Newly diagnosed with HPV neck and throat cancer

RodgerM
RodgerM Member Posts: 53 Member
in Head and Neck Cancer #1

Hi,

Early December I was diagnosed with HPV neck cancer with a primary in the back of the tongue. 

After several weeks of scans and consults I start 35 days of radiation 
and 7 (weekly) treatments of low dose chemo on Monday 12/21.
This is the current plan with no surgery and no feeding tube, and a curable prognosis.

Not looking forward to Monday but I want to get this journey started so I can get to the other side of treatments.

Rodger 

 

 

 

 

«1

Comments

  • The Cincinnati Kid
    The Cincinnati Kid Member Posts: 63 Member
    edited December 2020 #2
    Welcome mate, and good luck

    Welcome mate, and good luck to you. You've come to the right place. As you're about to start imminantly, read as much as you can on here re eating etc during treatment.

    Good luck!

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #3
    Rodger,

    I tell people this all the time - but EAT EAT EAT all of your favorites, and a LOT of them! (Radiation and chemo may mess with your sense of taste for a while.)

    It sounds like you must have caught this situation relatively early, so that appears to be good.

    I went through a treatment regimen that was similar to what you describe. It's certainly a challenge - but the people on here can help you with advice and support all the way.

    If you can keep a positive outlook - you'll get through it all, and be looking back on it before you know it. (I finished treatment about 17 months ago.....)

    Hang in there!

    mg

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited December 2020 #4
    Roger Welcome

    To the club, nobody wants to be in. Sorry, you are in for a time of cancer treatments. Just take one day at a time and check out the super thread at the top of the page. This is a great forum of folks and will be glad to help with any questions and will give you support. Take Care-God Bless Russ

  • BeagleDad
    BeagleDad Member Posts: 108 Member
    edited December 2020 #5
    Starting soon after you

    Welcome.  I was diagnosed with HPV+ primary in tonsil.  Had TORS 11-24 with radical neck dissection.  Starting chemo/low dose radiation (60 and 54G) first week in January.  So I will be a few weeks behind you, but only have 33 sessions and chemo 1/wk.  
    Still recovering from the TORS in that I cannot yet swallow solid food; just made it to pudding a few days ago.  But am enjoying the heck outta my broth recipe!  Just being able to TASTE something other than water is a milestone.  Hoping to have some solids before I get to rads .. like the other guys say ..eat eat eat .... but I cannot yet.  I am hoping I will have 1-2 weeks to gorge before the radiation effects stop my ability to.
    Good luck with the feeding tube approach .... I woke from surgery w nasal tube and just got it replaced with gastric this past Tuesday.  From what I have read here, very very few make it without a feeding tube of some sorts.  As you read the experiences of others you *might* change your mind and have one inserted before you need it.  But good luck either way.
    We'll be watching for your updates and sharing with you as you go through this ... we'll kinda be doing it together.  
    Glad you found us here ..I have taken a lot of the advice form folks and feel I am prepared for this next section of my fight.
    Don (Beagledad)

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #6
    The Cincinnati Kid said:

    Welcome mate, and good luck

    Welcome mate, and good luck to you. You've come to the right place. As you're about to start imminantly, read as much as you can on here re eating etc during treatment.

    Good luck!

    Thank You!

    Thank You!

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #7
    motorcycleguy said:

    Rodger,

    I tell people this all the time - but EAT EAT EAT all of your favorites, and a LOT of them! (Radiation and chemo may mess with your sense of taste for a while.)

    It sounds like you must have caught this situation relatively early, so that appears to be good.

    I went through a treatment regimen that was similar to what you describe. It's certainly a challenge - but the people on here can help you with advice and support all the way.

    If you can keep a positive outlook - you'll get through it all, and be looking back on it before you know it. (I finished treatment about 17 months ago.....)

    Hang in there!

    mg

    Mg thanks for your comments.I

    Mg thanks for your comments.I look forward to the day I can look back.   
    It's awesome to see success like yours. I've been eating a lot and will get all my favorites in before Monday.

    thanks! 

     

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #8
    wbcgaruss said:

    Roger Welcome

    To the club, nobody wants to be in. Sorry, you are in for a time of cancer treatments. Just take one day at a time and check out the super thread at the top of the page. This is a great forum of folks and will be glad to help with any questions and will give you support. Take Care-God Bless Russ

    Thank you.   Yep one Day at a

    Thank you.   Yep one Day at a time! 

