Response to chemotherapy

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longtermsurvivor
longtermsurvivor Member Posts: 1,842 Member
in Head and Neck Cancer #1
I want to share my recent chemotherapy story, as to me at least, the beneficial response is remarkable. I had my second throat cancer about a year ago, treated with radical surgery. My follow up PET was negative at six months, but things began to change pretty rapidly after that. I got a persistent post nasal discharge and had increasing swallowing problems about a month before my next follow up at 9 months. My PET scan and my exams were positive at 9 months, and i either had a new cancer in my soft palate and on the left sidewall of my pharynx, or I had a wierd reoccurance of last year's cancer, not in a location that was predicted.

I got rapidly symptomatic. Just about not able to swallow at all by the time chemo was started. Lots of post hasal discharge and bloody sputum. Then I got my first course of Taxotere/Carboplatin three weeks ago followed by Erbitux two weeks ago. I'm headed back tomorrow for my second full chemotherapy.

My response to chemo is unbelievable. Within two days of treatment, my postnasal drainage went away. Within two weeks I could not only swallow, I could eat well again. LOL, I've gained about 10 pounds in the last two weeks. Within the last week, I have no more bleeding.

All I can say is, WOW. Going to have to suffer through radiotherapy a second time. The first time for me was in 1998. I survived it then, and I'll survive it a second time. But I've gone from feeling like there was nothing they likely could do for me three weeks ago to, I really do have a chance today.

Keep the faith.

Pat

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
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    good to hear
    Thank you for sharing such encouraging news, Pat. I am glad you have had such quick, positive results.

    Make sure you keep us posted!
  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    Noellesmom said:

    good to hear
    Thank you for sharing such encouraging news, Pat. I am glad you have had such quick, positive results.

    Make sure you keep us posted!

    second radiation?
    Hi Pat, did you have robotic surgery this time and why are you eligible for more radiation? Is this a different form of Radiation as I thought we could only have it once?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
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    ratface said:

    second radiation?
    Hi Pat, did you have robotic surgery this time and why are you eligible for more radiation? Is this a different form of Radiation as I thought we could only have it once?

    So did I
    Because "the body remembers the insult forever", and that has been the prevailing attitude forever with XRT. However, when I got this problem, my ENT oncologist said "it is remarkable how quickly the radiation oncologists come off that position when confronted with a patient like you."

    I have had the full gamut or radiation. 7000 rads in 35 fractions through these huge portals back in 1998. I've suffered the consequences. Had to have hyperbaric Oxygen therapy, for instance, when I needed a molar extracted.

    But now, with the newer radiation technologies, creating narrower fields and sparing tissues surrounding the neoplasm, we can be irradiated a second time. I've met one other so far on this board who has already done this.

    The caveat is that it takes the special equipment to do this, and not every facility is able. I'm going to move 300 miles from where I live, for instance, to be able to accomplish this. And even the people treating me acknowledge they've only done a few dozen like me.


    I've not only had the original surgery and radiation, I've had extremely major surgery and reconstruction within the last year, so for these guys to throw me a lifeline by saying I could be treated with a reasonable expectation of cure this time around, was beyond my wildest hopes. I'm still adjusting to the infusion of hope as a matter of fact. I guess the message is to treat each problem as a separate thing as it comes up and not to conclude things are hopeless based on what was prevailing knowledge a few years ago.

    Heck, even Erbitux, which has been a godsend to ENT cancer patients, was a new thing to me.
  • buzz99
    buzz99 Member Posts: 404
    #5
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    Chemotherapy
    So glad to hear you had a dramatic response to the chemotherapy. Buzz had a radical neck and radiation 10 years ago for right tonsil cancer which had spread to two lymph nodes. Last August, he was diagnosed with right base of tongue cancer and he had Cisplatin, Taxotere, 5fu and Erbutux with radiation. This was his second radiation treatment. We were told that to do a second treatment with radiation to the same area requires "breaking a few rules." You sound so positive and are quite an inspiration. Karen
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #6
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    longtermsurvivor said:

    So did I
    Because "the body remembers the insult forever", and that has been the prevailing attitude forever with XRT. However, when I got this problem, my ENT oncologist said "it is remarkable how quickly the radiation oncologists come off that position when confronted with a patient like you."

    I have had the full gamut or radiation. 7000 rads in 35 fractions through these huge portals back in 1998. I've suffered the consequences. Had to have hyperbaric Oxygen therapy, for instance, when I needed a molar extracted.

    But now, with the newer radiation technologies, creating narrower fields and sparing tissues surrounding the neoplasm, we can be irradiated a second time. I've met one other so far on this board who has already done this.

    The caveat is that it takes the special equipment to do this, and not every facility is able. I'm going to move 300 miles from where I live, for instance, to be able to accomplish this. And even the people treating me acknowledge they've only done a few dozen like me.


    I've not only had the original surgery and radiation, I've had extremely major surgery and reconstruction within the last year, so for these guys to throw me a lifeline by saying I could be treated with a reasonable expectation of cure this time around, was beyond my wildest hopes. I'm still adjusting to the infusion of hope as a matter of fact. I guess the message is to treat each problem as a separate thing as it comes up and not to conclude things are hopeless based on what was prevailing knowledge a few years ago.

    Heck, even Erbitux, which has been a godsend to ENT cancer patients, was a new thing to me.

