SECOND TIME AROUND RESULTS AND FEEDBACK

luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
in Head and Neck Cancer #1
Looking for feedback from anyone who might have had a simillar recurrance and or same treatment.

I have metastatic spread from SCC / right tonsil/ mets to lymph nodes in neck.

The spread is to the lymph nodes in my Mediastynum (outside of lung) and several tumors in my right side of my lung. Doc's think it was probably there at the same time of my original diagnosis, but so small, it never showed up on any scans until now. NOTE: if they were there at time of original diagnosis, it took almost 2 years for them to grow to the tiny state they currently are.

The fact that it is in my nodes outside of the lung makes it pretty dangerous, VS just having it in one of the lobes in my lung where it could be surgically removed.

My treatment is considered a trial, not because the meds are experimantal, just a trial to see the difference between the US and European versions of the meds combined with adding 5FU to the mix.

My treatment is 3 drugs given in the following cycle.

First treatment over one day is Carboplatin and Erbitux, and then I am sent home with a 4 day infusion of 5FU.

One week later I receive just the Erbitux, and one more week later I receive just the Carboplatin. One week later I repeat with the 3 drugs at once and the cycle keeps going in the same pattern for 22 weeks.

In short, I am looking for any success story with tumor shrinkage / remission ETC. I am also looking for side effect stories. The first 5-6 days went really well, followed by one bad bout of diareah, and severe mouth sores and now sores appearing on my scalp and face.

My docs say I can stay on this treatment as long as there are NO new tumors found, or no growth of existing tumors over 20 percent. If for some reason I have to come off this trial, they say there are 5-7 other drug combos they can try.

I am of the opinion if the first option which I assume they think is the best, does not work, this will be the beginning of my demise??

I hope my unorganized jibberish makes some kind of sense to someone out there.

Thanks

Mike

Comments

  • ditto1
    ditto1 Member Posts: 660
    #2
    Hey Mike
    Im not going to be able to answer most of your concerns, but I did have Erbitux for 9 weeks along with Rads and 2 Cisplatins 3 weeks apart. Im just now 9 weeks out of tx for BOT Stage IV 2 lympnodes. I did not have any serious side affects from the Erbitux and I assume most do not, however that said some like Tim 6003 and Civil Matt did. Im sure they may offer there thoughts at some point. I did have some pimples more on torso chest, arms etc. Looks like some finger nail issues, other wise that was it for me. I just wanted to let you know Diane and I will keep you in our prayers. PS Hope you enjoyed your Football game.
  • Billie67
    Billie67 Member Posts: 898
    #3
    ditto1 said:

    Hey Mike
    Im not going to be able to answer most of your concerns, but I did have Erbitux for 9 weeks along with Rads and 2 Cisplatins 3 weeks apart. Im just now 9 weeks out of tx for BOT Stage IV 2 lympnodes. I did not have any serious side affects from the Erbitux and I assume most do not, however that said some like Tim 6003 and Civil Matt did. Im sure they may offer there thoughts at some point. I did have some pimples more on torso chest, arms etc. Looks like some finger nail issues, other wise that was it for me. I just wanted to let you know Diane and I will keep you in our prayers. PS Hope you enjoyed your Football game.

    Mike
    I had erbitux also. I can tell you that I got a slight case of acne which probably would have gotten worse except for the fact that my onc also RXd me some doxycycline which does wonders for acne. After 8 weeks of erbitux I started peeling. It started at my scalp and worked it's way over a few weeks to the soles of my feet. That was more annoying than anything else. My onc was telling me that erbitux is an amazing drug and he has several patients who will forever take it (probably for reasons much like yours) and he said it is really amazing to see the tumors just shrink away while patients are on it. I hope that is the case for you. I pray that you will have an easy time with your next sessions. Please keep us posted.
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    Erbitux user
    Hi Mike,

    I used (it used me) Erbitux. I got pimple like rash over entire torso and face. Even though it looked like it itched, it never did. While my face was covered with whitehead pimples you would have to get close to me to see it. If I left the pimples alone (any of them) they would disappear on their own. Now 28 weeks post, I no longer have dandruff (go figure) and my torso shows a light freckling from the acne.

    I wish you the best throughout this chapter of your treatments.

    Fellow warrior,

    Matt
  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #5
    Mike
    Can't comment as I have only had one round of erbittex and now will be going cisplatin . Just wanted to tell you I think it sucks you are facing this insidious devil a second time. You have tremendous strength and I know you can beat it again. You are in my prayers, and we are all here for you.
    Jim
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    No help here...
    I have no relevant experience or advice. But I'm holding you in my thoughts and hoping for the best possible outcome. As every patient reacts differently to medications, I don't believe you can make any assumptions about what would be the best medicine. They are just different medicines.

    This is NOT the beginning of your demise. I don't hear any fat ladies singing.

