New here & could use some help! HPV+ (p16) SCCHN Currently in treatment

enzoinanaudi
enzoinanaudi Member Posts: 3
in Head and Neck Cancer #1

Hello everyone. I've joined a group none of us want to join. In early August, I was diagnosed with Stage 1 HPV+ (p16) squamous cell carcinoma. The primary tumor is in the base of my tongue. I have four lymph nodes on the left side of my neck/jaw that are also positive (via the PET) for cancer. I had my tonsils and adenoids removed in kindergarten so that tissue isn't available for cancer. 

 

My treatment regimen is as follows: 

Cisplatin (100mg/m²) on treatment days 1, 17, & 33

34 rounds of high dose radiation. 

 

Im 43, 6'5" 235# personal trainer so in good shape going in to treatment with no other underlying health issues save for bad sinuses that have always given me problems with phlegm, etc, so this treatment cycle has just magnified that. 

 

I had a port and feeding tube put in before treatment began and have now transitioned to taking 100% of my calories via the G-tube as my mouth burns/sores make swallowing nearly impossible. Im maintaining my swallowing exercises to not lose that ability once treatment ends. Last week was week #2 of chemo. Im 19 radiation rounds in with 14 left. The chemo is currently kicking my ****. I believe I've lost nearly 12-13 pounds this week as I cant keep any of the calories down. Im on 5 different anti-nausea meds but this week they seem to be ineffective. 

 

I have been told I often give too much info, so I'll cut to my question: 

 

Im wondering different peoples' experiences with the 3rd round of chemo. My final dose of cisplatin is scheduled for radiation day 32. It was explained by my MO that the "point" of the radiation in this treatment plan was to magnify the effect of the radiation. If I'm only going to have radiation for 3 rounds after that final day of chemo (in fact, one of the 3 rounds is the same day so it likely won't get that benefit for that day), is there a marked improvement of my outcomes by having that 3rd round of 100mg/m² cisplatin right as im ending treatment? I will fully ask both my MO & RO their thoughts on the matter. But, I'm looking to the community for your perspectives on this issue, too. I have a 10 year old and 2 year old son, so will take the 3rd round if it improves my chances of being here for them for 30+ years! But, I'm not understanding the full benefit for those last 2/3 days of radiation for all the crap the chemo brings with it. 

 

Be patient with me. Im busy getting my butt kicked! 

 

 

Comments

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited September 2021 #2
    How treatment works

    Hello Enzo,

    We are glad you've discovered this site but indeed, its sad you had to seek it, in the first place.  You will get lots of good info here...

    Yes, the chemotherapy enhances the action of the radiation.  The chemotherapy " softens up" those malignant cells and better enables them to be Killed by the Radiation.  Its the Radiation that's able to get inside the deep recesses of our head & neck, to reach those cancer cells and blast them away.

    You are Stage 1.   Please try your very very hardest to complete All of your treatments.  Please believe me, this is not something to play around with and all of us KNOW, by first hand experience that the treatments are hell. They are

    However, you Do Not want any of those malignant cells to survive the treatment plan your doctor e have set forth, for your specific case.  If they ( the cancer cells) survive the treatments---- well, that's a bad scenario because most likely if they survive it,v they will be even more aggressive, and resistant to further treatments.  I happen to know this firsthand. Unfortunately ....

    You surely do not want to repeat any of this brutal stuff, right??

    So, the best way to insure its really done in & killed off, is to complete all your treatments.

    YES, ask your Medical Oncologist all your questions...... If you aren't tolerating the chemo, they may #1. Admit you for supportive measures Or #2. Switch you to a different chemo agent ...there are many different chemo drugs out there.

    I'm Crystal. That photo by my name is my boyfriend Randal, who passed away this May, from Stage IV head & neck cancer.

    I am Stage III Recurrent.  I am one of those whose SqCC Came Back 9 months after my Radiation treatments.

    Please first talk with your Oncology Team, and tell them All you are going through. Otherwise they won't know how to help you!

    Talk to them tomorrow, please.

    Crystal

  • enzoinanaudi
    enzoinanaudi Member Posts: 3
    edited September 2021 #3
    LitlCJdoll said:

    How treatment works

    Hello Enzo,

    We are glad you've discovered this site but indeed, its sad you had to seek it, in the first place.  You will get lots of good info here...

