The Beginning

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I recently found out that I have squamous cell cancer of the tonsil and in one lymph node on the left side. The tonsil has been removed. I met with my radiation Dr for the 1st time today. We plan to start the 7 week treatment plan plus 3 sessions of chemo beginning the end of October. I have been reading all of the posts on this discussion board and I really appreciate all of the information that all of you have provided. I wanted to introduce myself and my situation and I hope to stay in touch with all of you as I venture through this journey. I am trying to stay as positive and as brave a possible:)
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  • Billie67
    Billie67 Member Posts: 898
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    Welcome
    Welcome to a group that nobody ever really wants to belong to. We welcome you with open arms and all of our support. If you tell us what kind of chemo you are going to have we can help you to understand that path a little better. There are so many types of chemo and so many of us, someone can tell you just what you can expect. As for radiation, ask away if you have any questions, we can pretty much all share our stories and hopefully make it easier for you.
    It's very normal to be scared, I know I was! Thankfully I found this site and felt much better after I did. Lucky for you, you found it before treatment begins, I was at the end when I found all these wonderful people.
    Where do you live and where will you have treatment?
    Billie
  • Joanielo
    Joanielo Member Posts: 55
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    Billie67 said:

    Welcome
    Welcome to a group that nobody ever really wants to belong to. We welcome you with open arms and all of our support. If you tell us what kind of chemo you are going to have we can help you to understand that path a little better. There are so many types of chemo and so many of us, someone can tell you just what you can expect. As for radiation, ask away if you have any questions, we can pretty much all share our stories and hopefully make it easier for you.
    It's very normal to be scared, I know I was! Thankfully I found this site and felt much better after I did. Lucky for you, you found it before treatment begins, I was at the end when I found all these wonderful people.
    Where do you live and where will you have treatment?
    Billie

    Thank You!!
    Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.
  • Joanielo
    Joanielo Member Posts: 55
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    Billie67 said:

    Welcome
    Welcome to a group that nobody ever really wants to belong to. We welcome you with open arms and all of our support. If you tell us what kind of chemo you are going to have we can help you to understand that path a little better. There are so many types of chemo and so many of us, someone can tell you just what you can expect. As for radiation, ask away if you have any questions, we can pretty much all share our stories and hopefully make it easier for you.
    It's very normal to be scared, I know I was! Thankfully I found this site and felt much better after I did. Lucky for you, you found it before treatment begins, I was at the end when I found all these wonderful people.
    Where do you live and where will you have treatment?
    Billie

    Thank You!!
    Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.
  • Joanielo
    Joanielo Member Posts: 55
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    Billie67 said:

    Welcome
    Welcome to a group that nobody ever really wants to belong to. We welcome you with open arms and all of our support. If you tell us what kind of chemo you are going to have we can help you to understand that path a little better. There are so many types of chemo and so many of us, someone can tell you just what you can expect. As for radiation, ask away if you have any questions, we can pretty much all share our stories and hopefully make it easier for you.
    It's very normal to be scared, I know I was! Thankfully I found this site and felt much better after I did. Lucky for you, you found it before treatment begins, I was at the end when I found all these wonderful people.
    Where do you live and where will you have treatment?
    Billie

    Thank You!!
    Thank you for the warm welcome!! I have not yet been told which chemo will be used for my treatment. As soon as I find out, I will ask for input. I live in Sacramento California and will be treated at Kaiser.
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    Howdy
    Hi Joanielo,

    Welcome, I see you’ve met Billie (this evening’s greeter), she’s a real trooper. Just take a seat, kick off your shoes and try to relax your journey will be over before you know it. We are all here at your beckon call to answer question, offer advice and be a sounding board for what ever bugs you. If you are looking for the unvarnished truth about cancer surgery, radiation and chemotherapy, you’ve come to the right place. If you are looking for a hand or a shoulder to cry on, you come to the right place. So, once again, welcome, it is nice to meet you and things seem scarier then they really are. I made it through treatments and I am definitely not the bravest one the H&N warriors.

