What to expect now

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  • Dave705
    Dave705 Member Posts: 62 Member
    #22
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    big G said:

    Treatment

    Dave705

    Sounds like you caught it early. Radiation tx affects people differently, I think most have the dry mouth, some get burns some don't. Remember to keep drinking and eating even if you loose your sense of taste as I did in week 2. I used Aquaphor daily after treatments which I believed leaving my neck with no redness or burn. It is a little greasy but it works. You will find products to help you with the dry mouth. Good luck and god bless

    Thank You

    Thanks So much for your thoughts and encouragement! Been eating like crazy this past week to try and get my weight up before treatments start, which I am guessing will be in a week. Already stockpiling many items for eating and drinking during treatment. Happy Easter

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #23
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    Agee About Eating Now

    I thought I would not lose much weight.  I was wrong about that.  I am normally a vegetarian.  I did eat meat before I started radiation and glad I did.  I think it was mostly phycological, but whatever works.  My doc said the week after the last week of radiation would be the worst, made no sense to me, but he was right.  Yep there were some hard times, but all worth it for sure.  Hanging around others who made it though was a big help.  I had a friend who breezed right though no problems and another who had a hard time, both were a big help to me.  The advice to keep eating and drinking no matter what is good advice.  You will get though this and your outcome sounds very very promising.

  • TRE1
    TRE1 Member Posts: 1
    edited April 2020 #24
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    Tonsil hpv16

    Hi Dave...when you get a chance, please email me at <Content removed by CSN Support Team>.  Thanks, Todd

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #25
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    PipLily said:

    Awesome news ....

    Sounds like my husband is at about the same place time line wise as you. Gets fitted for his mask Monday......had TORS mid March. Wishing you the very best!! Happy for your good news for you! Take care! 

    Thanks

    Thank you for the kind words. Wishing your husband the best of luck too!

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #26
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    PipLily said:

    Awesome news ....

    Sounds like my husband is at about the same place time line wise as you. Gets fitted for his mask Monday......had TORS mid March. Wishing you the very best!! Happy for your good news for you! Take care! 

    How is he doing?

    Was wondering how your husband is doing. Has he started his treatments yet? My first is May 4th. Hope he his doing well

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #27
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    Dave705 said:

    Thanks so much for your info.

    Thanks so much for your info. Will keep my spirits up that it may not be as worse as tonsil remoVal.

    DX

    Hi Dave705, did you get a diagnosis?  Over 90% of members here had SCC.  I had MEC instead.  Not as bad as SCC but as painful as yours because they removed a large tumor from the base of my tongue.  The pain was the worst ever.  Pain meds did nothing and I even doubled up.  It took a few months until the pain was low enough to swallow w/o slapping my leg repeatedly.  Doc said it was the same for those who get their tonsils removed like you did.

    My neck dissection was a piece of cake compared to my tongue.  Only have a numb neck but no pain.  Rads haven't done too much damage yet either so maybe you'll be spared too.

    Heal well.

  • Dave705
    Dave705 Member Posts: 62 Member
    #28
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    tommyodavey said:

    DX

    Hi Dave705, did you get a diagnosis?  Over 90% of members here had SCC.  I had MEC instead.  Not as bad as SCC but as painful as yours because they removed a large tumor from the base of my tongue.  The pain was the worst ever.  Pain meds did nothing and I even doubled up.  It took a few months until the pain was low enough to swallow w/o slapping my leg repeatedly.  Doc said it was the same for those who get their tonsils removed like you did.

    My neck dissection was a piece of cake compared to my tongue.  Only have a numb neck but no pain.  Rads haven't done too much damage yet either so maybe you'll be spared too.

    Heal well.

    Thanks

    Thanks for the info. My diagnosis was tonsil cancer. Since they removed the tumor from my tight tonsil, this will be a cleanup as I had clear margins. Only radiation on right side, but still probably won't be a picnic. Thanks for the kind words. May 4 is when I start.

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    edited April 2020 #29
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    Dave705 said:

    Thanks

    Thanks for the info. My diagnosis was tonsil cancer. Since they removed the tumor from my tight tonsil, this will be a cleanup as I had clear margins. Only radiation on right side, but still probably won't be a picnic. Thanks for the kind words. May 4 is when I start.

    Similar

    It almost sounds like you and I had the same thing.  No chemo for me, just rads.  It was also my right side.  The rads aren't too bad with the exception of the gunk in the throat and sunburnt neck.  Still, not too nasty.  You'll come through with flying colors.

  • Dave705
    Dave705 Member Posts: 62 Member
    edited April 2020 #30
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    tommyodavey said:

    Similar

    It almost sounds like you and I had the same thing.  No chemo for me, just rads.  It was also my right side.  The rads aren't too bad with the exception of the gunk in the throat and sunburnt neck.  Still, not too nasty.  You'll come through with flying colors.

    Thanks

    That all sounds great! Hoping you are correct 

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #31
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    Dave705 said:

    How is he doing?

    Was wondering how your husband is doing. Has he started his treatments yet? My first is May 4th. Hope he his doing well

    Hello!

    My husband had his first radiation, and first Cisplatin this past Wednesday. As far as the radiation, he did great! No claustrophobia, but the chemo has been more challenging than I think we were prepared for. He hasn’t gotten sick, but just feels like he was run over by a Mack truck. He has slept so much! I’ve really had to stay on top of waking him up to eat and drink enough. This afternoon has been a bit better, so I’m thankful for that. If I remember correctly, you are receiving radiation, no chemo? I’m happy for you, at least, for that victory! The waiting to get started is difficult, isn’t it? My husband just wanted to get going, to be done! Stay in touch, and let us know how you’re doing! Will be thinking of you....

