certain that your family, you healthcare team, and this board will pull you through.

    Eat and drink (water or Ensure) as long as you can. Use the tube if you can't swallow. I found that liquids at body temperature hurt less than either warm or cold liquids. but everyone is different. Rick.

    Thanks
    Rick,
    I used to live in Kenmore, and worked for Kenmore Air Harbor. Still have some friends up there. Thanks for the advice I found I had actually Wondered that very question About food temperatures, and also when putting things through the feeding tube later.
    Jim
  • hwt
    hwt Member Posts: 2,328 Member
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    Thanks
    Rick,
    I used to live in Kenmore, and worked for Kenmore Air Harbor. Still have some friends up there. Thanks for the advice I found I had actually Wondered that very question About food temperatures, and also when putting things through the feeding tube later.
    Jim

    Take a seat
    Take a seat on our bus and hang on for the ride. Happy to say there are enough of us able to stand up and give you a seat while you need it. It can be a rocky road but know that you will not get every side effect that you read about and each side effect comes in varying degrees. Some are very short lived while others tend to hang on. I always say "take it as it comes and deal with it". I hope your ride is an easy one.