    Best,

    Matt
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi thiere :).....
    As Matt and Billie said....you have come to the right place for information and support. I got lucky like you, and found this little haven before I started treatment and haven't left for even a day, since.

    We all start out scared, but it appears to me in my 6 months here, that our inner warriers come out when the nit hits the grit. You can't ask any question that someone can't help you with....nothing here is embarrassing, or off subject. You will find many of us who have been thru treatment, and some who are will be going thru it with you....I found it very comforting to stick close to those here...I hope you do also.

    p
  • Joanielo
    Joanielo Member Posts: 55
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    Hi thiere :).....
    As Matt and Billie said....you have come to the right place for information and support. I got lucky like you, and found this little haven before I started treatment and haven't left for even a day, since.

    We all start out scared, but it appears to me in my 6 months here, that our inner warriers come out when the nit hits the grit. You can't ask any question that someone can't help you with....nothing here is embarrassing, or off subject. You will find many of us who have been thru treatment, and some who are will be going thru it with you....I found it very comforting to stick close to those here...I hope you do also.

    p

    Working
    Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Joanielo said:

    Working
    Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?

    Hi Joanielo!
    I did not work during treatment. I took a 12-week medical FMLA medical leave and then another 12 weeks after that. I had base of tongue SCC with lymph node involvement on both sides so I was stage 4. I had eight weeks of concurrent rads and chemo and they gave me cisplatin. I was able to go back to work full time after the 24 weeks.

    Deb (Waves hello from near Columbia State Historic Park 2 hours south of Sacramento.)
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    D Lewis said:

    Hi Joanielo!
    I did not work during treatment. I took a 12-week medical FMLA medical leave and then another 12 weeks after that. I had base of tongue SCC with lymph node involvement on both sides so I was stage 4. I had eight weeks of concurrent rads and chemo and they gave me cisplatin. I was able to go back to work full time after the 24 weeks.

    Deb (Waves hello from near Columbia State Historic Park 2 hours south of Sacramento.)

    Hi
    Hi Joanielo and welcome to our piece of the internet. Sorry
    your here but you will be sure glad you found it.
    I was dx with stage II tonsil cancer (left) on November 18 , 2011
    and didn't start treatment until March 1st 2012. I had 33 rad
    treatments only (no peg) and went through it pretty much ok.
    I work for myself so work was pretty much what I wanted to
    do when I felt like it. I am now almost 7 months out and doing
    pretty good, my taste and saliva are still way off but I'm here typing
    on a survivors network with all the other survivors. I Wish you the
    best,
    Have faith and keep positive,

    God bles
    Tonsil dad,

    Dan.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Hi
    Hi Joanielo and welcome to our piece of the internet. Sorry
    your here but you will be sure glad you found it.
    I was dx with stage II tonsil cancer (left) on November 18 , 2011
    and didn't start treatment until March 1st 2012. I had 33 rad
    treatments only (no peg) and went through it pretty much ok.
    I work for myself so work was pretty much what I wanted to
    do when I felt like it. I am now almost 7 months out and doing
    pretty good, my taste and saliva are still way off but I'm here typing
    on a survivors network with all the other survivors. I Wish you the
    best,
    Have faith and keep positive,

    God bles
    Tonsil dad,

    Dan.

    Hi ...
    I was stage III base of tongue w one lymph node left side.

    I had radiation and Erbitux for treatment and I am now 8 months out from last rad and NED :)

    I did have a PEG tube (feeding tube) before treatments ever began..might want to ask about that. I did not work during treatments...but you might want to ask "could you work during treatments" my answer would be no....side affects to rough...

    I lost 70lbs in treatment (not the norm) but you need to eat and gain all the weight you can ..protein will be your best friend in tx ....you will burn 3,000 - 5,000 cals a day due to radiation (is what I was told)..your body will need the protein to heal.

    You did not say if you were HPV+ ..I would ask that question.

