Update, not good news and perhaps someone can make a suggestion on an Erbitux issue

jcortney
jcortney Member Posts: 503
edited February 2015 in Head and Neck Cancer #1

Well folks, the beast is back, and for the second time. This time there's not much to do about it.  It has metastasized to my lung(s) and more disturbing, it is back in the muscle under my tongue.  The reason that's more disturbing is there is absolutely no therapy for it.  The only good news is it looks like I'm the "poster child" for a H&N PD-1 (BM Nivolumb) study my Onc is getting for HPV that has metastasized to the lung.  It's seems its one of the VERY few of it's kind in the country.  If I don't get in, or it doesn't happen, my time is limited to months (18-36) with my current level of "quality of life'.

Now, what I need help with.  I'm still on Eribirtux/taxol and the skin on the pads of my fingers is splitting.  Kind of like paper cuts and hurts just like them.  So, I've tried all kinds of creams and lotions but I'm not making much progress.  Any suggestions?

I probably won't be posting much until the trial comes in March.  But if I get in, I'll update you guys often as this is obviously the future of cancer treatment.  IF you don't know what PD-1 research/treatment is all about, it is your best interest to google it and read up.  It's the only time I'll suggest google(ing) anything, but this is the best chance many of us will ever have.

I wish you all health.

Joe

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Sorry to hear

    I am currently on palliative chemo (taxol).  I have battled the beast 4 times before I got to this point.  You will have to decide on what quality of life you want at this point.  Taxol is not bothering me much.  The only thing that I can suggest for the fingers is to dip your hands into Aquaphor or thick hand lotion and cover with cotton glove or clean socks overnight.  Hopefully that will help soften the skin.  Please pop in before March.  We want to hear how you are doing.  I am being cautious with my posts but finally realized that people can just scroll down if they don't want to read them.  We are all survivor's but some of us have hit the point that we don't have tons of time left and there is not a board for us.

  • jcortney
    jcortney Member Posts: 503
    #3
    KTeacher said:

    Sorry to hear

    I am currently on palliative chemo (taxol).  I have battled the beast 4 times before I got to this point.  You will have to decide on what quality of life you want at this point.  Taxol is not bothering me much.  The only thing that I can suggest for the fingers is to dip your hands into Aquaphor or thick hand lotion and cover with cotton glove or clean socks overnight.  Hopefully that will help soften the skin.  Please pop in before March.  We want to hear how you are doing.  I am being cautious with my posts but finally realized that people can just scroll down if they don't want to read them.  We are all survivor's but some of us have hit the point that we don't have tons of time left and there is not a board for us.

    Thanks

    I've had that "quality of life" conversation with my doc's and my wife.  What I believe I will do, obviously subject to change but I don't think so, i will not accept not being able to eat, ala loosing my tongue.  My onc tells me it will take between 18 and 36 months of palliative treatment to slide to that state.  Not sure what my options will be at that point, but I think I would try and find a location that would allow me to retain my dignity. 

    I wish you peace.

    Joe

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    T&P

    Joe,

    So sorry about the news.

    One of the reasons for the HPV cancer “not to travel” is its preference for certain cell (skin types) like the tongue.

    When my fingers had the Erbitux crack, I used Liquid Band-Aid.  It stopped the pain of the crack and gave me some fake skin for a while.

    My heart goes out to you Joe.

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #5
    CivilMatt said:

    T&P

    Joe,

    So sorry about the news.

    One of the reasons for the HPV cancer “not to travel” is its preference for certain cell (skin types) like the tongue.

    When my fingers had the Erbitux crack, I used Liquid Band-Aid.  It stopped the pain of the crack and gave me some fake skin for a while.

    My heart goes out to you Joe.

    Matt

    Wasn't expecting that news

    Joe,

    So sorry to hear the news of mets to lung. I did taxol/erbitux last year for my recurrance and as mentioned used Aquaphor with cotten gloves at night which prevented the cracking. You can find 100% cotten gloves in some work/jersey gloves or garden gloves. Mike doesn't post allot but you might want to private message luv4lacrosse as he particiaped in a trial with some success. I believe his situation was similar.

    I understand your thoughts on quality of life. It is important for you to know we are here to support you through the good and bad times so please don't refrain from posting and continue to keep hope. God has a plan for each of us and we have to trust in that plan. Today and each day he gives you is a day to rejoice in.

    God bless,

    Candi 

  • wmc
    wmc Member Posts: 1,804
    #6
    So sorry to hear, but hope you get the study/trials

    Joe I am trully sory to hear it's back, and in your lungs and muscle. I hope the study will help and I do so understand quality of life and just how much it really does mater. You are in my thoughts and prayers, and please let us know how you are doing.

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    joe, my heart is breaking. 

    joe, my heart is breaking.  i'm so very sorry to hear this.  please don't feel like you have to stay away, you don't.  we are here for you no matter what.  Bev, the same goes for you.  You can post whatever you are feeling, you don't have to sensor what you're feeling or what you post.  we will be here for you too.  we are a family and a family sticks together in tough times and even cries together.  Bev and Joe, i am keeping you both in my thoughts and prayers.  In the meantime, don't ever give up.  there is hope until it is over and that could be many years from now.  we can think positive, I am.

    God bless you,

    dj

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #8
    debbiejeanne said:

    joe, my heart is breaking. 

    joe, my heart is breaking.  i'm so very sorry to hear this.  please don't feel like you have to stay away, you don't.  we are here for you no matter what.  Bev, the same goes for you.  You can post whatever you are feeling, you don't have to sensor what you're feeling or what you post.  we will be here for you too.  we are a family and a family sticks together in tough times and even cries together.  Bev and Joe, i am keeping you both in my thoughts and prayers.  In the meantime, don't ever give up.  there is hope until it is over and that could be many years from now.  we can think positive, I am.