    Deb
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    No No No
    no way is there a DEMISE in your near or distant future. he's a boost to squash any neg. thoughts that might be around and replace them with only POSITIVE MENTAL THOUGHTS.

    head up, chin higher, believe it will be fine and it will be just fine, keep the faith... he is always there for you, along with never, never, never giving up.

    thrust me it works, 16 plus years ago cancer, 8 years ago broken neck, 4 plus years ago necrosis, 3plus years ago cancer and most importantly now still having another degree of wonderful day viewing the sun rise, top side green grass and sun sets. PTL

    be strong Mike

    john
  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    fisrpotpe said:

    No No No
    no way is there a DEMISE in your near or distant future. he's a boost to squash any neg. thoughts that might be around and replace them with only POSITIVE MENTAL THOUGHTS.

    head up, chin higher, believe it will be fine and it will be just fine, keep the faith... he is always there for you, along with never, never, never giving up.

    thrust me it works, 16 plus years ago cancer, 8 years ago broken neck, 4 plus years ago necrosis, 3plus years ago cancer and most importantly now still having another degree of wonderful day viewing the sun rise, top side green grass and sun sets. PTL

    be strong Mike

    john

    Well said John !
    Mike,
    I have no input other then seconding Johns post ! Stay strong our friend ! Katie
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #9
    fisrpotpe said:

    No No No
    no way is there a DEMISE in your near or distant future. he's a boost to squash any neg. thoughts that might be around and replace them with only POSITIVE MENTAL THOUGHTS.

    head up, chin higher, believe it will be fine and it will be just fine, keep the faith... he is always there for you, along with never, never, never giving up.

    thrust me it works, 16 plus years ago cancer, 8 years ago broken neck, 4 plus years ago necrosis, 3plus years ago cancer and most importantly now still having another degree of wonderful day viewing the sun rise, top side green grass and sun sets. PTL

    be strong Mike

    john

    THANKS FOR THE
    Kick in the ****. After I re read my post, it was sniveling and whiney. I did what I have told way too many people way too many times about being negative, and also looking for the good news I want to hear. We are all different and we will all end up the way we end up.

    There are allot of peole who have it way worse than I, and allot of people who have beat thje beast many more times than I have.

    I needed to hear what you had to say.

    Thanks a bunch John, and god bless to you and everyone here.

    Best

    Mike
  • luvofmylif
    luvofmylif Member Posts: 344
    #10
    luv4lacrosse said:

    THANKS FOR THE
    Kick in the ****. After I re read my post, it was sniveling and whiney. I did what I have told way too many people way too many times about being negative, and also looking for the good news I want to hear. We are all different and we will all end up the way we end up.

    There are allot of peole who have it way worse than I, and allot of people who have beat thje beast many more times than I have.

    I needed to hear what you had to say.

    Thanks a bunch John, and god bless to you and everyone here.

    Best

    Mike

    Don't know you but have read
    Don't know you but have read you are from St louis as are we. I wish you all the best in your fight and you seem like such a strong person. Keep up the good fight. Praying for you and your loved ones
  • KareGiver
    KareGiver Member Posts: 301 Member
    #11
    luvofmylif said:

    Don't know you but have read
    Don't know you but have read you are from St louis as are we. I wish you all the best in your fight and you seem like such a strong person. Keep up the good fight. Praying for you and your loved ones

    Mike,
    John's post is the way to think! However, don't be too hard on yourself for having "a moment" (or two). Those moments are the ones that can help you turn it around - at least that's what I think (with a little help from my therapist :) )
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #12
    luv4lacrosse said:

    THANKS FOR THE
    Kick in the ****. After I re read my post, it was sniveling and whiney. I did what I have told way too many people way too many times about being negative, and also looking for the good news I want to hear. We are all different and we will all end up the way we end up.

    There are allot of peole who have it way worse than I, and allot of people who have beat thje beast many more times than I have.

    I needed to hear what you had to say.

    Thanks a bunch John, and god bless to you and everyone here.

    Best

    Mike

    anything
    anything for a brother or sister in need


    not time to beat up on self.... time to focus on kicking cancer's ****
  • Pam M
    Pam M Member Posts: 2,196
    #13
    No Erbitux Experience, but
    I had Cisplatin with Taxotere and 5 day 5-FU infusions for induction chemo. Fabulous results.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #14
    Pam M said:

    No Erbitux Experience, but
    I had Cisplatin with Taxotere and 5 day 5-FU infusions for induction chemo. Fabulous results.

    Eribtux here Mike..
    my base of tongue and 1 lymph node melted away . :) Radiation as well, nothing else.

    My onc said I was one of the worst he had seen(reaction) to Erbitux ...horrible swelling, pimples, etc...though I looked like I had been in a nuclear accident I got through fine....

    Prayers for you my friend ....

    Best,

    Tim

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