Just diagnosed - corrected post

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aemnoca
aemnoca Member Posts: 17
edited March 2014 in Head and Neck Cancer #1

 

Hi,

I was just told that I have stage IV tongue cancer, to say the least I feel that a boulder has been dropped on me. I want to thank you for this article it has been helpful. 

Can an you tell me about how long it was for you to return to travel and what will become the new norm?

Also is anyone familiar with Kaiser Permanente and how they stack up (senior advantage).

Mike N.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
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    energy

    Mike,

    Welcome again!

    Merging back into traffic is something we all do in our own way and (normally) at sub-light speed.

    If you feel ready you most likely are.  There is no better barometer than the mind and body.

    You need to push yourself to start.

    It is nice to stay focused on the end game, but until your body reacts to treatments it is a guessing game.  I am still a little behind the eight ball on energy (Thyroid changes), but there are members here to get you jazzed.

    Matt

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
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    Welcome Mike...

    As Matt said, there isn't really a one size fits all answer to much of this... It all depends on your body, your mind, tolerance or pain levels...

    We all react and recover differently in many ways, but all the same pretty much as a whole.., if that makes any sense to you.

     

    The body takes a huge hit, physically, mentally, endurance, etc...

    I've seen big young healthy guys buckle, and small old ladies excel.., you just don't know until you're in the thick of it.

     

    But I can tell you, though rough, it's doable...

     

    Stay very well hydrated, pack in calories whatever way you can, stay positive, keep you humor, be pro-active, and stay ahead of any pain with your meds and communication with your MD's.

     

    Best,

    John

  • KTeacher
    KTeacher Member Posts: 1,103
    #4
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    Superthread

    Welcome to the club that no one wants to join.  The Superthread is a must read to prepare for the fight.  We are here and this is a very supportive group.

    Kaiser, my mom and sister's families have had wonderful care with Kaiser in S.F. Bay area, my mother-in-law did not like the plan and care in the central valley.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
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    Hi Mike....

    and welcome to our virtual home.  You have found a great place here, tho....lots of support from people who are smart, kind, and experienced. 

    The new normal has lots of the same elements for everybody....just in different degrees.  I had 35 rads along with 3 Cisplatin chemos....then another 3 Cisplatins with a 5FU chaser after rads were done....my new normal is about half my taste is gone, and half my saliva....neither of which I find all that bothersome....I just learned to take water with me wherever I go.  Like those above me have said....the treatment can be pretty brutal, but we all manage to come out the other side and go back pretty much where we left off.  My ENT told me to plan on taking 6 months out of my life to do battle, and he was right....I was back to work in exactly 180 days after I left.  I might have been able to go back a week or so earlier, but not any earlier than that.  Fatigue after treatment had me by both arms for about 6 months after it was all over.

    I want to tell you that you ARE going to be ok.....the two main things you have to do everyday, no matter what is hydrate and get your nutrition....you might as well start eating anything and everything you like, now.....you'll need those extra pounds once treatment starts.   Stick close to this board, and we'll walk you through treatment as things come up....no question ever goes unanswered....EVER!!

    As far as the supplemental insurance goes.....I have no clue....I'm not 65 yet, and when my husband was getting supplemental insurance, I couldn't understand any of it.....sorry.

    p

  • dunedintech
    dunedintech Member Posts: 90
    #6
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    You will do it

    Hi Mike. Sorry to hear about the diagnosis but now you know what you are dealing with. As mentioned, treatment is tough but doable. Everyone finds a way through. There is no right / wrong way to get it done. While the majority of us experience many of the same effects, some don't. However you will work out what is best for you and get it done. The one common theme though which is consistent with us all is hydrate / eat / sleep, over and over. You will get tired of hearing this but it help.

    I am nearly 1 year out of treatment and settling into the new norm (surgery, 30 rads 3x cisplatins)  Again, everyones new norm is different. However most experience a dry mouth, weight loss and AWOL tastebuds. Also know this, when in the eye of the storm it can be hard to see how things can improve. Believe me they do. Incrementally, but they do and the new norm will take shape.

    Finally, this site and the community here are a suoerb tool / source. There are no stupid questions and I found reading some of the earlier postings very helpful as well.

    CPC

  • wmc
    wmc Member Posts: 1,804
    #7
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    Welcome aboard.....

    Welcome to the H&N form, and as everyone said sorry you need to be here.

    Yes read the superthread. It is a great bunch for suport and knowledge.

  • cureitall66
    cureitall66 Member Posts: 913
    #8
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    Welcome...

    Welcome ...

