60 days post treatment

Cleve
Cleve Member Posts: 2
in Head and Neck Cancer #1
Hi everyone.

I entered this journey with Tonsil cancer, having spread to lymph nodes (StageIV) in Aug. '11

I had Chemo and radiation together. 3X Chemo and 40x Radiation

I am now 60 days POST treatment.My last Radiation was 11/11/11
My last Chemo was 10/31/11

I feel good. I really do
Strength is returning.I work full time as an IT manager and am performing at 100 percent
I am almost back to eating 100 percent, except that I lost my bottom teeth prior to radiation so eating is difficulT.

Attitude is EVERYTHING

TRY TRY TRY
Then TRY again
I think I Can, I Think I can

be the little train.....

My biggest issue is waiting for the follow up PET scan.
This is driving me CRAZY waiting.

I have no patience

I am stressing BIG TIME

I realize I was given life.
No PEG tube
No Burns
Little weight loss
I worked thru it all

But the waiting is the worst.......

Please help

I feel like the raven is knock knock knocking on my chamber door.

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Wow
    My doc said I was a rock star for withstanding treatment so well. Sounds like your body did an AMAZING job - good to hear.

    I'm with you on the waiting - it'll make you crazy. Do you know when you'll get your first scans?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Welcome Cleve...
    Similar Dx and Tx..also no PEG an very little discomfort. I did lose most taste and saliva, but now at nearly 3 years post treatment, I have nearly 100% of both of those also.

    STGIII SCC Tonsils and a lymphnode, HPV+ sixteen weeks of four different chemos, seven of those with concurrent chemo/rads.

    Yes, most of us have anxiety waiting for the scans.

    Best,
    John
  • jtl
    jtl Member Posts: 456
    #4
    Skiffin16 said:

    Welcome Cleve...
    Similar Dx and Tx..also no PEG an very little discomfort. I did lose most taste and saliva, but now at nearly 3 years post treatment, I have nearly 100% of both of those also.

    STGIII SCC Tonsils and a lymphnode, HPV+ sixteen weeks of four different chemos, seven of those with concurrent chemo/rads.

    Yes, most of us have anxiety waiting for the scans.

    Best,
    John

    HPV
    John, I recently did a search on HPV and scchn and it appears to me that since HPV has been determined to be a major cause that there is a lot more interest in our cancers. I did not have tonsil involvement but I was curious if having your tonsils removed following a diagnosis of ssc in another location was advised. Apparently it is not considered preventive.

    A few studies are focused on using modified (less rads) treatments and one study is a head to head comparing cisplatin and Eurbitux and 5 year survival rates. I did read that 3yr survival with HPV+ is 82% vs 57% for HPV- which I think is similar to other reports. I for one am glad to see an increased interest even though it comes as a result of more scchn being reported.

    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    Dude
    I completely understand your morbid ruminations. However, we get through the follow-up just like we fall asleep at night. Denial is a defense mechanism. So is distraction. Myself, I've had better luck than some with this disease, worse luck than others. But I never sweat the upcoming follow-up exams nor scans. That's called worry. And worry is the ONLY invalid emotion. Fighting the same battle over and over, before it has to be fought. Personally, I've got more living to do before I die.

    Best to you.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    jtl said:

    HPV
    John, I recently did a search on HPV and scchn and it appears to me that since HPV has been determined to be a major cause that there is a lot more interest in our cancers. I did not have tonsil involvement but I was curious if having your tonsils removed following a diagnosis of ssc in another location was advised. Apparently it is not considered preventive.

    A few studies are focused on using modified (less rads) treatments and one study is a head to head comparing cisplatin and Eurbitux and 5 year survival rates. I did read that 3yr survival with HPV+ is 82% vs 57% for HPV- which I think is similar to other reports. I for one am glad to see an increased interest even though it comes as a result of more scchn being reported.

    John

    Noticed More...



    I personally think that HPV has probably been a factor for a long time, it's just becoming more noticed due to cases such as Michael Douglas.

    As you know..., it's the "sinners cancer", LOL....

    My tonsils were the primary site, it's reasonable to me they would come out. As for the tumor (secondary), it was close to the carotid, so they opted to see how it would respond to the chemo and rads, leaving dissection as a last result. Hoping that the chemo or rads would dissolve it or at least shrink it...it dissolved away after the nine week sessions of cisplatin, taxotere and 5FU...CT confirmed it prior the additional seven weeks of concurrent weekly carboplatin and 35 daily rads.

