Bad Day

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DX: stage IV HPV 16+ HNSCC of the trachea/thyroid/lymph/lung. Primary unknown.

We met with the local oncologist today for the first time. The 1st PET results from yesterday weren't great. They found 3-4 nodules in his lungs the size of "small grapes" that were not on the CR 3 weeks ago. The oncologist said this meant that it was chemo time and had him admitted. We had an appt at MD Anderson Monday at 9:30am, but opted to start chemo here. 

He gets his port at 10am tomorrow and starts 5FU, celixubam, and cesplain (sorry for my spelling). 

He is really feeling devastated and says he can't take any more bad news. I'm trying to be positive, obviously and strongly suggesting he join me.

I've read data from dozens of studies and some give me lots of hope while others do not. I know that it's pointless beacuse it's based on individuals and how they individually respond to treatment. Trying to cope I guess.

How does this work now? The chemo shrinks the disease off the lungs and in the HN and then they radiate and possibly cut out what's left and throw in more chemo for good measure? Very lost right now.

Comments

  • ahollie
    ahollie Member Posts: 84
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    everyone different

    everyones different and everyones treatments are the same but different ive found..it is very overwhleimg at first and i remember thinking how will we ever get thru all of this...but you do..one foot in front of the other and one step at a time..just keep reminding yourself..at least he is able to get treatment...it is very scarey and our favorite saying everyday is...well..we made it thru one more day...over one more hurdle..you can do this..stay strong..lifting you up in prayer...where are you getting treatment?

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
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    ahollie said:

    everyone different

    everyones different and everyones treatments are the same but different ive found..it is very overwhleimg at first and i remember thinking how will we ever get thru all of this...but you do..one foot in front of the other and one step at a time..just keep reminding yourself..at least he is able to get treatment...it is very scarey and our favorite saying everyday is...well..we made it thru one more day...over one more hurdle..you can do this..stay strong..lifting you up in prayer...where are you getting treatment?

    Where

    Seton Main, Austin, TX

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Audrey said it all

    for treatment of this disease.  One step at a time, one foot in front of the other.......stay in this day, tomorrow will be here soon enough.  Trust in your Drs.  Get the chemo started where you are, but try and keep your plans with MDA......a few days isn't going to change much, and he'll be feeling better a couple of days after the chemo.

    I'm sure he's feeling devasted and depressed after today, but that can pass.....staying positive fights cancer, I swear it must.....One big piece of advice I received when I first got here was to stay off the internet......I did, and I was a much happier (and more positive) person for following that tidbit.  What you're reading isn't necessarily correct or up to date.....

    Sending POSITIVE thoughts to both of you, and prayers too Smile 

    p

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    better days

    LumpinmyThroat,

    As said, one day at a time.  The devastated feelings will lessen as you both get in your routine.   I could not believe what was happening to me either, but it was.

    The chemo can be very disruptive to the cancer’s growth and the rads destroy it.  The planning is very important so they can eliminate it with least amount of harm.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    lump, i'm saying prayers for

    lump, i'm saying prayers for both of you.

    God bless you,

    dj

  • Laralyn
    Laralyn Member Posts: 532
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    A quick word about statistics

    A quick word about statistics and studies that try to predict outcome: I know it's hard to not read them, but try not to or at least don't let what you read rule your lives. If you read something that says there is only a 10% chance of survival, he may be in that 10% and you have no way of knowing. To be brutally honest, it may say he has a 90% survival chance and yet he could still be in the 10% that doesn't respond to the treatment. You never know which percentile you're in until it either happens or doesn't happen. Other than looking into comparative effectiveness of different treatment plans and following your doctors' orders, there is nothing you can do to change which percentile you're in. So try to let go.

    Hang in there, and don't be afraid to get a second opinion or ask your doctor questions. We're here for both of you!

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    your questions

    About particulars of the treatment are best asked of the physician because, as you have said, we are all individuals and treatment plans are individualized in some respects.

    Statistics are just that and it depends on your outlook (and on this ride, your outlook can be up and down like the proverbial roller coaster) so read them if you choose but do so knowing they are neither right nor wrong - they are just statistics and all factors are never accounted for even in the best of studies.

    As Phrannie and others have said, it truly is a one day at a time journey.

  • corleone
    corleone Member Posts: 312 Member
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    How does this work

    Yes, pretty much it.

    The first stage is a combination of chemo (5-FU + Cisplatin) and targeted therapy (Cetuximab). This would destroy the metastatic cancer cells in the body, wherever they are. The second phase would be concurrent chemo and radiation (done concomitantly, they potentiate each other), that would destroy the primary tumor and the remaining tumor cells in the head and neck area.

     

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
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    It Means So Much

    It means the world to me to be able to come on here and talk to you all. 

    Hopefully today is better.

    He was taken to surgery around 10am to have his port put in and is not back from recovery yet.

    As for MD Anderson, I'm going to call Monday and reschedule his appt for later in the week. We're going come hell or high water.