    God bless you,

    dj

    Awful

    I am so sorry Joe you have to go through all this bull crap.  All you can do is pin your hopes on getting in the program and seeing good results.  If not, well, it's hard to really say what we feel here.  IMO, we are all afraid of getting news like yours.

     

    Good thoughts and positive vibes heading out your way.

     

    Just put one foot in front of the other,

     

    Tom

  • phrannie51
    phrannie51 Member Posts: 4,716
    #9
    Well crap!!

    Damn Joe.....I'm so sorry this is your news....however I'm praying that the trial might be the ticket you're looking for.  You know we're always here to talk to....and many of us have been here since you came....busmates!

    I've always used Bag Balm at night for cracks in hands and feet....Bag Balm and cotton gloves to sleep in.  Things tend to heal up overnight, amazingly enough.  I don't know how it would work for Erbitux caused cracks, but it sure works for the kind I get around my nails and on my heels....they DO HURT!!  You can pick it up in any drugstore.

    Tucking you into my pocket and sending big prayers.....

    p 

  • wmc
    wmc Member Posts: 1,804
    #10
    phrannie51 said:

    Well crap!!

    Damn Joe.....I'm so sorry this is your news....however I'm praying that the trial might be the ticket you're looking for.  You know we're always here to talk to....and many of us have been here since you came....busmates!

    I've always used Bag Balm at night for cracks in hands and feet....Bag Balm and cotton gloves to sleep in.  Things tend to heal up overnight, amazingly enough.  I don't know how it would work for Erbitux caused cracks, but it sure works for the kind I get around my nails and on my heels....they DO HURT!!  You can pick it up in any drugstore.

    Tucking you into my pocket and sending big prayers.....

    p 

    Bag Balm

    Bag Balm is also a very good antibiotic. Only thing that worked to clear up Diper rash. It is like vasoline and antibiotic all in one. Been using it for 30+ years.

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #11
    Joe

    Sorry about the bad news. Thoughts and prayers your way with hope that being a poster child works out.

    Fight on

          Jeff

     

  • jcortney
    jcortney Member Posts: 503
    #12
    CivilMatt said:

    T&P

    Joe,

    So sorry about the news.

    One of the reasons for the HPV cancer “not to travel” is its preference for certain cell (skin types) like the tongue.

    When my fingers had the Erbitux crack, I used Liquid Band-Aid.  It stopped the pain of the crack and gave me some fake skin for a while.

    My heart goes out to you Joe.

    Matt

    Liquid Band-Aid, Nu-Skin,

    Liquid Band-Aid, Nu-Skin, Second Skin.... didn't think of any of them.  Thanks Matt.

    J

  • donfoo
    donfoo Member Posts: 1,773 Member
    #13
    ugg..

    so sorry to hear you are losing the battles Joe. Try bag balm. comes in a green can and does miraculous things to cracked hands. God be with you my fellow soldier. Don

  • louhou13
    louhou13 Member Posts: 46
    #14
    PDL1 clinical trial

    Hi Joe, sorry you are dealing with a recurrence; I know first hand it's no fun. I am currently on a PDL1 clinical trial at The Angeles Clinic in Los Angeles (Medi4736). I've been on the trial since April and have had tumors shrink and disappear with practically no side effects. I have 4 more infusions and then go to monitoring status. My doctor is Dr. Ani Balmonoukian and she is awesome. Good luck and prayers your way.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    Never give up

    No matter what happens don’t give up, my C came back three times and the last time in 2006 I too was only giving about 6 months. We don’t know the reason why some people get cancer and others don’t and why it grows on some and on others it just stops. With me the third time it just stopped growing and stood there for many years then just faded away. I have a lot of problems living with side effects now but still alive, I also pray every day as I find strength in prayer.

     

    Tim Hondo

  • jcortney
    jcortney Member Posts: 503
    #16
    louhou13 said:

    PDL1 clinical trial

    Hi Joe, sorry you are dealing with a recurrence; I know first hand it's no fun. I am currently on a PDL1 clinical trial at The Angeles Clinic in Los Angeles (Medi4736). I've been on the trial since April and have had tumors shrink and disappear with practically no side effects. I have 4 more infusions and then go to monitoring status. My doctor is Dr. Ani Balmonoukian and she is awesome. Good luck and prayers your way.

    This was a great thing for me

    This was a great thing for me to read.  Thanks so much for posting.

    Joe

  • hwt
    hwt Member Posts: 2,328 Member
    #17
    Hondo said:

    Never give up

    No matter what happens don’t give up, my C came back three times and the last time in 2006 I too was only giving about 6 months. We don’t know the reason why some people get cancer and others don’t and why it grows on some and on others it just stops. With me the third time it just stopped growing and stood there for many years then just faded away. I have a lot of problems living with side effects now but still alive, I also pray every day as I find strength in prayer.

     

    Tim Hondo

    Joe

    I have posted my cousin's trial results several times but wanted to share again with you. He was told to get his affairs in order but he nor family were willing to accept that news. We all researched and my sister found a trial for him. His cancer was not H&N but melanoma mets to lung and liver. The trial itself was considered life threatening. He was in his 50s and lived a healthy lifestyle. It was 2-3 weeks of horrific tx in ICU but he just passéd his ten year mark of being cancer free! Also my brother was told he had kidney cancer that mets to lung, he went to Mayo, they did biposy and he actually had two primaries, both stage one and both treatable. He is also cancer free. Be positive, there is hope!

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