FINALLY HAVE A DIAGNOSIS AND PLAN

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luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
Hope all is well with you today. Yesterday I met with my Onco Doc, and I guess it went better than expected. I have Metastatic Disease in my lungs from my original SCC of my Tonsil and neck nodes. He says this is better for me VS A new primary in my Lung. Surgery is a no go as with Lymph Node involvement in my Mediastynum, it would be pointless. Radiation is not recommended as damaging my lungs would create more problems than I would want to deal with. I decided on a clinical trial using 3 drugs that are all considered Tier 1 drugs and all FDA approved. On the 24th I will start with an infusion of Carboplatin, followed by a 4 day infusion of 5FU via "man purse" and then an infusion of Cetuximab. The Cetuximab is the focus of the trial for two reasons. 1) Adding it to the two other drugs, and the study is focusing on the US version VS the Europen version from Eli Lilly.

I will do a totsl of 6 cycles over a 22 week period, getting a "reconissance scan" after the completion of 2 cycles. I can stay in the trial as long as there is not tumor growth greater than 20% or new tumors showing up. If I have to come off the trial, my Onco says he has up to 5 other treatment regiments he can try.
Survival was not really discussed, but he said "you can plug yourself in for 2 more years, and we will go from there."
Not cureable, but look it as managing it like any other chronic health condition, IE: Diabetes, ETC.

Anyone else have a similar story to share??

Best

Mike
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Comments

  • blackswampboy
    blackswampboy Member Posts: 341
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    Cetuximab = Erbitux
    no experience with the other two drugs, but Cetuximab = Erbitux. plenty of experience with those mouse antibodies, lol.
    I was in a research study using Cetuximab and rads for my HPV-16 tumor, and had 8 infusions. in addition to the standard Cetuximab rash over face and upper body, it lead to bizarre infections of both fingernails on my middle fingers. it took four different antibiotics (including IV), a whole lot of neosporin, and a month to clear up the infections.
    but all-in-all, the Cetuximab was bearable. the side-effects do go away fairly quickly (compared to radiation side-effects), without the potential kidney damage and/or hearing loss from platinum-based chemo.
    although I hear that for those who come up allergic to Cetuximab, the rash can be horrible. for me, it was minor discomfort and a whole lot of ugly.
    oh, and Cetuximab really drains your body's potassium and magnesium levels--had to get a couple of extra infusions for both.

    best wishes to you! sounds like you've got a great attitude, and that will take you far.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
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    Ya Go
    Go Mike Go. great to hear you have a plan. you have done a fight before so we know you can do it again and again and again if needed.

    wish i has experience for you, so i will keep you in thoughts and prayers for you and your family

    john
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Hi Mike
    robinleigh is one such. Her husband has been on clinical trials formquite awhile now, and the last I spoke to her was doinf quite well. She is here from time to time, so you might PM her to get her attention. I did see her post on the board last week. Robin is very knowlegeable in this area, has extensive experience with the Lance Armstrong foundation, etc, and shes quite helpful.

    best to you

    Pat
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Hi Mike
    duh.
  • tuffenuff
    tuffenuff Member Posts: 277
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    Having a plan at least gets
    Having a plan at least gets your mind in the right place. Much better than the wondering we tend to get bogged down with.

    How long ago was your original diagnosis and was it HPV positive?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    TPF Protocul
    Similar to what Linda and I had...

    I had three cycles infused of Cisplatin, Taxotere and 5FU (man purse for four days each cycle), then seven weeks of Carboplatin concurrent.

    The Erbitux I have read is one of the main drugs they use with good results on mets.

    I can say that the secondary tumor that I had, completely dissolved away with the infused Cisplatin, Taxotere and 5FU even before I started the Carboplatin. It has not shown on any scan since....

    So hoping that you get excellent results from the trial.

    Best,
    John
  • katenorwood
    katenorwood Member Posts: 1,912
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    Much success with trials out there !
    Mike,
    I personally haven't done any chemo as of this date. But I have a few ACC friends in trials...and are handling it better than expected. They have time off with their families inbetween treatments. And as far as getting kicked off the trial...one day at a time with these issues. You have a great team working with you. Stay pumped that this is gonna work...and remember we all have your back ! Katie
  • Billie67
    Billie67 Member Posts: 898
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    Much success with trials out there !
    Mike,
    I personally haven't done any chemo as of this date. But I have a few ACC friends in trials...and are handling it better than expected. They have time off with their families inbetween treatments. And as far as getting kicked off the trial...one day at a time with these issues. You have a great team working with you. Stay pumped that this is gonna work...and remember we all have your back ! Katie

    Erbitux
    I did erbitux and rads but jot the other drugs you mentioned. Erbitux gave me a rash but that was about it. I did it weekly for 8 weeks. I have my first post treatment PET/CT in 2 weeks so we'll see how it worked for me. My dr did say that he has patients who are on it as a maintenance treatment and (his words) " it's amazing to see the tumors just melt away"
    I pray this will be the case for you.
    I know some people have finger and toenail infections related to erbitux but out of my 4 buddies(I make 5) at chemo, only 1 of them had this happen to them and hers wasn't severe. We were all on erbitux and 2 of them were on other meds too. Not the lady tho, she was just on erbitux. Just trying to give you some statistics :-)
    Good luck with your treatment and please keep us posted.
    Take care,
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    good plan
    Hi Mike,

    Glad you have a plan, I like what the doctor said (he sounds hopeful and positive).

    I also used the Erbitux, great rash, loaded pimples like a teenager.

    I wish you the best of luck and as smooth of sailing as possible.

