Got some good news today

jcortney
jcortney Member Posts: 503
in Head and Neck Cancer #1
Having something positive to say is so rare for me that I thought i'd share. As an update I'm SQT1 N2C and finished my third round of Induction Chemo (may you never have to go through it). I went to see my ENT today for him to take a look before we begin Chemo/Rads. After scoping me out and a thorough exam he could find no visible evidence of my tumor or any lymph node that was impaired. He told me that this was the absolute best result he could have envisioned and that it was important because reaction to the Induction is a strong indicator of how I will react to the rest of the treatment.

I caught him on a good day as he was almost through and spent a good deal of time with me discussing my disease. Now understand, he's primarily a cutter but a really bright guy and really up on this (HPV+) disease. He told me about some studies going in in Pittsburg (seems the mecca for robotic throat surgery and a top H&N program) that is trying to find out what the proper (read, effective) amount of RADs are. He said it was looking favorable for 25 but the data is still not conclusive. I'm scheduled for 35 and I pressed him on his opinion on shortening it down. He told me that if it was him that was going through it he wouldn't risk 25 based on the data that is now available but he would not go over 30 because, his words "those last five are a b#tch". He also told me about one of his patients that had Induction and Chemo (Erbitux) and refused RADs. He said he's cured (been five years) but that was like putting a loaded gun to your head and spinning the chamber. I'm not that brave but I think I am going to fight for less RADs.

Have a safe Thanksgiving everyone and remember, your friends and your family are all you really have.

Joe Cortney
Dallas, TX

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I think there are several people on here
    who did the 30 rads...I honestly can't remember if the last 5 were any "bitchier" than the rest of them...LOL. I do know tho, had they told me I was going to be ending a little earlier, I would have loved it.

    Congrats on your great check up!! It's a great feeling to find out that what you've been putting yourself thru is working!!

    p
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    good news
    Hi Joe,

    I think the turkey got 35, looks cooked to me.

    My ENT was a good cutter too and proved it to me. He also said that he thought he got it all, but to be sure…………..radiation and Erbitux. Do 25 guarantee good taste buds? If you go for less you might miss out on all the “no taste bud” hoopla, but then again it is not fun hoopla. It may come down to the exact location of the cancer in relationship to the proximity to your taste buds, because the cancer they are going to zap and it is the proximity zap you have to be careful of.

    Best of luck, the doctors will not let you make a incorrect choice, guaranteed.

    Now, while there is still time (I hope you can still taste) enjoy your Thanksgiving meal.

    Best,

    Matt
  • jcortney
    jcortney Member Posts: 503
    #4
    CivilMatt said:

    good news
    Hi Joe,

    I think the turkey got 35, looks cooked to me.

    My ENT was a good cutter too and proved it to me. He also said that he thought he got it all, but to be sure…………..radiation and Erbitux. Do 25 guarantee good taste buds? If you go for less you might miss out on all the “no taste bud” hoopla, but then again it is not fun hoopla. It may come down to the exact location of the cancer in relationship to the proximity to your taste buds, because the cancer they are going to zap and it is the proximity zap you have to be careful of.

    Best of luck, the doctors will not let you make a incorrect choice, guaranteed.

    Now, while there is still time (I hope you can still taste) enjoy your Thanksgiving meal.

    Best,

    Matt

    Still tastin'
    Matt,

    Thanks for the comments. Since I haven't started the RADs the buds are working, problem is the rest of the body is still leaching Cisplastin. I got some solid food down today so I'm hoping that by Thursday everything will work. I'm frying up a really nice Turkey and hoping for a great meal before it all goes away :)

    Thanks again, and I remember you saying the buds are coming back so I hope it works for you too on Thursday.


    Joe
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #5
    Great News
    Always glad when someone in our little club has good news. Rick.
  • Pam M
    Pam M Member Posts: 2,196
    #6
    Sounds Great
    You know your doc's not gonna come out with the "best result" line if he didn't believe it. Very good news.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Same Same...Almost...
    Back in 2009 I was STGIII Tonsils, and a lymphnode, HPV+...

    I had the tonsils removed, then the nine weeks of induction chemo (Cisplatin, Taxotere and 5FU)...

    Like you, the tumor (lymphnode), completely dissolved away.

    My ENT advised me the same as you concerning the next seven weeks of concurrent.

    Though back then the recent studies had not taken place, and a reduced Tx plan was not in the mix.

    But like your situation, I was adviced to tough out the next seven weeks...pro-active, and more bang for the buck.

    He too has had patients that didn't go through the concurrent or rads, and were surviving, but why take the risk.

    I guess it's all a gamble, but might as well stack the odds in your favor when you can.

    Best,
    John
  • jcortney
    jcortney Member Posts: 503
    #8
    Skiffin16 said:

    Same Same...Almost...
    Back in 2009 I was STGIII Tonsils, and a lymphnode, HPV+...

    I had the tonsils removed, then the nine weeks of induction chemo (Cisplatin, Taxotere and 5FU)...

    Like you, the tumor (lymphnode), completely dissolved away.

    My ENT advised me the same as you concerning the next seven weeks of concurrent.

    Though back then the recent studies had not taken place, and a reduced Tx plan was not in the mix.

    But like your situation, I was adviced to tough out the next seven weeks...pro-active, and more bang for the buck.

    He too has had patients that didn't go through the concurrent or rads, and were surviving, but why take the risk.