  • RodgerM
    RodgerM Member Posts: 53 Member
    #9
    BeagleDad said:

    Starting soon after you

    Welcome.  I was diagnosed with HPV+ primary in tonsil.  Had TORS 11-24 with radical neck dissection.  Starting chemo/low dose radiation (60 and 54G) first week in January.  So I will be a few weeks behind you, but only have 33 sessions and chemo 1/wk.  
    Still recovering from the TORS in that I cannot yet swallow solid food; just made it to pudding a few days ago.  But am enjoying the heck outta my broth recipe!  Just being able to TASTE something other than water is a milestone.  Hoping to have some solids before I get to rads .. like the other guys say ..eat eat eat .... but I cannot yet.  I am hoping I will have 1-2 weeks to gorge before the radiation effects stop my ability to.
    Good luck with the feeding tube approach .... I woke from surgery w nasal tube and just got it replaced with gastric this past Tuesday.  From what I have read here, very very few make it without a feeding tube of some sorts.  As you read the experiences of others you *might* change your mind and have one inserted before you need it.  But good luck either way.
    We'll be watching for your updates and sharing with you as you go through this ... we'll kinda be doing it together.  
    Glad you found us here ..I have taken a lot of the advice form folks and feel I am prepared for this next section of my fight.
    Don (Beagledad)

    beagledad , thanks for you

    beagledad , thanks for you message...

    I really don't know if we caught it early snd why surgery isn't being done, but I am not complaining.  It Seems the primary on the back of my tongue is so small there calling them hot spots ?  I have one tumor in my neck no other spread, that I've understood.   

    Seems like radiation might be a little higher and longer without surgery.   
    My neighbor just got finished with surgery similar to yours, As well as completed all his treatments.

    He Is doing well he has lost a lot of weight and did not use a feeding tube.  He is about one month out a treatment and he's now gaining about a pound a day. 

    The best to you during your treatments, I'll be here and we can help each other thru this... 

    Rodgerm.

  • big G
    big G Member Posts: 176 Member
    edited December 2020 #10
    Newly diagnosed

    Sorry you are here, but you have come to the right place for knowledge and support. There are a lot of fine people on this site that will help you as you take on this journey. Like mg said sounds like you caught it early which is great. Take care and prayers for you.

  • Logan51
    Logan51 Member Posts: 464 Member
    edited December 2020 #11
    Rodger

    Sorry you are here, but welcome. 

    The "tumor" in your neck is likely not a tumor, but rather an enlarged lymph node with C. I had 2 of the buggers. Neither was removed, but Rads blasted them to smithereens. A biopsy was done on the top one. I was unknown Primary, and non-HPV, and they did an overkill on the Rads- which you will likely not get. If I were in your shoes, I would ask about how many Gys of Rads are going to be applied, and if a different amount per location. If you do this, please let us know. I got 68 to the bottom of my throat, and nine years out I became Feeding Tube dependent because of the scar tissue (which grows) Rad damage around my esophagus opening/aperture. Being HPV, it should not be a problem for you, but I would want to know.

    You got a not so good time ahead of you, but I considered my tx a "life experience," and hope you can, too: keep it in the Positive.

     

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #12
    Logan51 said:

    Rodger

    Sorry you are here, but welcome. 

    The "tumor" in your neck is likely not a tumor, but rather an enlarged lymph node with C. I had 2 of the buggers. Neither was removed, but Rads blasted them to smithereens. A biopsy was done on the top one. I was unknown Primary, and non-HPV, and they did an overkill on the Rads- which you will likely not get. If I were in your shoes, I would ask about how many Gys of Rads are going to be applied, and if a different amount per location. If you do this, please let us know. I got 68 to the bottom of my throat, and nine years out I became Feeding Tube dependent because of the scar tissue (which grows) Rad damage around my esophagus opening/aperture. Being HPV, it should not be a problem for you, but I would want to know.

    You got a not so good time ahead of you, but I considered my tx a "life experience," and hope you can, too: keep it in the Positive.

     

    Hey logan51,

    Hey logan51,

    Yes, I think my tumor is in the lymph node, and luckily only the one and the primary right next to it.  Not sure about the radation amount but it is IMRT so it's variable.  I will be asking what amounts on my first visit this Sunday, and get back to you.   I just had a consult with another clinic that has proton and a lower radation studies that I can participate in, but I'll be passing don't want to delay Treatment another month.  I learned a little more about thoses radation values , .   So definitely I want to suggest the lower range ..  yea I probsbly can't imagine how rough things are going to get.   
    Thanks!

  • RodgerM
    RodgerM Member Posts: 53 Member
    #13
    big G said:

    Newly diagnosed

    Sorry you are here, but you have come to the right place for knowledge and support. There are a lot of fine people on this site that will help you as you take on this journey. Like mg said sounds like you caught it early which is great. Take care and prayers for you.

    Thank you, yes it seems that

    Thank you, yes it seems that we caught this early.  I hope that make a difference on recovery and thoses long term issues.

     

  • ERomanO
    ERomanO Member Posts: 317 Member
    edited December 2020 #14
    Welcome, Roger !!

    No need for me to repeat what has already been said, other than try to eat as much as possible while you can.  That's pretty important.  I wish you the best as you begin your treatments in a couple days.  Time to hunker down and get through it.  Then you too will come out on the other side and get back into your normal life (even if it's a new normal).