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #32
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    Mavish said:

    Hi Dave,

    Hi Dave,

    I went thruogh same thing.I had a big  right lymph node, they couldn'se anyting in PET MRI. They found SCC in the rigth tonsil, when they took it out. This was 4 years ago. They also remove my lymphnodes on the right side. All were normal. I saw both radiation and medical oncologists. They decided to proceed with just RT. I did not take Chemo. If your cancer is p16 positive, there were studies ongoing 4 years ago investigating less intensive therapies for p16 positive SCC. I am cancer free but suffering from long term radiation side effects( they are not too bad). I suggest you to discus your doctor all treatment options, especially ones less intensive. For example they are giving Radiation little less tha p16 - cancers. This is important for long term life quality.  Journey  is tuff but this is a curable cancer. I wish all the best and good luck.

    Hi Mavish...

    It will be so interesting to see what these new studies come up with in the way of de-escalation for HPV Positive. My husband ALMOST declined chemo based on much research and reading of the de escalation trials, and the opinion of his Surgeon, who specializes only in Head and Neck Cancer, who said he would not recommend chemo. But Medical and Radiation Oncology both said it was necessary.....unfortunately, until trials officially come out, they have to be guided by current guidelines, and current guidelines say that because one of his nodes had minimal ENE, chemo was required. But we sure debated......like you said, Quality of life! Hard not to want to give it everything for the cure , though.......

    Take care!

  • PipLily
    PipLily Member Posts: 127 Member
    edited April 2020 #33
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    Dave705 said:

    Thanks

    Thank you so much for the wishes. My radiation doctor has told me of long term side effects, mostly dry mouth. looking forward to June, as that is when my treatments will be over.

    June!

    We also are looking forward to June!!! Good luck! It will go fast, hopefully. 

  • Dave705
    Dave705 Member Posts: 62 Member
    #34
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    PipLily said:

    Hello!

    My husband had his first radiation, and first Cisplatin this past Wednesday. As far as the radiation, he did great! No claustrophobia, but the chemo has been more challenging than I think we were prepared for. He hasn’t gotten sick, but just feels like he was run over by a Mack truck. He has slept so much! I’ve really had to stay on top of waking him up to eat and drink enough. This afternoon has been a bit better, so I’m thankful for that. If I remember correctly, you are receiving radiation, no chemo? I’m happy for you, at least, for that victory! The waiting to get started is difficult, isn’t it? My husband just wanted to get going, to be done! Stay in touch, and let us know how you’re doing! Will be thinking of you....

    Thanks for responding

    You are correct about the waiting. All I am doing is eating to try and get my weight up higher. Hope that things turn around for the better for your husband. Thanks for the kind words.

  • Dave705
    Dave705 Member Posts: 62 Member
    edited May 2020 #35
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    Starting Radiation Treatments

    Monday May 4th, starting my radiation treatment. 2 spots, right side only. I want to thank everyone for their information and wishes on this site. I have learned so much. I will be counting the days til June 12, my last day. Hoping the next 6 weeks go well.

  • PipLily
    PipLily Member Posts: 127 Member
    edited May 2020 #36
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    Dave705 said:

    Starting Radiation Treatments

    Monday May 4th, starting my radiation treatment. 2 spots, right side only. I want to thank everyone for their information and wishes on this site. I have learned so much. I will be counting the days til June 12, my last day. Hoping the next 6 weeks go well.

    Good luck!

    Just wanted to wish you good luck on Monday! Hope all goes well the first day, and onward! Looking forward to June with you!!

    Elizabeth

  • Dave705
    Dave705 Member Posts: 62 Member
    edited May 2020 #37
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    PipLily said:

    Good luck!

    Just wanted to wish you good luck on Monday! Hope all goes well the first day, and onward! Looking forward to June with you!!

    Elizabeth

    Thanks

    Day 1 in the books. A little tough when they locked the masked down. But just kept breathing deeply and relaxing. Before I new it,, it was over. I am sure it will all be better now that the first one is out of the way.

  • PipLily
    PipLily Member Posts: 127 Member
    #38
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    Dave705 said:

    Thanks

    Day 1 in the books. A little tough when they locked the masked down. But just kept breathing deeply and relaxing. Before I new it,, it was over. I am sure it will all be better now that the first one is out of the way.

    Agreed!!

    My husband said the exact same thing! First day kind of freaked him out! But he’s in there right now, on the treatment #9, and the appointment itself doesn’t bother him. He looks at it like one more down! Hang in there, and take good care!

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    edited May 2020 #39
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    Keep Going

    When I was going though it I looked at each day as more cancer gone and that was true.  Keep going it is well worth it and there is the other side.

  • Dave705
    Dave705 Member Posts: 62 Member
    #40
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    HobbsDoggy said:

    Keep Going

    When I was going though it I looked at each day as more cancer gone and that was true.  Keep going it is well worth it and there is the other side.

    Thanks

    Thank you for your words of encouragement!

  • Logan51
    Logan51 Member Posts: 465 Member
    #41
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    2 spots...

    Dave- only 2 spots is a very good thing. They might zap from different angles, but still just 2 spots would seem to be minimal Rads. I was unknown Primary so they zapped me in 20 places/session, but I think more typical is around 10 when the Primary site(s) is known. I would not worry about the Rads you're getting, Dave= good news. 

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