    Yes, the chemotherapy enhances the action of the radiation.  The chemotherapy " softens up" those malignant cells and better enables them to be Killed by the Radiation.  Its the Radiation that's able to get inside the deep recesses of our head & neck, to reach those cancer cells and blast them away.

    You are Stage 1.   Please try your very very hardest to complete All of your treatments.  Please believe me, this is not something to play around with and all of us KNOW, by first hand experience that the treatments are hell. They are

    However, you Do Not want any of those malignant cells to survive the treatment plan your doctor e have set forth, for your specific case.  If they ( the cancer cells) survive the treatments---- well, that's a bad scenario because most likely if they survive it,v they will be even more aggressive, and resistant to further treatments.  I happen to know this firsthand. Unfortunately ....

    You surely do not want to repeat any of this brutal stuff, right??

    So, the best way to insure its really done in & killed off, is to complete all your treatments.

    YES, ask your Medical Oncologist all your questions...... If you aren't tolerating the chemo, they may #1. Admit you for supportive measures Or #2. Switch you to a different chemo agent ...there are many different chemo drugs out there.

    I'm Crystal. That photo by my name is my boyfriend Randal, who passed away this May, from Stage IV head & neck cancer.

    I am Stage III Recurrent.  I am one of those whose SqCC Came Back 9 months after my Radiation treatments.

    Please first talk with your Oncology Team, and tell them All you are going through. Otherwise they won't know how to help you!

    Talk to them tomorrow, please.

    Crystal

    Thank you for the great reply, Crystal

    First, my deepest condolences on the loss of your boyfriend. A further condolences that you are having to re-fight this awful disease. 

    I will make sure to discuss my experiences with my team today. Thank you for the kick in the pants to remind me I don't want to do this twice! 

     

    Very much appreciated! 

    enzo (Keith)

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #4
    enzo,

    Well, I know Cancer is devastating news in ALL of our lives, here - but I picked up a few positives from your message and questions.

    First you're relatively young, healthy, and I only saw Stage 1. I also noticed just Cisplatin (and not "follow up" chemo).

    Cisplatin can affect your hearing, but I don't recall other permanent side effects from that. (5FU follow up was more challenging, for me.) I had hair loss, but I attributed that more to 5FU - and it was just temporary. I have just as much (or more) hair as I ever had, now - although it's a bit darker than it was...

    There's no doubt that Radiation and Cisplatin will take a lot out of a person, though. You'll need more rest, and maybe to slow down for a bit.

    I'm very glad to see that you're still taking food (even if it's just drinking) by mouth. As you state, that will keep your esophagus working well. I would suggest you keep trying solid (soft, "slick") foods like eggs. That will help you maintain muscle.

    It's a very challenging thing, to lose one's ability to taste or swallow. But, it will all come back - trust me! (I've been done with treatment over 2 years, and despite losing 45 pounts, I've managed to "find" 30 of it back ... and trigger my girlfriend to tell me I need to start watching my weight again!!!)

    I wish you the best. You sound like a very hardy individual, and I am putting my money on you winning this fight .. then helping others through their challenges!!

    MG

     

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    #5
    enzoinanaudi said:

    Thank you for the great reply, Crystal

    First, my deepest condolences on the loss of your boyfriend. A further condolences that you are having to re-fight this awful disease. 

    I will make sure to discuss my experiences with my team today. Thank you for the kick in the pants to remind me I don't want to do this twice! 

     

    Very much appreciated! 

    enzo (Keith)

    On your side

    Hi Keith

    It does sound like you've got great positives on your side, to beat this Stage 1 cancer and get it in your rear view mirror. You are young, at Good weight, are very strong physically and your Stage is early. All those are great factors in your favor.

    So, I will briefly tell you Why mine is recurrent and aggressive ... Even in spite of me finishing my treatments::

    First, I was born with a genetic Primary Immunodeficiency, which one of its characteristics is a trend toward cancers...

