Stage 4 level A Squammous Cell Carconoma P16 POSITIVE SO HPV

Matt29
Matt29 Member Posts: 62
in Head and Neck Cancer #1
Hi everybody i have posted on here before but after getting a couple of opnions i'm now going to be at MD Anderson in Orlando fl for all of my treatments i have met with all the doctors and they are suggesting 7 rad treatments on one side of the neck and Cisplastin once every 3 weeks so 2 maybe 3 chemo sessions they told me my cure was 80-90% which is good they also told me i could be part of the study that they use a bio agent called Eribtux anybody ever used this? it would be a randomize treatment.thank you for all the help

Comments

  • osmotar
    osmotar Member Posts: 1,006
    #2
    Good Luck
    with all your treatments!!

    Linda
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    Hey Matt
    A number of us have been on erbitux. Its a reasonable adjunct to your treatment. The side effects are not dangerous, but can occasionally be pretty unpleasant. I was one of those who had a pretty rough time on the drug, but I would do it all again despite the problems. You can read about it by clicking on my name and reading my history and blog.

    Pat
  • RogerRN43
    RogerRN43 Member Posts: 185
    #4
    Erbitux
    I would research and ask your doctors about it.
    I don't know if there are more studies to support or refute the following, but it is something I always remember when someone says they are HPV+ and Erbitux has been offered. From a thread on OCF last fall:

    "For example, HPV-positive cancers are driven by the expression of viral oncoproteins and are associated with lower epidermal growth factor receptor (EGFR) levels than are HPV-negative cancers.[17] This has potential implications with regard to cetuximab sensitivity in HPV-positive tumors. A retrospective study out of Memorial Sloan-Kettering recently suggested that HPV-positive patients treated with cetuximab plus radiation have worse outcomes than patients treated with cisplatin and radiation.[18] It is imperative that current and future studies address specific therapies for HPV-positive and HPV-negative cancers; such studies need to focus on tumor biology, treatment intensity, and curability, and they need to acknowledge the fact that patients with HPV-positive tumors tend to be young and otherwise healthy—with the result that failures in this setting can be catastrophic."

    http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=141578

    What I do know is Erbitux is less damaging than the platinum drugs.
    I have lost a bit of hearing and I have mild neuropathy in the soles of my feet from the large Cisplatin doses I received.
    Again, I can't tell you which is better, just what I've read and experienced.

    I'm wondering why you are not getting a smaller dose of rads to the opposite side? If you have lymphatic involvement, how can the docs be sure there is no microscopic activity on the opposite side? Correct me if I'm wrong, bilateral rads have been shown to have better survival benefit than unilateral.
  • Matt29
    Matt29 Member Posts: 62
    #5
    RogerRN43 said:

    Erbitux
    I would research and ask your doctors about it.
    I don't know if there are more studies to support or refute the following, but it is something I always remember when someone says they are HPV+ and Erbitux has been offered. From a thread on OCF last fall:

    "For example, HPV-positive cancers are driven by the expression of viral oncoproteins and are associated with lower epidermal growth factor receptor (EGFR) levels than are HPV-negative cancers.[17] This has potential implications with regard to cetuximab sensitivity in HPV-positive tumors. A retrospective study out of Memorial Sloan-Kettering recently suggested that HPV-positive patients treated with cetuximab plus radiation have worse outcomes than patients treated with cisplatin and radiation.[18] It is imperative that current and future studies address specific therapies for HPV-positive and HPV-negative cancers; such studies need to focus on tumor biology, treatment intensity, and curability, and they need to acknowledge the fact that patients with HPV-positive tumors tend to be young and otherwise healthy—with the result that failures in this setting can be catastrophic."

    http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=141578

    What I do know is Erbitux is less damaging than the platinum drugs.
    I have lost a bit of hearing and I have mild neuropathy in the soles of my feet from the large Cisplatin doses I received.
    Again, I can't tell you which is better, just what I've read and experienced.

    I'm wondering why you are not getting a smaller dose of rads to the opposite side? If you have lymphatic involvement, how can the docs be sure there is no microscopic activity on the opposite side? Correct me if I'm wrong, bilateral rads have been shown to have better survival benefit than unilateral.

    Erbitux
    Hey Roger the studying i have been doing is saying the same thing about Erbitux so i will go with tried and true Ciplastin which has been around forever i will also ask my rad doctor about the chances there could microscopic cells floating around that's a good question i need to ask them thank you for the info they also talked about doing an induction therapy which is Cisplastin,taxu,and 5-fu so i'm not sure what they will do to final result but i guess i'll know Monday.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Matt....I'm so glad you decided
    on MD Anderson....you are in good hands. Can't help on the Eribtux as I only know from what I've read on here. When do you start?
  • RogerRN43
    RogerRN43 Member Posts: 185
    #7
    Matt29 said:

    Erbitux
    Hey Roger the studying i have been doing is saying the same thing about Erbitux so i will go with tried and true Ciplastin which has been around forever i will also ask my rad doctor about the chances there could microscopic cells floating around that's a good question i need to ask them thank you for the info they also talked about doing an induction therapy which is Cisplastin,taxu,and 5-fu so i'm not sure what they will do to final result but i guess i'll know Monday.