    The bus we ride on is the same, but the ride can sometimes be rougher for some than others.

    There are plenty that are not on the bus quite yet (like yourself), on the bus, and off the bus, that are on this forum and will be plenty helpful along the way. Be sure to reach out whenever you have questions.  You will find this forum full of experienced people...and wonderful at that!

    I was a caregiver to loved one with Stage IV BOT (base of tongue), lymph nodes, HPV+.  He was dx Aug 2012. Ended tx Nov 2012. PET scan Feb 2013 was NED.  He is scoped every 6-8 wks (for 2 years) with chest xrays once a year.  Tx plan was 35 wks rads, 7 chemo.  He is doing well with some minor issues that we've had to work through. 

    Stay focused, keep friends and family close, and remember your CSN family is here for you.

    Life gets better....with the new normal or abi-normal as John and Matt like to say...Laughing

    God Bless,

    ~C

  • hwt
    hwt Member Posts: 2,328 Member
    #9
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    cureitall66 said:

    Welcome...

    Welcome ...

    The bus we ride on is the same, but the ride can sometimes be rougher for some than others.

    There are plenty that are not on the bus quite yet (like yourself), on the bus, and off the bus, that are on this forum and will be plenty helpful along the way. Be sure to reach out whenever you have questions.  You will find this forum full of experienced people...and wonderful at that!

    I was a caregiver to loved one with Stage IV BOT (base of tongue), lymph nodes, HPV+.  He was dx Aug 2012. Ended tx Nov 2012. PET scan Feb 2013 was NED.  He is scoped every 6-8 wks (for 2 years) with chest xrays once a year.  Tx plan was 35 wks rads, 7 chemo.  He is doing well with some minor issues that we've had to work through. 

    Stay focused, keep friends and family close, and remember your CSN family is here for you.

    Life gets better....with the new normal or abi-normal as John and Matt like to say...Laughing

    God Bless,

    ~C

    Welcome Mike

    My dx was 01/2012 cancer of lower jaw. Surgery 01/2012 finished rads/chemo 05/2012. Seems like it was atleast 3 months post tx before I felt like I could or wanted to travel.  I have since been out of the country a couple of times and to Florida a couple of times for vacation and numerous times to Mayo in MN. for a recurrence. Plenty of energy, just have to chose resturants more carefully and use sunscreen in the treated area along with wearing a hat for prolonged periods in the sun, especially the first year. My doctor said they only treated the head & neck area and the remainder of my body was unchanged so I treat it as such. The only other prep I had to make when I flew commercial was carrying a small bottle of water with the ounces marked to make it through long airport security lines until I could reach the otherside and buy a bottle of water. I have enjoyed every trip post tx. so start looking forward to happy travels for yourself.

    Candi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
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    hi, Mike, and welcome to our

    hi, Mike, and welcome to our family although i'm sorry you need to be here.  you will find a lot of support, info and encouragement here.  a very good place to be.  my cancer was of the larynx, 8/09 went thru 35 rad tx, 2/12 had recurrence, had total laryngectomy.  doing fine since then,  just celebrated my 2 yr anniv of being cancer free!!  yay me!  you will make it thru and we will all be here for you while you take this journey.  you must remember to stay hydrated no matter how you feel.  also, be sure to swallow as much as you can b/c if you don't use those muscles, you can lose the ability to swallow.  i haven't traveled so can't help there.  hang in there and please keep us posted on your progress.

    God bless,

    dj

  • aemnoca
    aemnoca Member Posts: 17
    #11
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    debbiejeanne said:

    hi, Mike, and welcome to our

    hi, Mike, and welcome to our family although i'm sorry you need to be here.  you will find a lot of support, info and encouragement here.  a very good place to be.  my cancer was of the larynx, 8/09 went thru 35 rad tx, 2/12 had recurrence, had total laryngectomy.  doing fine since then,  just celebrated my 2 yr anniv of being cancer free!!  yay me!  you will make it thru and we will all be here for you while you take this journey.  you must remember to stay hydrated no matter how you feel.  also, be sure to swallow as much as you can b/c if you don't use those muscles, you can lose the ability to swallow.  i haven't traveled so can't help there.  hang in there and please keep us posted on your progress.

    God bless,

    dj

    PET Scan

    I will have the PET Scan on this Thursday. Keeping my fingers crossed that it is not worse than the first dx. The physical inspection did not show any other nodes swollen so like I said I am keeping my fingers crossed. 

    Still trying to lift the boulder off me. I feel weak from the stress of it all.

    thanks to everyone for the info and positive wishes.

    Mike

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