    Best,

    Tim
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Joanielo said:

    Working
    Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?

    I was retired before treatment. You will have the worse sunburn imaginable. When I went with my wife to one of her doctor visits, many members of that staff asked if a doctor had seen my sunburn. Of course, they understood when I told them it was radiation therapy. I'm saying this because I think you will not want your coworkers see you when you are at your worst (of course that does not include close friends who are also coworkers). And you won't be able to cover up the "burns"; too painful to have anything touch the skin. In my experience anyway. Rick.
  • Billie67
    Billie67 Member Posts: 898
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    I was retired before treatment. You will have the worse sunburn imaginable. When I went with my wife to one of her doctor visits, many members of that staff asked if a doctor had seen my sunburn. Of course, they understood when I told them it was radiation therapy. I'm saying this because I think you will not want your coworkers see you when you are at your worst (of course that does not include close friends who are also coworkers). And you won't be able to cover up the "burns"; too painful to have anything touch the skin. In my experience anyway. Rick.

    No work
    I did not work during treatments. Mainly because I had surgery first and it left me on voice rest and I'm a Pre school teacher.....no voice and 20 4 year olds don't go well together :-)
    And once the treatment kicked in I didn't have a lot of energy and towards the end of rads I was sick and had some pain so I wouldn't have been able to work on pain meds. There are people who don't have a lot of side effects and can probably work. In my case I needed to avoid all the kids anyway because of viruses and whatnot. I guess it will all depend on what kind of work you do and what kind and how many side effects you end up with.
    I'm in California too by the way....southern CA
    Billie
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Joanielo said:

    Working
    Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?

    I thought I'd be working in the beginning....
    but my lung got punctured putting the port in, so ended up a week in the hospital, and when I got out, rads and chemo started right away....no way in hell could I do rads everyday and go to work too. I took a 6 month short term diasbility from work. I'm just about to go back to work now (in a week), even tho I'm only 6 weeks out of treatment. We'll see how that goes. I'm still pretty tired, about 75% of my norm.

    If it turns out that working nights is just too much for me I"ll retire...I'm more than a little anxious about being able to pull this off.

    p
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    I thought I'd be working in the beginning....
    but my lung got punctured putting the port in, so ended up a week in the hospital, and when I got out, rads and chemo started right away....no way in hell could I do rads everyday and go to work too. I took a 6 month short term diasbility from work. I'm just about to go back to work now (in a week), even tho I'm only 6 weeks out of treatment. We'll see how that goes. I'm still pretty tired, about 75% of my norm.

    If it turns out that working nights is just too much for me I"ll retire...I'm more than a little anxious about being able to pull this off.

    p

    Joan
    Like Phrannie and the others have said, anxiety is very much part of the pre-treatment experience, and it hits us all. That's primarily because of all the unknowns we know are coming our way, and that the adversary we're fighting is real bad. That said, there is one little known that you can hold onto and keep with you constantly: you ARE gonna survive this thing (so get used to it!).

    I'm 3 1/2-years, and there's those among us who are over 15, and when they went thru the tx the C med community wasn't as advanced as they are now. The fact this is late 2012 is a better thing, Joan. It's not gonna be a walk in the park, but it's not exactly katie-bar-the-door, either. Lot depends on the specifics of your C and treatment. Always remember: very much part of your Dr's job in helping you get rid of the C is for you to be able to handle the tx with the side-effects staying acceptable to you- SO, keep your Drs in the loop with how you are physically doing, so they will know when you need help with the physical, if you do. Also, some have needed mental help with it all, and that's entirely acceptable, also.

    And, yes, if your Drs think your ability to take-in nutrition might get to be a problem, then a PEG is a good solution. Got mine before tx started, and used exclusively the last 7 weeks of tx, and beyond a couple weeks. Some have made it thru without a PEG, but a number have also suffered more than maybe necessary because they didn't have the easy way to bypass the mouth and throat to get nutrition into the stomach. Nutrition is very important- gives your body the ammo it needs to fight the best fight possible. Simple as that. The standard is to go with whatever your Drs advise as best, but to make sure your Drs have it on the table as a possible you will need, and realize the best time to get a PEG installed is before tx begins.

