Update on mets

hwt
hwt Member Posts: 2,328 Member
in Head and Neck Cancer #1

First, thank you to everyone for their well wishes and support. I had the PET scan yesterday and my sister, brother, husband and I met with the doctor. The good news is no uptakes in lungs, liver or bones so reoccurance is isolated. Tumor board is meeting tonight but some type of radiation will likely be the tx. even if this area received it previously. Yes, you can radiate the same area twice with additional concerns. If it is the traditional IMRT(?) he said the side effects would be much less than before. Other options on the table are gamma knife, cyber knife or proton therapy. Leaning toward gamma knife and getting a second opinion from Mayo in Rochester. I heard the words treatable and still cureable so I am up for the fight. Of course, there always has to be that little something extra which was a slight uptake on floor of mouth on other side, thought to be residual or movement and not of concern "at this time".   I always thought of cyber knife and gamma as surgical procedures, I guess because of the word knife. They are both radiaiton therapy. There are risks but it's a one time shot rather than 7 weeks. Knowing others here have fought the fight two and three times with success gives me hope.

 Hugs,

Candi

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Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    go get em Candi

    Three times for me, as you know.  Two times through radiation.  Now 18 months out from last therapy, NED.  Good quality of life, no complaints.  Keep yer chin up!

     

    Pat

  • Greg53
    Greg53 Member Posts: 849
    #3
    Candi

    Candi,

     

    Just saw your earlier message.  Hang tough, you’ll beat this!  Being another St. Louisan, but going to a different facility, I could give you another local name if you are interested.  I would highly recommend him and I think LTS would also.  If you’re interested PM and I can give you more info.

     

    Positive thoughts and Mojo being sent your way!

    Greg

     

     

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    candi, praying that they

    candi, praying that they decide on the best trmnt and then get it started.  so sorry u have 2 go thru this again but we will b there all the way for support and encouragement.  keep us posted on ur progress.

    dj

  • VanessaSLO
    VanessaSLO Member Posts: 283
    #5
    Yes, Candi, you can do it!!!

      Oh, I am so relieved that you have all information necessary and words TREATABLE and CURABLE are just fine for me Laughing.

    I'll keep you in my strongest prayers. You will be just fine, I just know it...

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Damn rights!!!

    The fight is on!!  As LTS said..."go get'em, Candi".....we're all behind you 110%.....

    p

  • peggylulu
    peggylulu Member Posts: 375
    #7
    Mets

    Candi it sounds like you got better news than you expected ! Treatable - Cureable sounds great and no mets to lungs, bones or Liver !!! I agree with everyone else you can do this !!! I too thought Cyber knife andgamma were surgeries . One time sounds a lot better to me than 7 weeks .

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #8
    Kick some butt!

    Treatable and curable are two words that I am very glad to hear they told you!  Go and kick this thing's butt knowing we are all with you all the way!!  Prayers going up for you each day!

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #9
    What a Difference!

    A couple of days make! Glad to hear there are treatment options. Now go give Jack a swift kick in the butt!

    "T"

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Hang Tough

    Miracles do happen.....

    Like my old bud Kent always reminded us...

    BELIEVE....

    John

  • Hard12Find
    Hard12Find Member Posts: 218 Member
    #11
    Candi

    That is great news, (considering the alternatives). You can beat this beast again, sounds like you caught it before it got much of a start. Continued prayers for a complete and trouble free recovery, as always we are here for you....

    Jim

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #12
    good luck

    Candi,

    With the full support of your H&N family, you can do it!

    Matt

  • cureitall66
    cureitall66 Member Posts: 913
    #13

    Sounds like you are ready to go! My thoughts and prayers are with you.

    Go get it done!!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    Hi Candi

     

    3 C’s for me, twice radiation all in the same area, yes you can do it and survive. Keep your positive attitude and prayer and you can do almost anything.

     

    God Bless

    Hondo  

  • hwt
    hwt Member Posts: 2,328 Member
    #15
    Hondo said:

    Hi Candi

     

    3 C’s for me, twice radiation all in the same area, yes you can do it and survive. Keep your positive attitude and prayer and you can do almost anything.

     

    God Bless

    Hondo  

    Thanks everyone!