    Could have I survived and be cured without the additional seven weeks...not sure.

    Bu my ENT advised me to go for it since my body could handle it, and I did.

    Statistics are all over the place as far as I'm concerned...just too many variables.

    I'm shooting for much longer survival than any of the statistics. I'm in it for the long haul.

    Best,
    John
  • jtl
    jtl Member Posts: 456
    #7
    Skiffin16 said:

    Noticed More...



    I personally think that HPV has probably been a factor for a long time, it's just becoming more noticed due to cases such as Michael Douglas.

    As you know..., it's the "sinners cancer", LOL....

    My tonsils were the primary site, it's reasonable to me they would come out. As for the tumor (secondary), it was close to the carotid, so they opted to see how it would respond to the chemo and rads, leaving dissection as a last result. Hoping that the chemo or rads would dissolve it or at least shrink it...it dissolved away after the nine week sessions of cisplatin, taxotere and 5FU...CT confirmed it prior the additional seven weeks of concurrent weekly carboplatin and 35 daily rads.

    Could have I survived and be cured without the additional seven weeks...not sure.

    Bu my ENT advised me to go for it since my body could handle it, and I did.

    Statistics are all over the place as far as I'm concerned...just too many variables.

    I'm shooting for much longer survival than any of the statistics. I'm in it for the long haul.

    Best,
    John

    Statistics
    They are amazingly accurate in the general sense but no one can predict any one individual's outcome. If I flip a coin 9 times and it comes up heads every time what are the odds of it being a head again on the next flip......50/50.

    I found it interesting that there are well over 100 variations of HPV and it is estimated that 75% of us have have or have had it (there are those darn stats again LOL). Most of the time it just goes away because our immune system takes care of us. Only a very few are dangerous, 16 and 18 being two of them.

    Sinners cancer? Who me? I was just having fun! Told my Onc that it was just a sign of a mis-spent youth he sort of agreed. He has two young daughter and is seriously considering getting them vacinated. Suppose it is hard for a father to think about things like that.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #8
    Believe
    I use the follow ups and scans as a confirmation of my belief that my cancer is gone.

    Believe all will be fine and it will be fine, believe your cancer is gone and your scans and follow up will prove and confirm.

    Believing goes along with Positive Mental Attitude!

    john
  • CajunEagle
    CajunEagle Member Posts: 408
    #9
    jtl said:

    Statistics
    They are amazingly accurate in the general sense but no one can predict any one individual's outcome. If I flip a coin 9 times and it comes up heads every time what are the odds of it being a head again on the next flip......50/50.

    I found it interesting that there are well over 100 variations of HPV and it is estimated that 75% of us have have or have had it (there are those darn stats again LOL). Most of the time it just goes away because our immune system takes care of us. Only a very few are dangerous, 16 and 18 being two of them.

    Sinners cancer? Who me? I was just having fun! Told my Onc that it was just a sign of a mis-spent youth he sort of agreed. He has two young daughter and is seriously considering getting them vacinated. Suppose it is hard for a father to think about things like that.

    Tonsil
    Yea, HPV 16 got a hold of my left Tonsil, and spread to my Carotid artery in January of 09, where it caused "black-out periods" and then was spreading to my spine. They named it stage 4, and did not carry out any surgery or dissection. And just like John, they just hoped that the combination of Cisplatnin....Taxtera, and 5FU......along with 35 zaps of radiation would do the trick. And yes, about half way through the treatment the tumor had dissolved away. My chemo oncologist (who attended my high school's huge rival) said he "figured I'd have a wimpy tumor" and laughingly informed me that "Na-na Na-na Boo-boo. You gotta finish up the rest of the treatment." Which was fine with me. I now only go to him on an annual basis, and the other day I gave him a bag of rocks that I would have in my pockets prior to getting on the scales during treatment. I got him back.

    Larry
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    fisrpotpe said:

    Believe
    I use the follow ups and scans as a confirmation of my belief that my cancer is gone.

    Believe all will be fine and it will be fine, believe your cancer is gone and your scans and follow up will prove and confirm.