    I guess it's all a gamble, but might as well stack the odds in your favor when you can.

    Best,
    John

    Agree, but
    The more my wife and I talk about it and read articles on the trials I'm pretty firm on shortening to 30 RADs. I think it's a good compromise and, from my perspective, a reasonable risk and a moderation of the morbidity that 35 RADs could and does cause.

    Be safe over the holiday.


    Joe
  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #9
    jcortney said:

    Agree, but
    The more my wife and I talk about it and read articles on the trials I'm pretty firm on shortening to 30 RADs. I think it's a good compromise and, from my perspective, a reasonable risk and a moderation of the morbidity that 35 RADs could and does cause.

    Be safe over the holiday.


    Joe

    Good news I like it
    I am so happy to hear good news. Sounds like you have a good plan to have a nice Thanksgiving and then start the next phase of your treatment. I am so happy your body responded so well to the induction chemo. That is awesome.
  • cureitall66
    cureitall66 Member Posts: 913
    #10
    Glad to hear it....
    That's great news. Thanks for sharing this with us. Hope you enjoy your Thanksgiving dinner! No way for us to push a crushed drumstick or breast through the PEG tube, so forumula it is this year! We are just finishing our last week up here...rough ride, but glad it's almost done.

    Happy Thanksgiving to you and your family,

    ~C
  • luvofmylif
    luvofmylif Member Posts: 344
    #11
    cureitall66 said:

    Glad to hear it....
    That's great news. Thanks for sharing this with us. Hope you enjoy your Thanksgiving dinner! No way for us to push a crushed drumstick or breast through the PEG tube, so forumula it is this year! We are just finishing our last week up here...rough ride, but glad it's almost done.

    Happy Thanksgiving to you and your family,

    ~C

    Good luck on your journey.
    Good luck on your journey. We just completed 30 rads and 2 chemo. You can do it!
  • jcortney
    jcortney Member Posts: 503
    #12
    luvofmylif said:

    Good luck on your journey.
    Good luck on your journey. We just completed 30 rads and 2 chemo. You can do it!

    Thanks all
    I thought I had this planned out well, Thanksgiving that is. But, it seems that my body isn't going to cooperate. Last round I lost the ability to eat anything that even resembled meat for a few days and it seems those days are back. The good news is we are going to a friends house (I'll be frying a turkey) with a whole bunch of people so there will be ample side dishes for me to "buffet" . Thanks to Phrannie for the early suggestion of buffet's when you can't seem to eat anything.

    God Bless you all, we all have a lot to be thankful for.


    Joe Cortney
    Dallas, TX
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #13
    jcortney said:

    Thanks all
    I thought I had this planned out well, Thanksgiving that is. But, it seems that my body isn't going to cooperate. Last round I lost the ability to eat anything that even resembled meat for a few days and it seems those days are back. The good news is we are going to a friends house (I'll be frying a turkey) with a whole bunch of people so there will be ample side dishes for me to "buffet" . Thanks to Phrannie for the early suggestion of buffet's when you can't seem to eat anything.

    God Bless you all, we all have a lot to be thankful for.


    Joe Cortney
    Dallas, TX

    If I may ask a questions...I see where you are taking the Cisplatin ...do you mind sharing exaclty what else (if any) your chemo drugs are?


    Have a great Thanksgiving and enjoy that "yard bird" as we call it in the South. :)

    Best,

    Tim
  • jcortney
    jcortney Member Posts: 503
    #14
    Tim6003 said:

    If I may ask a questions...I see where you are taking the Cisplatin ...do you mind sharing exaclty what else (if any) your chemo drugs are?


    Have a great Thanksgiving and enjoy that "yard bird" as we call it in the South. :)

    Best,

    Tim

    Sure
    I had three rounds of Cisplatin, Taxotere and the dreaded 4FU four day pump followed by a weekly shot of Neulasta. The IV drugs were administered on Monday and the pump removed on Friday. Then 14 days of rest and repeat.

    J.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #15
    jcortney said:

    Sure
    I had three rounds of Cisplatin, Taxotere and the dreaded 4FU four day pump followed by a weekly shot of Neulasta. The IV drugs were administered on Monday and the pump removed on Friday. Then 14 days of rest and repeat.

    J.

    chemo chat
    Joe,

    Dreaded 4FU is that like the wonderful 5FU? Tim, I had Erbitux, don’t you know?

    Matt
  • jcortney
    jcortney Member Posts: 503
    #16
    CivilMatt said:

    chemo chat
    Joe,

    Dreaded 4FU is that like the wonderful 5FU? Tim, I had Erbitux, don’t you know?

    Matt

    My Bad
    5FU

    Erbitux next for me too.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #17
    jcortney said:

    My Bad
    5FU

    Erbitux next for me too.

    Exactly Same...
    I had exactly the same regime as your first thee cycles...Cisplatin and Taxotere on Monday, hooked to the 5FU pump through Thursday, and off Friday morning.

    Then the Neulasta injection....

    With the Neulasta, a few days after the injection, did you feel flu like? It hit me hard the first time, not so much the next two.

    It felt like all of my major bones ached and hurt, lower back felt like it went out.

    Anyways....

    Erbitux wasn't used as much at that time 2009, my seven week concurrent was weekly Carboplatin and the daily rads.

    I did have Amifostine injections in my stomach every day just before the rads though...fun, fun.

    Best,
    John

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