    I'm back in the whirlwind of appts. and scans. Got a call last night at nearly 10pm and met with ENT at 8 this morning. Tumor is too low for gamma knife. He said time is of the essence. In retrospect, this lymph node was enlarged a year ago but nobody noticed. Now aggressive. An exam today did not show any hidden source in the mucus membrane. Have an appt. tomorrow to see if cyberknife is an option and next step would be to look into proton therapy. Hard to believe, STL doesn't have proton therapy yet. If I go that route, maybe Tampa. Everything has been sent to Mayo. Yet to hear. Concern is this node did get 56 grays a year and a half ago and apparently, it did not kill it so dr. is concerned maybe resilient to rads altogether. No chance of cure with chemo. No clinical with rads. Will keep you posted.

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #16
    Keep Up the Fight

    Having gone through multiple treatments now (including radiation, surgery and several rounds of chemo), there's nothing to do but keep up the fight. Keep the Big C at bay. Best wishes. Rick.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #17
    ToBeGolden said:

    Keep Up the Fight

    Having gone through multiple treatments now (including radiation, surgery and several rounds of chemo), there's nothing to do but keep up the fight. Keep the Big C at bay. Best wishes. Rick.

    good 2 c u, rick!  have a

    good 2 c u, rick!  have a great nite.

    dj

  • Hummingbird3
    Hummingbird3 Member Posts: 67
    #18
    Prayers are going up.  Pray

    Prayers are going up.  Pray you get a peace about your decision, all thE right people are put in your path and I believe you already have the will, strength aNd endurance to Beat this!  Many blessings Candi......Christie 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #19
    hwt said:

    Thanks everyone!

    I'm back in the whirlwind of appts. and scans. Got a call last night at nearly 10pm and met with ENT at 8 this morning. Tumor is too low for gamma knife. He said time is of the essence. In retrospect, this lymph node was enlarged a year ago but nobody noticed. Now aggressive. An exam today did not show any hidden source in the mucus membrane. Have an appt. tomorrow to see if cyberknife is an option and next step would be to look into proton therapy. Hard to believe, STL doesn't have proton therapy yet. If I go that route, maybe Tampa. Everything has been sent to Mayo. Yet to hear. Concern is this node did get 56 grays a year and a half ago and apparently, it did not kill it so dr. is concerned maybe resilient to rads altogether. No chance of cure with chemo. No clinical with rads. Will keep you posted.

    Candi

     

    I have heard a lot of good things about the Proton Therapy mostly that is does not have a lot of the bad side effects that normal radiation give. Just keep up the fight and remember we are all here pulling for you. I am praying that God will open doors for you to get the help you need.

     

    God Bless

    Hondo

  • Hondo
    Hondo Member Posts: 6,636 Member
    #20
    Hummingbird3 said:

    Prayers are going up.  Pray

    Prayers are going up.  Pray you get a peace about your decision, all thE right people are put in your path and I believe you already have the will, strength aNd endurance to Beat this!  Many blessings Candi......Christie 

    Hi Christie

    Welcome to the family here on CSN. Sorry to know you are in this boat with us having C, but as you already know your faith in God will only become stronger in this walk with Him by your side.

     

    God Bless

    Hondo  

  • hwt
    hwt Member Posts: 2,328 Member
    #21
    Hondo said:

    Hi Christie

    Welcome to the family here on CSN. Sorry to know you are in this boat with us having C, but as you already know your faith in God will only become stronger in this walk with Him by your side.

     

    God Bless

    Hondo  

    Options narrowing

    Gamma knife is off the table because tumor too low below brain. Met with Cyberknife doc here in STL yesterday and he said he wanted to "take a shot at it" but did not offer much optimism and was filled with very risky side effects to the point that I must consider quality of life. Proton therapy is next investigation (MD Anderson or Indiana Univ). Dr. at Mayo calling back Monday or Tuesday, team is reviewing now. Other than some anxiety, I really feel good physically. Occasional headache where tumor is. Doctor yesterday asked when those headaches started and I said "when they told me it was there". I have a strong faith, loving and supportive family and have been blessed with the ability to travel where and when needed for tx. if there is one. Will keep you all posted.

    Hugs

    Candi

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