    Best,

    Matt
  • Crazymom
    Crazymom Member Posts: 339 Member
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    Drugs
    What stage was you tonsil and neck nodes. I have had tonsil and neck nodes. I am six months out from radiation and I had 6 weeks of Carboplatin and Erbitux. I had no problems with the Carboplatin, but bad rash from Erbitux. It went away a couple of weeks after I finished taking the Erbitux. My tumors were practically gone after 2 weeks of the Erbitux.

    Praying for you.

    I have a hard time believing that the original tumor took 18 months to move to your lungs. I guess I am not that familiar with how this cancer works. I would of thought it would have happenned sooner. Keep fighting and enjoy everyday you have.

    Ann
  • ToBeGolden
    ToBeGolden Member Posts: 695
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    Erbitux In Last Round
    2009: Round 0: Voice Therapy (really!)
    2010: Round 1: Radiation.
    2011: Round 2: Total Laryngectomy.
    2012: Round 3: Radiation + Erbitux + Cisplatnum.
    2013: Round 4: ???

    Round 1 was the worst. The only problem I had with Erbitux was the hassle insurance gave me over it. But that will be the subject of another thread. Rick.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Glad there is a plan, man...
    Mike - fight on. You can get through this. So glad you have options.

    Deb
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    D Lewis said:

    Glad there is a plan, man...
    Mike - fight on. You can get through this. So glad you have options.

    Deb

    Hi Mike...
    Wonderful you got a plan...

    I had radiation and Erbitux only ...nothing else...and I am now 8 months out and had my NED already! My primary tumor melted away .....

    ...I had the WORST reaction to Erbitux ....onc said very rare, but I was "the worst" he had ever seen ..so I'm sure you will get the norm reaction..but my oncologist also said a reaction just means the drug is working as it should..

    Whispered a prayer for you right before I hit post!! Prayed your trial is so successful you come back cleared! :)

    Best to you Mike,

    Tim
  • Pam M
    Pam M Member Posts: 2,196
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    Skiffin16 said:

    TPF Protocul
    Similar to what Linda and I had...

    I had three cycles infused of Cisplatin, Taxotere and 5FU (man purse for four days each cycle), then seven weeks of Carboplatin concurrent.

    The Erbitux I have read is one of the main drugs they use with good results on mets.

    I can say that the secondary tumor that I had, completely dissolved away with the infused Cisplatin, Taxotere and 5FU even before I started the Carboplatin. It has not shown on any scan since....

    So hoping that you get excellent results from the trial.

    Best,
    John

    Same Drugs as John
    I was stage four - two lymph nodes involved - red flag went up when I found a really big lump sticking out of my neck. During my induction chemo (CIsplatin, Taxotere and 5 FU), You could see (and feel) the great huge lump get smaller.

    Very glad you've got a game plan in place. Git 'r done!
  • Greg53
    Greg53 Member Posts: 849
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    Tim6003 said:

    Hi Mike...
    Wonderful you got a plan...

    I had radiation and Erbitux only ...nothing else...and I am now 8 months out and had my NED already! My primary tumor melted away .....

    ...I had the WORST reaction to Erbitux ....onc said very rare, but I was "the worst" he had ever seen ..so I'm sure you will get the norm reaction..but my oncologist also said a reaction just means the drug is working as it should..

    Whispered a prayer for you right before I hit post!! Prayed your trial is so successful you come back cleared! :)

    Best to you Mike,

    Tim

    Dude!
    Really, a man-purse! I don't where we're gonna hang out when you get a man-purse............ but we'll figure it out.

    Sounds like a good plan Mike.

    Postive thoughts and good mojo headed your way!

    Greg
  • VivianLee5689
    VivianLee5689 Member Posts: 546
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    Keep us posted
    Mike,
    I am glad to hear you have a plan. I pray that your treatments go successfully. It is amazing how much support you have here. We are all pulling for you. I am glad to here you are up for the challenge.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Keep us posted
    Mike,
    I am glad to hear you have a plan. I pray that your treatments go successfully. It is amazing how much support you have here. We are all pulling for you. I am glad to here you are up for the challenge.

    Plan.
    Nice to hear you have finally got a plan in place Mike, I have
    faith that everything will work out for you.
    The Lord works in mysterious ways, and He will make this
    trial work for you.

    Have faith and stay positive.

    God bless
    Tonsil dad,

    Dan.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    Greg53 said:

    Dude!
    Really, a man-purse! I don't where we're gonna hang out when you get a man-purse............ but we'll figure it out.

    Sounds like a good plan Mike.

    Postive thoughts and good mojo headed your way!

    Greg

    GETTIN SICK IN STYLE
    Not to worry on the man purse, the wife will hook me up with Kate Spade or Coach.

    Might have to hang out at the "foo foo" club.

    Mike
  • osmotar
    osmotar Member Posts: 1,006
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    Similar
    I had what you refer to the "man purse", your a bit more polite than what I called the 5fu beast that I had to wear from my monday all day treatment to friday, I could'nt wait for 2pm on fridays to have the beast removed. It wasn't the chemo it was the inconvience in having to sleep , drive, etc with that thing on.

    Sounds like they have a plan of attack for you,best of the best of my mojo coming your way.

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Greg53 said:

    Dude!
    Really, a man-purse! I don't where we're gonna hang out when you get a man-purse............ but we'll figure it out.

    Sounds like a good plan Mike.

    Postive thoughts and good mojo headed your way!

    Greg

    LOL...
    I strapped it on like a shoulder holster, over the shoulder..LOL.

    That was usually good for a few looks.

    If I wanted to have fun, I would wear it as a fanny pack, go to Disney, wear the Aloha shirt, sandals with black socks and didn't use deodorant for the entire time....

    I blended right in, LOL....

    JG