    We're all different, Joan, just as the specifics of our Cs are different. Some make it thru without many complications, and a number have been able to continue working thru it all. If you are getting concurrent chemo and rads, though, it might be wise to plan on taking some time off (even if for no other reason than the chemo compromises the immune system, and you don't need to pick up a virus from somebody else). I took 3-months off work as a factory Inspector, and returned one month after my last rad.

    You got many years ahead of you, Joan. True, this is a bit of rough road looking you in the face, but that's all it is. You will survive-

    Believe

    kcass
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    greetings
    welcome to the home of homes

    go get the beast and give a foot kicking for each of us.

    prayers being sent for you and your caregivers

    john
  • Sam999
    Sam999 Member Posts: 319 Member
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    fisrpotpe said:

    greetings
    welcome to the home of homes

    go get the beast and give a foot kicking for each of us.

    prayers being sent for you and your caregivers

    john

    Hi,
    Sorry you had to join

    Hi,

    Sorry you had to join us, but if you had too, this is one of the best places, folks on this site helped me thruout my treatment.

    I also thought i will continue to work at first but the emotional and physical toll on the body was overpowering and i took 4 month leave. If you could, i would suggest taking leave. First couple of weeks are pretty okay. At the minimum, i would say take 4 to 8 weeks starting 5 th weeks of rads.

    Sam
  • amy_h414
    amy_h414 Member Posts: 98
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    Joanielo said:

    Working
    Did any of you continue to work at the beginning of your treatments? How long after the treatments ended before you felt like returning to work?

    work
    My husband worked the entire time he was in treatment. He works at home though, if he'd had to go to an office it might have been a different story.
  • VivianLee5689
    VivianLee5689 Member Posts: 546
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    Sam999 said:

    Hi,
    Sorry you had to join

    Hi,

    Sorry you had to join us, but if you had too, this is one of the best places, folks on this site helped me thruout my treatment.

    I also thought i will continue to work at first but the emotional and physical toll on the body was overpowering and i took 4 month leave. If you could, i would suggest taking leave. First couple of weeks are pretty okay. At the minimum, i would say take 4 to 8 weeks starting 5 th weeks of rads.

    Sam

    Welcome you have found a great community
    I am sorry you have been diagnosed with Cancer. I know how stressful it is to get the diagnosis and all the craziness that starts to happen afterward. My husband was diagnosed July 26 with Stage IV BOT cancer. He went in to have a bronchial cleft cyst removed, which turned out to be squamous cell carcinoma the size of a baseball. September 19 he had the davinci robotic system remove part of the right side base of his tongue and have a feeding tube placed. He has been losing a lot of weight already and he starts chemo/radiation the end of October as well. It has been my experience since coming to this site that everyone is so helpful and full of wisdom. It is a great resource/support system for me. Keep coming back. I will be praying for you.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome....
    I had very similar from the sound of both your Dx and your treatment plan...three years ago.

    STGIII SCC HPV+ Right Tonsil and Lymphnode on the same side.

    Nine weeks (three cycles) of Cisplatin, Taxotere and 5FU, then the seven weeks of concurrent weekly Carboplatin and daily Rads.

    Linda - Osmotar on here had the same Tx plan and similar Dx I believe, as well as a few others.

    Stay brave and posditive as you mention....

    Many here have gone through the ringer and survived to have a great live after Tx, you will also.

    You have found a great place with awesome people.

    Best,
    John
  • katenorwood
    katenorwood Member Posts: 1,912
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    Hello and welcome !
    Joanielo,
    You've come to an excellant site ! I have found the insightfulness of this group as a whole amazing. I have a different dx, but still considered H/N. (ACC) I am so glad to hear the positive note in your post ! We are here for you, and will be with you through out your journey. All my best to you ! Katie