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #15
    ERomanO said:

    Welcome, Roger !!

    No need for me to repeat what has already been said, other than try to eat as much as possible while you can.  That's pretty important.  I wish you the best as you begin your treatments in a couple days.  Time to hunker down and get through it.  Then you too will come out on the other side and get back into your normal life (even if it's a new normal).

    Thanks,  yes I've been eating

    Thanks,  yes I've been eating all my favorites gained 10lbs since diagnosis.  I'am scared of what's to come,  I know it's going to be tough but can't  imagine anything close to what it really will be like.    I am sort of prepare for the worse, and praying for the best.

    Rodger !  

  • ERomanO
    ERomanO Member Posts: 317 Member
    edited December 2020 #16
    RodgerM said:

    Thanks,  yes I've been eating

    Thanks,  yes I've been eating all my favorites gained 10lbs since diagnosis.  I'am scared of what's to come,  I know it's going to be tough but can't  imagine anything close to what it really will be like.    I am sort of prepare for the worse, and praying for the best.

    Rodger !  

    Ten extra pounds is good way

    Ten extra pounds is good way to start.  I had lost 10 lbs waiting for my diagnosis, then lost another 20 through treatments, so it was in the neighborhood of 2 lbs per week, and my docs were okay with that.  They said that there are patients that lose 10-15 lbs per week!  Try not to be that patient.  Nothing to be scared about.  It'll be challenging, but it's doable.  Just take each day as it comes and make the necessary adjustments along the way.  You'll be fine.

  • motorcycleguy
    motorcycleguy Member Posts: 478 Member
    #17
    Rodger,

    Well, at this point, you're either getting ready for your first treatment, or you've already finished it.

    I believe you will find that after the first one is over ... the rest isn't nearly as scary!

    Your taste should be good for at least a couple weeks. Keep eating all you can....

    Also - take good care of your skin. You'll have a bit of "sunburn" for a while. They may have free lotions for you...

    You're on your way to "ringing the bell". It will all be over before you know it!

    mg

  • RodgerM
    RodgerM Member Posts: 53 Member
    #18
    motorcycleguy said:

    Rodger,

    Well, at this point, you're either getting ready for your first treatment, or you've already finished it.

    I believe you will find that after the first one is over ... the rest isn't nearly as scary!

    Your taste should be good for at least a couple weeks. Keep eating all you can....

    Also - take good care of your skin. You'll have a bit of "sunburn" for a while. They may have free lotions for you...

    You're on your way to "ringing the bell". It will all be over before you know it!

    mg

    Thanks mg.  Yea 2 radations

    Thanks mg.  Yea 2 radations and one chemo..  feeling fine for now.  I look forward to ringing that bell.  Radation makes me a little sleepy or it's the larazapam.  Chemo feels a little warm inside but normal outside.    A bit weird.   I did take a long nap during chemo helped pass the 6 hours away.  
    Thanks again! 

  • PipLily
    PipLily Member Posts: 127 Member
    #19
    Hello!

    Hello and, a little late on my part, but welcome! My husband completed TORS, 30 Radiation doses, and two rounds of Cisplatin on June 3. He is doing amazing. He completed treatment without a gastric tube. It was challenging to say the least, but doable. As all on this site attest to. Just focus on getting the most bang for your buck in terms of calories and protein with each “meal “. My husband lost about 35# total during treatment...from surgery to the end. He was BOT primary, 2 positive nodes, HPV positive. As you say....excellent prognosis. Hang in there!

  • Mattie65
    Mattie65 Member Posts: 82 Member
    #20
    motorcycleguy said:

    Rodger,

    Well, at this point, you're either getting ready for your first treatment, or you've already finished it.

    I believe you will find that after the first one is over ... the rest isn't nearly as scary!

    Your taste should be good for at least a couple weeks. Keep eating all you can....

    Also - take good care of your skin. You'll have a bit of "sunburn" for a while. They may have free lotions for you...

    You're on your way to "ringing the bell". It will all be over before you know it!

    mg

    My taste …

    … just wanted to add the fact that in my case, taste went away within 5 days of radiation, so: I would prefer to advise to not rely too much on being able to eat normally during the first couple of weeks.

    It's really very individual and eating gets scarily difficult once the taste problems arise.

  • RodgerM
    RodgerM Member Posts: 53 Member
    edited December 2020 #21
    PipLily said:

    Hello!

    Hello and, a little late on my part, but welcome! My husband completed TORS, 30 Radiation doses, and two rounds of Cisplatin on June 3. He is doing amazing. He completed treatment without a gastric tube. It was challenging to say the least, but doable. As all on this site attest to. Just focus on getting the most bang for your buck in terms of calories and protein with each “meal “. My husband lost about 35# total during treatment...from surgery to the end. He was BOT primary, 2 positive nodes, HPV positive. As you say....excellent prognosis. Hang in there!

    Good to hear this.  just

    Good to hear this.  just Looking forward to the other side of this.  

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