    Believing goes along with Positive Mental Attitude!

    john

    You Know It
    Well said JVG - John2...LOL
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    CajunEagle said:

    Tonsil
    Yea, HPV 16 got a hold of my left Tonsil, and spread to my Carotid artery in January of 09, where it caused "black-out periods" and then was spreading to my spine. They named it stage 4, and did not carry out any surgery or dissection. And just like John, they just hoped that the combination of Cisplatnin....Taxtera, and 5FU......along with 35 zaps of radiation would do the trick. And yes, about half way through the treatment the tumor had dissolved away. My chemo oncologist (who attended my high school's huge rival) said he "figured I'd have a wimpy tumor" and laughingly informed me that "Na-na Na-na Boo-boo. You gotta finish up the rest of the treatment." Which was fine with me. I now only go to him on an annual basis, and the other day I gave him a bag of rocks that I would have in my pockets prior to getting on the scales during treatment. I got him back.

    Larry

    Port Flushing
    That reminds me, I see my onco in a few weeks...While there I'm heading to my nurses for them to flush my port...you know the one my onco had stuck in my chest for 2 1/2 years before letting me get rid of it finally a few months ago.

    Anyways, when they go to flush it, I'll hand it to them, LOL....

    JG
  • Larrykins
    Larrykins Member Posts: 38 Member
    #12
    Skiffin16 said:

    Port Flushing
    That reminds me, I see my onco in a few weeks...While there I'm heading to my nurses for them to flush my port...you know the one my onco had stuck in my chest for 2 1/2 years before letting me get rid of it finally a few months ago.

    Anyways, when they go to flush it, I'll hand it to them, LOL....

    JG

    Port
    Hi there,

    It really worried me that they told me to leave the port in. I mean they say be positive, but better leave it in. Oxymoronic no?

    Is 2 1/2years the average? Is it impossible to put another one in if you have it taken out? (not that I would like to repeat that particular wide-awake operation)

    I'm not whining about having it in but would feel a bit more confident about taking it out as an affirmation that my cancer wont come back. Besides when my kids accidentally kick it hard it makes my stomach flutter!

    Larry
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Larrykins said:

    Port
    Hi there,

    It really worried me that they told me to leave the port in. I mean they say be positive, but better leave it in. Oxymoronic no?

    Is 2 1/2years the average? Is it impossible to put another one in if you have it taken out? (not that I would like to repeat that particular wide-awake operation)

    I'm not whining about having it in but would feel a bit more confident about taking it out as an affirmation that my cancer wont come back. Besides when my kids accidentally kick it hard it makes my stomach flutter!

    Larry

    Deported....
    Larry...

    I don't know of anyone on here that had their port still in after 2 1'2 years other than me....

    My chemo MD wanted it in for two years for the reasons you stated. Though my ENT pretty much considered you cured after a year.

    My hard headed chocolate lab sisters (Kali and Jazzy) would push their "boneheads" as I call them into it sometimes when being affectionate...and yes..damn that would hurt.

    I actually lucked out..again, for whatever reason, my surgeon liked to remove them as an admitted patient..big bucks, an entire day shot.

    I decided to wait until my max out of pocket was met later in the year.

    By the time I got around to scheduling it, he started doing them like everyone on here MD has...20 minute outpatient procedure in the office.

    In and out, easy peasy.....

    JG
  • Larrykins
    Larrykins Member Posts: 38 Member
    #14
    Skiffin16 said:

    Deported....
    Larry...

    I don't know of anyone on here that had their port still in after 2 1'2 years other than me....

    My chemo MD wanted it in for two years for the reasons you stated. Though my ENT pretty much considered you cured after a year.

    My hard headed chocolate lab sisters (Kali and Jazzy) would push their "boneheads" as I call them into it sometimes when being affectionate...and yes..damn that would hurt.

    I actually lucked out..again, for whatever reason, my surgeon liked to remove them as an admitted patient..big bucks, an entire day shot.

    I decided to wait until my max out of pocket was met later in the year.

    By the time I got around to scheduling it, he started doing them like everyone on here MD has...20 minute outpatient procedure in the office.

    In and out, easy peasy.....

    JG

    Silicone job
    Thanks. I'll give it a year. Or get one on the other side to match.

    It's amazing how loved ones are able to find where it hurts unconsciously.

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