HPV and oral/throat cancer

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  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #22
    sweetblood22 said:

    I responded on your thread
    I responded on your thread about "how long can you live on Ensure", didn't realize you posted here, as well.

    If he isn't losing weight, and he is taking in enough calories, I'm not sure I'd nag him. It's really hard to explain to someone that hasn't gone through this whole ordeal, how difficult it can be to eat again. Having no taste, sometimes no smell, and sometimes having it taste like salty metal, combined with no saliva, or pain , or any combination thereof, makes for a very difficult time eating. Believe me when I tell you, as frustrating as it is for you, it's about 1,000x worse for him.

    No peg certainly makes it even more difficult. If he is getting enough calories, but only through the ensure, I would think that's good.

    Thanks
    I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

    Thanks everyone for your support


    Linda
  • elwoodsinoakdale
    elwoodsinoakdale Member Posts: 71 Member
    #23
    sweetblood22 said:

    I responded on your thread
    I responded on your thread about "how long can you live on Ensure", didn't realize you posted here, as well.

    If he isn't losing weight, and he is taking in enough calories, I'm not sure I'd nag him. It's really hard to explain to someone that hasn't gone through this whole ordeal, how difficult it can be to eat again. Having no taste, sometimes no smell, and sometimes having it taste like salty metal, combined with no saliva, or pain , or any combination thereof, makes for a very difficult time eating. Believe me when I tell you, as frustrating as it is for you, it's about 1,000x worse for him.

    No peg certainly makes it even more difficult. If he is getting enough calories, but only through the ensure, I would think that's good.

    Thanks
    I am feeling better after reading the post on here, about how alot of people had problems eating. Steve says food just does not taste good, I have to stop nagging at him to eat, it is just scary as hell. He does eat on his good days, I guess I expect to much from him. I looked on the calander and realized he wont be 4 months post until the 20th of this month.

    Thanks everyone for your support


    Linda
  • michdjp
    michdjp Member Posts: 220
    #24
    cam1234 said:

    The HPV effect...
    I finished Tx(11 weeks ago) for SCC base of tongue with 2 nodes..stage 4A with HPV P16. Had my Tx. at Hopkins(stellar). The before Tx. and after Tx. pics of the PET of the tumors were unreal....that is; The response to treatment was GREAT. No surgery was required. The Hopkins Docs say that, if you throw in HPV, the disease is over-treated. They also said that the cure rate for the disease (with HPV) is(I kid you not)...too high. They are starting clinical trials with a scaled down version of Tx. with light radiation and NO chemo. Having the disease with HPV greatly improves(so I'm told) the response to Tx., and long term survival.

    Great to hear!!!
    my dad was
    Great to hear!!!
    my dad was just diagnosed with scc leftg tonsil and lymph node HPV + and has had 8 IMRT treatments and one cisplatin 76mg treatment. they may switch the chemo drug to carbo/taxol due to strain in kidneys.. what was your treatment? thank you for the encourging news regarding this type of cancer because everyone at the hospitals get me soooo worried
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #25
    michdjp said:

    Great to hear!!!
    my dad was
    Great to hear!!!
    my dad was just diagnosed with scc leftg tonsil and lymph node HPV + and has had 8 IMRT treatments and one cisplatin 76mg treatment. they may switch the chemo drug to carbo/taxol due to strain in kidneys.. what was your treatment? thank you for the encourging news regarding this type of cancer because everyone at the hospitals get me soooo worried

    Same Same
    I responded in one of your other posts....

    Best,
    John
  • curt123
    curt123 Member Posts: 1
    #26
    Skiffin16 said:

    Same Same
    I responded in one of your other posts....

    Best,
    John

    Finished treatments almost 4 weeks ago
    I was part of the study at Hopkins that used reduced radiation treatments. I still had 36 radiation treatments and 7 chemo treatments. I'm starting to eat solid foods again. I did get the feeding tube and I really hate this thing and can't wait to have it taken out. I'm wondering about "Now What" Will I have HPV for the rest of my life as there is no cure for it? Am I a carrier of HPV if someone drinks after me could they get HPV 16? If I blow out candles on a birthday cake is there a possibility that I could infect someone else with HPV 16? I guess that I am lucky to have had an HPV 16 positive tongue base cancer rather than a negative. From what I’ve read the survivability rates are much higher after 5 years but what about 10 year rates? I haven’t seen any of those yet? The whole experience has been very unpleasant to say the least. I have one more week off and then I’m going back to work ready or not. I’m not feeling great at the moment but it could be worse. I came off the pain meds maybe a little too fast and felt very depressed for a while but I think that could have been a result of coming off the meds too fast? I’ll continue to pray for everyone that has any type of cancer. I saw a lot of suffering people down at Hopkins when I was going through my treatments and it really opened my eyes to just how big a problem this really is. I saw a lot of grey people down there. I think the chemo turns people’s skin grey. I’m surprised there hasn’t been a book or movie with the title “Grey People” about the pain and suffering going on everywhere in the world caused by cancer.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #27
    curt123 said:

    Finished treatments almost 4 weeks ago
    I was part of the study at Hopkins that used reduced radiation treatments. I still had 36 radiation treatments and 7 chemo treatments. I'm starting to eat solid foods again. I did get the feeding tube and I really hate this thing and can't wait to have it taken out. I'm wondering about "Now What" Will I have HPV for the rest of my life as there is no cure for it? Am I a carrier of HPV if someone drinks after me could they get HPV 16? If I blow out candles on a birthday cake is there a possibility that I could infect someone else with HPV 16? I guess that I am lucky to have had an HPV 16 positive tongue base cancer rather than a negative. From what I’ve read the survivability rates are much higher after 5 years but what about 10 year rates? I haven’t seen any of those yet? The whole experience has been very unpleasant to say the least. I have one more week off and then I’m going back to work ready or not. I’m not feeling great at the moment but it could be worse. I came off the pain meds maybe a little too fast and felt very depressed for a while but I think that could have been a result of coming off the meds too fast? I’ll continue to pray for everyone that has any type of cancer. I saw a lot of suffering people down at Hopkins when I was going through my treatments and it really opened my eyes to just how big a problem this really is. I saw a lot of grey people down there. I think the chemo turns people’s skin grey. I’m surprised there hasn’t been a book or movie with the title “Grey People” about the pain and suffering going on everywhere in the world caused by cancer.

    Grey People...
    Hi Curt, welcome to the forum...awesome place with many great people here.

    LOL, kind of funny you mention reduced radiation and you had 36 sessions which is more than most of us had at 35... Maybe you had a reduced level of intensity..mine was like 6000 - 7000 Gray or Rads, I always confuse the two, and I don't care to remember, LOL.

    I'm not so sure to say that you still do have HPV... While it is not sureable as you say, most people do clear the body of it with health immune systems.

    And most of what I have read, the thought is it would be passed through bodily fluid exchange.

    Congrats on finishing up treatment....

    As for "What's Now"....you wait, you continue on with life, you recover, and you stay persistant with your follow-ups.

    BTW, there are a lot of people here that are out past ten years....

    I was STGIII SCC Tonsils and Lymphnode, HPV+...clean and clear since Jun2009.

    Best,
    John

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