    My surgeon told me that he has Organ Transplant patients ( kidney, liver for example) who are also immunosuppressede due to the drugs they  have to stay on, to keep their transplants . Well, he told me that those in this group whom unfortunately get HNSCC, --- that their cancers are just like mine, more aggressive types and tend to be Recurrent.  He said it's definitely because of the Immunocompromised stste.

    Also, one of my tumors was sent to Foundation One, for Genomics testing. It was shown to be aggressive type. It was proven to be a Recurrent type. And it was shown to have Poor Response to immune Checkpoint Inhibitors.  ( and, the tumor carries the genetic mutations for HCC, Primary Liver Cancer. I don't have Liver cancer right now, but in the past 3 years I've developed liver disease.. Odd..ominous..)

    Those things above explain why mine is a poor responder to treatments.

    In your case though, it sounds like you have LOTS of great positives on your side !!!!

    To ensure that you keep that trend going, it's in your best interest to Do Whatever It Takes to Complete the job and go by all the recommended  treatments set forth by your oncology team.  

    I think it they can get your nausea under control, and you can get good nutrition and keep your strength, you will be set up for Success!!

    Here's hoping they come up with a plan to get you through it all, and onto the recovery road after you have finished it all

    Hang in there !!

    Crystal

  • Robbie Lowery
    Robbie Lowery Member Posts: 24 Member
    edited September 2021 #6
    Enzo

    Hello Enzo,

      I too, have HPV P16+ squamous cell carcinoma. I am also stage 1. I have 7 weeks of chemo and radiation to face and just started week 3.

    I am on citsplatin every tuesday and have fluids on fridays for kidneys etc. Not the bigger dose in 3 steps.

    I will have a total of 7 chemo treatments and 35 radiation treatments. I am just finished with #3 chemo and 11 radiations. You my friend, will come out of this just fine, escpecially at stage 1.

       MG was correct in saying this fight will bring you some need to slow it down abit, and you will need to rest abit ore to allow your body to do it's job in dealing with the army of C Cells. But, you got this, and yes, you need to finish the plan to assure that you have done your best to get rid of those M*****F***ers!!!

       I also send you major mojo for your fight..

     

    Robbie

  • LitlCJdoll
    LitlCJdoll Member Posts: 245 Member
    edited September 2021 #7
    Robbie Lowery said:

    Enzo

    Hello Enzo,

      I too, have HPV P16+ squamous cell carcinoma. I am also stage 1. I have 7 weeks of chemo and radiation to face and just started week 3.

    I am on citsplatin every tuesday and have fluids on fridays for kidneys etc. Not the bigger dose in 3 steps.

    I will have a total of 7 chemo treatments and 35 radiation treatments. I am just finished with #3 chemo and 11 radiations. You my friend, will come out of this just fine, escpecially at stage 1.

       MG was correct in saying this fight will bring you some need to slow it down abit, and you will need to rest abit ore to allow your body to do it's job in dealing with the army of C Cells. But, you got this, and yes, you need to finish the plan to assure that you have done your best to get rid of those M*****F***ers!!!

       I also send you major mojo for your fight..

     

    Robbie

    So cool!

    Robbie,

    I am so proud of you rallying to Fight !!  You go, and kick the g d cancer outta there for good !!

    Great job and I knew you would step up to Fight !  Keep at it and keep us posted on your progress !

    Crystal

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    edited September 2021 #8
    Long story short...

    The regimens are what they are because they have been shown to have the highest efficacy...often in terms of 5 year survival rates and all that jazz.  So, assuming your team was following the guidelines for your specific characteristics of risk and starting disease there is a reason why they do that 3rd dose of Cisplatin.

    I've seen plenty of folks on this board who opted out of the 3rd dose...  Some of which are crusing along just fine many years out.  Some had recurrent disease and are still dealing with it.

    At the end of the day it's your decision...but the treatment regimen won't kill you.  The cancer might.

    Good luck.  Brandon

  • Logan51
    Logan51 Member Posts: 468 Member
    #9
    Ditto

    to what Brandon said: 

    I've seen plenty of folks on this board who opted out of the 3rd dose... Some of which are crusing along just fine many years out.  Some had recurrent disease and are still dealing with it.At the end of the day it's your decision...but the treatment regimen won't kill you.  The cancer might.