    Go Man Go!
    After reading your post it sure sounds that for many of us who wonder if it comes back a 2,3 maybe 4th time there is more than just surgery. Where are you going for your treatments? Where do you live now? Will you keep the same team of doctor's for your 3rd War against Cancer.

    Is the treatment for radiation being done on a thomotherapy machine?

    Love your Attitude.

    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
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    fisrpotpe said:

    Go Man Go!
    After reading your post it sure sounds that for many of us who wonder if it comes back a 2,3 maybe 4th time there is more than just surgery. Where are you going for your treatments? Where do you live now? Will you keep the same team of doctor's for your 3rd War against Cancer.

    Is the treatment for radiation being done on a thomotherapy machine?

    Love your Attitude.

    John

    I chose pretty well the first time
    in 1998 I lived in extreme western Missouri. When the local ENT told me his first step would be to have my dentist do a full mouth extraction, I decided it was time to travel a bit for better advice. I went first to St Louis, and ran into a guy at St Louis University who did ENT Oncology only. Good choice on my part. He did that surgery and directed my radiation and follow up then, and I've seen him ever since. I've been very happy with my care.

    I now am treated at St John's Mercy in St Louis, where this guy relocated. They are a big enough place to have all the bells and whistles. I now live in Rogers Arkansas, so the drive is about 360 miles one way. I'll be moving to St Louis for my radiation.

    I will have tomotherapy. These guys say that is essential for retreating ENT cancer patients, in order to spare the tissues around the tumor.

    My last surgery was pretty rough. I found my cancer early, they thought, and I had conservative surgery to remove it. Unfortunately, that surgery didn't get enough margin, so two weeks later I had radical surgery, complete with a tracheostomy and a feeding tube for several weeks. Tough to heal up from, and left me with some problems opening my mouth, chewing and swallowing.

    Not really looking forward to radiation, but admit I'm happy I'm not having another major surgery so soon!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
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    Hi Pat
    Wow that is great to hear how well your body is doing with the chemo, I hope you do as well with the rad treatment

    Hondo
  • Hal61
    Hal61 Member Posts: 655
    #9
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    Noellesmom said:

    good to hear
    Thank you for sharing such encouraging news, Pat. I am glad you have had such quick, positive results.

    Make sure you keep us posted!

    bridging the gap
    Hi Pat, thanks for finding this board and posting. Your explanations of what has happened to you, and what is being done now to keep you healthy are very articulate and helpful to all of us. You've had a long road, and it sounds like advanced treatments are catching up with your effort.

    best, Hal
  • robinleigh
    robinleigh Member Posts: 297
    #10
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    an inspiration
    You really are an inspiration and I will be pulling for you through this battle. My husband is fighting a recurrence, as well and he seems to fare quite well on chemo but so far, they have not found one that is effective for his metastasis. Next plan is a clinical trial so we are keeping up the fight. Your experience is an encouragement and I wish you all the best. Robin
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
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    robinleigh said:

    an inspiration
    You really are an inspiration and I will be pulling for you through this battle. My husband is fighting a recurrence, as well and he seems to fare quite well on chemo but so far, they have not found one that is effective for his metastasis. Next plan is a clinical trial so we are keeping up the fight. Your experience is an encouragement and I wish you all the best. Robin

    Hi Robin
    My best to you and your husband. I'm very interested in your husband's progress and will see what I can learn from you regarding clinical trials. It is, of course, very possible I could need to go down that road too, sooner or later.

    Thank you for your kind wishes.
  • robinleigh
    robinleigh Member Posts: 297
    #12
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    longtermsurvivor said:

    Hi Robin
    My best to you and your husband. I'm very interested in your husband's progress and will see what I can learn from you regarding clinical trials. It is, of course, very possible I could need to go down that road too, sooner or later.

    Thank you for your kind wishes.

    Feel free
    Anytime you want our experience finding clinical trials I am more than happy to share. Hopefully, your treatment will be successful and a search won't be necessary! Tough stuff this cancer but, keeping hope!

    You can email me if you ever want details about trial searches.

    My best,
    Robin
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
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    robinleigh said:

    Feel free
    Anytime you want our experience finding clinical trials I am more than happy to share. Hopefully, your treatment will be successful and a search won't be necessary! Tough stuff this cancer but, keeping hope!

    You can email me if you ever want details about trial searches.

    My best,
    Robin

    Great to be here
    That is what makes CSN one of the best places to be for help and support; we can share our experience with others to help them along the way. I always say it feel just like family but even closers

    Hondo
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #14
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    Pat, My wife Connie had a
    Pat, My wife Connie had a dramatic response to chemo also. She started chemo last Nov. and although she had a tougher time with radiation she has done well. I remember how relieved we were when she had such a rapid response. It is a very good sign indeed and we are hoping you do well also. Your friends, Homer & Connie
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #15
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    connieprice1 said:

    Pat, My wife Connie had a
    Pat, My wife Connie had a dramatic response to chemo also. She started chemo last Nov. and although she had a tougher time with radiation she has done well. I remember how relieved we were when she had such a rapid response. It is a very good sign indeed and we are hoping you do well also. Your friends, Homer & Connie

    Thank you
    Just taking things one day at a time. Had my second chemotherapy three days ago. Not as sick this time around. I can even eat. Funny how much eating gets discussed on this site:)
  • Pam M
    Pam M Member Posts: 2,196
    #16
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    Wonderful
    Your response to chemo is amazing! Glad to hear it - hope you keep bringing us great news.

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