    Love to you all.

    ❤️beth

     

  • donfoo
    donfoo Member Posts: 1,773 Member
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    more sour than sweet

    DX: stage IV HPV 16+ HNSCC of the trachea/thyroid/lymph/lung. Primary unknown.

    First, welcome to CSN. One of the truly best places to get first hand commentary from cancer patients and survivors.

    You did not offer the full diagnosis. Please add the TNM to the staging. Based on what you describe, this is a case with distant mets. If so it would be staged as M1 thus stage 4c.

    My treatment included 3 rounds of induction TPF chemo at 3 week intervals. Cisplatin and Taxotere and 5Fu are given on day one. A portable pack supplies 5FU for the following four days. It is removed on the 5th day. Two weeks off and start cycle again. The goal is to shrink the cancer as much as possible to make the following radiation fields smaller. This chemo does NOT kill cancer.

    For that matter only rads and surgery kill cancer. Chemo can be used to "mop up" microsized cancer cells and kill them but any detectable cancer is NOT killed by chemo.

    I'm no medical profession so please stay focused and ask the hard questions.

    Is this a case of distant mets?

    If so, are the treatment plans curative or pallative?

    Is the chemo going to cure and kill cancer or is it going to manage and minimze the cancer and spread of the disease?

    What happens next? Given known cancer is located in four areas, how will those areas be treated post induction TPF chemo?

     

    As to all stats. Already stated, if there is a 1% survival chance you have hope. Beyond that there is no way to know if based on your unique factors which group to which you belong. Just take one day at a time and use every minute to get as informed as you want. There is never enough time to get as informed as you need. Good luck, don

  • cancerx6
    cancerx6 Member Posts: 25
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    You are both in my thoughts

    You are both in my thoughts and prayers as you begin this journey.  As many others have stated, one day or even one moment at a time.  Stay strong.

  • patricke
    patricke Member Posts: 570
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    HANG IN THERE

    I know that it's easier said than done, but no matter what, it's important to hang in there and do what needs to be done to beat the beast.  Yes, this is a huge hit, and I wish that it wasn't so, but hopefully after catching his breath he will regroup and go back into battle doing what needs to be done to win.  Many of us have, as you know, been in similar situations, so please convey that I send my encouragement to fight the good fight, fight with all he's got, and get to that recovery light and beyond at the end of the treatment tunnel!  He Can Do This!

    PATRICK 

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
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    donfoo said:

    more sour than sweet

    DX: stage IV HPV 16+ HNSCC of the trachea/thyroid/lymph/lung. Primary unknown.

    First, welcome to CSN. One of the truly best places to get first hand commentary from cancer patients and survivors.

    You did not offer the full diagnosis. Please add the TNM to the staging. Based on what you describe, this is a case with distant mets. If so it would be staged as M1 thus stage 4c.

    My treatment included 3 rounds of induction TPF chemo at 3 week intervals. Cisplatin and Taxotere and 5Fu are given on day one. A portable pack supplies 5FU for the following four days. It is removed on the 5th day. Two weeks off and start cycle again. The goal is to shrink the cancer as much as possible to make the following radiation fields smaller. This chemo does NOT kill cancer.

    For that matter only rads and surgery kill cancer. Chemo can be used to "mop up" microsized cancer cells and kill them but any detectable cancer is NOT killed by chemo.

    I'm no medical profession so please stay focused and ask the hard questions.

    Is this a case of distant mets?

    If so, are the treatment plans curative or pallative?

    Is the chemo going to cure and kill cancer or is it going to manage and minimze the cancer and spread of the disease?

    What happens next? Given known cancer is located in four areas, how will those areas be treated post induction TPF chemo?

     

    As to all stats. Already stated, if there is a 1% survival chance you have hope. Beyond that there is no way to know if based on your unique factors which group to which you belong. Just take one day at a time and use every minute to get as informed as you want. There is never enough time to get as informed as you need. Good luck, don

    Full Dx

    Don,

    All the oncologist said to us was stage 4 and he said the lung nodules were mets from the HNSCC. He said if the chemo didn't take them off, the surgeon would. This might be a dumb question...but why don't they do the fancy targeted radiation and aim it at the nodules while they're at it?  If it just hits a specific area, wouldn't that be an area to hit?

    i was mistaken about one of the drugs. Taxotere, not Celuximab. He's 24 hours into the 5FU now and will be released tomorrow with the pack that will go 96 hours in total. He will be on a 21-28 day cycle for the next dose of the same drugs. The doctor said 4-6 rounds with a CT next month? He's very vague. Really looking forward to talking to someone else. Hope MDA can get us in this week.

    The dr said the treatment goal is remission and then keeping this **** away forever with drug therapy... 

    Another question about chemo that might not make sense: My mother had multiple myeloma and did chemo 1995-1996. She was NED at the time of her death from sepsis. Doesn't that mean that the chemo killed the cancer? 