  • enzoinanaudi
    enzoinanaudi Member Posts: 3
    edited October 2021 #10
    Thank you everyone!

    I had a good week. Monday I was in really rough shape after chemo the Monday before it. I hadn't been able to keep any calories in and my body was suffering. I opened a line of communication with the various participants in my treatment team (MO, RO, dietitian, oncology nurses, etc) and we made significant changes to my anti nausea plan. They also found my kidney functions had started to suffer, and my electrolytes were off. Oh, and I'd dropped 13 pounds in a 10 day period.

     

    So, I now getting IV fluids 5 days a week. They are going to do an Amend (longer lasting IV anti-nausea med) infusion every Monday going forward. They gave me a potassium and magnesium infusion via IV on Monday. They've switched out some of the initial anti-nausea meds I was on for others they think will help. And, I've been able to keep the calories in! 

     

    I heard the magic words for both if my oncologists "potentially decreases outcomes" from skipping the 3rd round of chemo, so have re-aimed my focus and I decided I WILL be getting the 3rd round two Tuesdays from now. After tomorrow's radiation treatment, I'll only have 9 more radiation treatments to go and that one last blast of Cisplatin.

     

    Thank you all for both the push and the good things to think about! As much as I trust my treatment team (and I do), the thoughts and opinions of those that have been down this road personally mean a lot to me as well.

     

    Again, a huge thanks to all of you! 

     

    Keith (enzo)

  • Logan51
    Logan51 Member Posts: 468 Member
    #11
    Yw

    And the best to you going forward, new normal and all.

     

  • motorcycleguy
    motorcycleguy Member Posts: 483 Member
    #12
    Enzo,

    Finishing treatment is a great feeling, and you're almost there!

    It takes a little while, but soon you'll be back in the gym, and loving life with a new perspective...

    I'm looking forward to hearing about your progress, and seeing your support for other survivors (if you choose to do that).

    Hang in there, buddy - life is great!

    MG

     

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #13
    enzoinanaudi said:

    Thank you everyone!

    I had a good week. Monday I was in really rough shape after chemo the Monday before it. I hadn't been able to keep any calories in and my body was suffering. I opened a line of communication with the various participants in my treatment team (MO, RO, dietitian, oncology nurses, etc) and we made significant changes to my anti nausea plan. They also found my kidney functions had started to suffer, and my electrolytes were off. Oh, and I'd dropped 13 pounds in a 10 day period.

     

    So, I now getting IV fluids 5 days a week. They are going to do an Amend (longer lasting IV anti-nausea med) infusion every Monday going forward. They gave me a potassium and magnesium infusion via IV on Monday. They've switched out some of the initial anti-nausea meds I was on for others they think will help. And, I've been able to keep the calories in! 

     

    I heard the magic words for both if my oncologists "potentially decreases outcomes" from skipping the 3rd round of chemo, so have re-aimed my focus and I decided I WILL be getting the 3rd round two Tuesdays from now. After tomorrow's radiation treatment, I'll only have 9 more radiation treatments to go and that one last blast of Cisplatin.

     

    Thank you all for both the push and the good things to think about! As much as I trust my treatment team (and I do), the thoughts and opinions of those that have been down this road personally mean a lot to me as well.

     

    Again, a huge thanks to all of you! 

     

    Keith (enzo)

    Keith It Seems

    You are well on your way with only 9 more rads.
    I think you are making the right decision getting that last chemo in.
    You want to go to the full extent if possible to eradicate this nasty disease the first time around.
    That's what my radiation doc told me in my first cancer, throat cancer, "This is a one-shot deal".
    It sounds like you have a great medical team to work with as they make any necessary adjustments in your treatment and meds to get you to the finish line.
    Wishing You The Best-Take Care-God Bless-Russ

     

  • ERomanO
    ERomanO Member Posts: 323 Member
    edited October 2021 #14
    Cisplatin...

    ... can also cause neuropathy.  I can attest to that.  Hopefully it won't affect you in that way because you'll have [at least] 20 more years to deal with it than I will.  However, I agree with the others that feel getting that 3rd dose is important.  Getting rid of the disease should be first and foremost on your priority list.

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