    Cisplatin
    If I had to do it again, I would do 7 small weekly doses, not 3 big doses. It would have been easier on my system and I might not have developed those longterm side effects I mentioned.

    HPV+ SCC has a great cure rate, stay positive.
  • jtl
    jtl Member Posts: 456
    #8
    Matt29 said:

    Erbitux
    Hey Roger the studying i have been doing is saying the same thing about Erbitux so i will go with tried and true Ciplastin which has been around forever i will also ask my rad doctor about the chances there could microscopic cells floating around that's a good question i need to ask them thank you for the info they also talked about doing an induction therapy which is Cisplastin,taxu,and 5-fu so i'm not sure what they will do to final result but i guess i'll know Monday.

    I took Erbitux primarily
    I took Erbitux primarily because of what I read about the long term effects of the platinum drugs, by long term I am not talking about 1-3 years, much longer. At the time I did not even know I was hpv+. However it is a personal choice, in fact there may even be an entirely new way to treat P16+ scchn going forward. Remember that chemo or the biologicals do not treat the cancer at least for scc, they only make cells, and in the case of Cisplatin all cells more sensitive to radiation which is good and bad (bad in the case of good tissue). Maybe with newer methods of RT the use of "chemo" will not be necessary. I believe there is a trial going on currently that is addressing the HPV+/- issue and the use of Cisplation or Erbitux or both. The following is from an article I read:

    Cisplatin's toxic effects are a key point driving the debate. The longer it has been used, Ang said, the more apparent its late toxic effects have become. He cited the results of a recent study he worked on that analyzed the late toxic effects, such as severe difficulty in swallowing or feeding tube dependency. The study was led by Mitchell Machtay, M.D., at Case Western Reserve University School of Medicine in Cleveland, and published in 2008 in the Journal of Clinical Oncology. The researchers found that severe late toxic effects occurred in 43% of the 230 patients available for the analysis. The study was based on a group of 479 patients who received chemoradiation as part of several phase III trials begun as long as 15 years ago.

    “The problems with the late toxicities in chemo pave the way to go back to bench experiments with monoclonal antibodies and small molecules that inhibit EGFR,” said Jacques Bernier, M.D., Ph.D., at the Swiss Genolier Medical Network, in Geneva, who serves on the advisory board for Imclone and for Merck. After the data reported by Machtay, he said, it is clear that cetuximab and other EGFR inhibitors will be more widely investigated.

    I am at the age where something else, like heart disease, is likely to get me before another round of scchn but given the number of posts by younger people on here that are hpv+ I hope that some type of cure is found. It could very well be that hpv+ only needs a small amount of rt and chemo, if any. Proton therapy may be the new wave vs imrt. Even imrt is evolving. Just think 10 years from now a diagnostic test for scchn, locate and zap, like going to a dermatologist.
  • RogerRN43
    RogerRN43 Member Posts: 185
    #9
    jtl said:

    I took Erbitux primarily
    I took Erbitux primarily because of what I read about the long term effects of the platinum drugs, by long term I am not talking about 1-3 years, much longer. At the time I did not even know I was hpv+. However it is a personal choice, in fact there may even be an entirely new way to treat P16+ scchn going forward. Remember that chemo or the biologicals do not treat the cancer at least for scc, they only make cells, and in the case of Cisplatin all cells more sensitive to radiation which is good and bad (bad in the case of good tissue). Maybe with newer methods of RT the use of "chemo" will not be necessary. I believe there is a trial going on currently that is addressing the HPV+/- issue and the use of Cisplation or Erbitux or both. The following is from an article I read:

    Cisplatin's toxic effects are a key point driving the debate. The longer it has been used, Ang said, the more apparent its late toxic effects have become. He cited the results of a recent study he worked on that analyzed the late toxic effects, such as severe difficulty in swallowing or feeding tube dependency. The study was led by Mitchell Machtay, M.D., at Case Western Reserve University School of Medicine in Cleveland, and published in 2008 in the Journal of Clinical Oncology. The researchers found that severe late toxic effects occurred in 43% of the 230 patients available for the analysis. The study was based on a group of 479 patients who received chemoradiation as part of several phase III trials begun as long as 15 years ago.

    “The problems with the late toxicities in chemo pave the way to go back to bench experiments with monoclonal antibodies and small molecules that inhibit EGFR,” said Jacques Bernier, M.D., Ph.D., at the Swiss Genolier Medical Network, in Geneva, who serves on the advisory board for Imclone and for Merck. After the data reported by Machtay, he said, it is clear that cetuximab and other EGFR inhibitors will be more widely investigated.