     

     

  • jim and i
    jim and i Member Posts: 1,788 Member
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    All I can offer is prayers.

    All I can offer is prayers.

    Debbie

  • donfoo
    donfoo Member Posts: 1,773 Member
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    Full Dx

    Don,

    All the oncologist said to us was stage 4 and he said the lung nodules were mets from the HNSCC. He said if the chemo didn't take them off, the surgeon would. This might be a dumb question...but why don't they do the fancy targeted radiation and aim it at the nodules while they're at it?  If it just hits a specific area, wouldn't that be an area to hit?

    i was mistaken about one of the drugs. Taxotere, not Celuximab. He's 24 hours into the 5FU now and will be released tomorrow with the pack that will go 96 hours in total. He will be on a 21-28 day cycle for the next dose of the same drugs. The doctor said 4-6 rounds with a CT next month? He's very vague. Really looking forward to talking to someone else. Hope MDA can get us in this week.

    The dr said the treatment goal is remission and then keeping this **** away forever with drug therapy... 

    Another question about chemo that might not make sense: My mother had multiple myeloma and did chemo 1995-1996. She was NED at the time of her death from sepsis. Doesn't that mean that the chemo killed the cancer? 

     

     

    tpf..

    OK. Induction TPF at 3 week intervals. Exactly as what I had. Of course, dosing is different for each of us as the blood work done before goes into the custom formula each time.

    If the doctor states the lung nodules are cancer and mets and from the HNC SCC, then it would be graded as M1 according the NCI guidelines. The radiation treatmet  treats the HNC cancer is directed in the oral area. All mention of mapping and radiation therapy is always targeting this one area, never two at the same time.

    Everything related to treatment for distant mets is a subject best conducted in detailed face-to-face consultations with your doctor(s). It would help brining along someone who can take notes and review the meeting with you afterwards. Also, you need to ask about tumor board or similar team oriented approach to overseeing your case.

    Getting other doctors to review and have input and guide our treatment plan is really critical in more complicated cases. Ask, insist on your presence at tumor board meetings and do your best to understand their discussion. Most will go over your head but you will certainly be able to pick up on the dynamic and how together they are or how differing the opinions may be as well as the recommendation.

    Work with your doctor who is presenting your case and ask all the questions you just posed here. Things like what and how are the met. tumors going to be treated? Are these curative therapies? Is the chemo given to control the disease or to kill it? Is the plan for long term drug therapy or just through the immediate treatment plan? If chemo is planned long term, ask again why.

    As to the CT at some weeks out. They likely want to check the results of the treatment. In my case, there was an immediate visible improvement (shrinking) of the tumor after the first round. More reduction after the second. After the third round there was zero visible tumor. The CT confirmed that there was complete resolution of the tumor. The area was still radiated to kill the cancer. The chemo did its job to minimize it but chemo does not kill cancer. The much smaller size allows the radiation field to be smaller and then less chance of long term effects from damage done by the radiation.

    Lastly, do not accept "vague". You deserve a complete picture of the situation you face. Speak up or have the person you bring along (maybe select one of your friends you tends to be a "take no guff" type) and ask and ask until you are fully satisfied and understanding. You can do this!

    Good luck, Don

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
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    Full Dx

    Don,

    All the oncologist said to us was stage 4 and he said the lung nodules were mets from the HNSCC. He said if the chemo didn't take them off, the surgeon would. This might be a dumb question...but why don't they do the fancy targeted radiation and aim it at the nodules while they're at it?  If it just hits a specific area, wouldn't that be an area to hit?

    i was mistaken about one of the drugs. Taxotere, not Celuximab. He's 24 hours into the 5FU now and will be released tomorrow with the pack that will go 96 hours in total. He will be on a 21-28 day cycle for the next dose of the same drugs. The doctor said 4-6 rounds with a CT next month? He's very vague. Really looking forward to talking to someone else. Hope MDA can get us in this week.

    The dr said the treatment goal is remission and then keeping this **** away forever with drug therapy... 

    Another question about chemo that might not make sense: My mother had multiple myeloma and did chemo 1995-1996. She was NED at the time of her death from sepsis. Doesn't that mean that the chemo killed the cancer? 

     

     

    Hang in there, 2

    At every stage from diagnosis to jaw replacement surgery, my first reaction was one of sadness and depression.  After a few days of sulking and self-pity, I came through to take on whatever it was and do what I needed to get past that hurdle--some would say I "put my big boy pants on" and did whatever was necessary to not let cancer get the best of me.  Find a way for you and your husband to summon the strength to take this one step/stage at a time, and before you know it, things will start to turn around for the better.

    mike

     

  • Crazymom
    Crazymom Member Posts: 339 Member
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    prayers

    sending prayers your way.  I know it is tough and will be thinking of you.  Ann

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
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    Crazymom said:

    prayers

    sending prayers your way.  I know it is tough and will be thinking of you.  Ann

    Good Day

    The prayers are working. Thank you all so much for the support. :)