    I am at the age where something else, like heart disease, is likely to get me before another round of scchn but given the number of posts by younger people on here that are hpv+ I hope that some type of cure is found. It could very well be that hpv+ only needs a small amount of rt and chemo, if any. Proton therapy may be the new wave vs imrt. Even imrt is evolving. Just think 10 years from now a diagnostic test for scchn, locate and zap, like going to a dermatologist.

    The study John is referring to:
    http://jco.ascopubs.org/content/26/21/3582.full

    A couple of things to consider:
    "Patients with severe toxicities were more likely to be older and/or to have larger T-stage and/or larynx/hypopharynx primary cancer"
    If you have HPV+ tonsil cancer, it may be a smaller T-stage and isolated in the oropharynx.

    And, "the late toxic effects, such as severe difficulty in swallowing or feeding tube dependency", I read as a result of initial severe mucositis, not something that eventually develops. From what I understand, late sequelae of chemo is more in the form of heart and kidney problems, still serious of course. On the other hand, there are a number of late radiation side effects associated with H&N patients I do worry about should I live that long... I'll just handle it as it comes.

    I do agree with John, it is something to consider. It is known people who get chemo do suffer greater incidences of their throat being thrashed. Thankfully, I did not develop mouth sores, and for whatever reason, some people don't.
  • jtl
    jtl Member Posts: 456
    #10
    RogerRN43 said:

    The study John is referring to:
    http://jco.ascopubs.org/content/26/21/3582.full

    A couple of things to consider:
    "Patients with severe toxicities were more likely to be older and/or to have larger T-stage and/or larynx/hypopharynx primary cancer"
    If you have HPV+ tonsil cancer, it may be a smaller T-stage and isolated in the oropharynx.

    And, "the late toxic effects, such as severe difficulty in swallowing or feeding tube dependency", I read as a result of initial severe mucositis, not something that eventually develops. From what I understand, late sequelae of chemo is more in the form of heart and kidney problems, still serious of course. On the other hand, there are a number of late radiation side effects associated with H&N patients I do worry about should I live that long... I'll just handle it as it comes.

    I do agree with John, it is something to consider. It is known people who get chemo do suffer greater incidences of their throat being thrashed. Thankfully, I did not develop mouth sores, and for whatever reason, some people don't.

    I only hope for the best
    I only hope for the best outcome for everyone regardless of their choice of treatment.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Seven Rad Sessions..
    Seven Rad Sessions, or seven weeks of rads sessions...

    Just curious if it is actually seven rads, most here have had seven weeks (35 days) of rads.

    I was one of those with the full scale treatment, nine weeks (three week cycles) of cisplatin,Taxotere and 5FU. The nthe seven weeks of daily amifostine injections, radiation and seven doeses of carboplatin each Monday of those weeks.

    I really didn't have much of anything as for reactions to the chemo...standard short term hair loss, taste loss, and blood counts all over the place.

    Nothing long term, other than a little dry mouth at night from the rads.

    Good CHoice on MD Anderson in Orlando.

    JG
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    Skiffin16 said:

    Seven Rad Sessions..
    Seven Rad Sessions, or seven weeks of rads sessions...

    Just curious if it is actually seven rads, most here have had seven weeks (35 days) of rads.

    I was one of those with the full scale treatment, nine weeks (three week cycles) of cisplatin,Taxotere and 5FU. The nthe seven weeks of daily amifostine injections, radiation and seven doeses of carboplatin each Monday of those weeks.

    I really didn't have much of anything as for reactions to the chemo...standard short term hair loss, taste loss, and blood counts all over the place.

    Nothing long term, other than a little dry mouth at night from the rads.

    Good CHoice on MD Anderson in Orlando.

    JG

    nothing long term
    except yer a little loopy:)
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    longtermsurvivor said:

    nothing long term
    except yer a little loopy:)

    Hannng On Loopy, Loopy Hang On....
    Oh I guess that was Sloopy.....

    JG
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #14
    Skiffin16 said:

    Hannng On Loopy, Loopy Hang On....
    Oh I guess that was Sloopy.....

    JG

    Hi Mat ...

    I am 3 months out from my last treatment. Stage III base of tongue with 1 lymph node involved.

    I had 35 radiation treatments and Erbitux. No surgery, no traditional chemo.

    I had a terrible reaction to Erbitux (but of course everybody is differnt) I had a large loading dose and then weekly doses after that for 6 weeks. I did have to stop one week due to "acne" reaction to Erbitux was soooo bad! I go for my first post treatment PET scan May 7 ...so no info on how my treatments went yet...but I am happy to share my Erbitux experience ...keep in mind too the doc said I was in the top % of those he has seen with such a bad reaction ...so I was not the norm.

    Best to you Matt ....I said a prayer for you before I typed my response to your question. Hang in there ...you can beat this buddy, you can!!


    Tim /Idaho

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