Cancer newbie and Wedding newbie

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onealways
onealways Member Posts: 6
in Head and Neck Cancer #1
Hello all,

My name is Elaine. Glad to be here and to have found this site. I've been looking around and it seems great so far. Loving all the feedback people give.

I am 25 with a rare cancer in the parotid gland. The cancer is called Lymphoepithelial carcinoma. I'm also EBV+.

We are taking the aggressive approach and hope to fix it once and for all. 3 rounds of Cisplastin and 34 days of IMRT xrt. Round 2 of chemo is next week. No peg, as no cancer was found in the nasopharygeal area. No bad experience with nausea yet, thanks to the great meds given. I am hopeful that Round 2 and Round 3 will go smoothly as well.

On top of it all, I was in the mist of planning my wedding. It is set for August 11, 2012. And I will NOT let this cancer take that away from me. It is all planned already, just waiting for the date to roll around (2 Type A personalities. The invites have been sent :) My future mother-in-law is working on my dress :) Wedding planning and working help me feel normal. This cancer is just a bump in the road. I just wanted to share my story and wanted to say hi.

All my doctors have been so wonderful. They know that we want to get married (especially since all the deposits were paid) and are helping us reach that goal. Yes, there is a risk that I may not be 100% that day, but cancer won't stop me. I will have my cake and eat it too :)

-Elaine

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    #2
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    May you walk down the aisle
    and dance, and eat cake and get married. What a goal for you to have. I bet there will be doctors at the wedding! Congratulations on the marriage. Welcome ambitious person that you are!
  • Laralyn
    Laralyn Member Posts: 532
    #3
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    Welcome a great support group!
    I wish you didn't have a reason to join us, but since you have one I'm glad you found us. :-)

    Congratulations on your wedding!

    Your treatment is similar to what a lot of folks have experienced so I'm sure they'll have good information for you. You're coming in with a great attitude and I really believe that makes a difference in your experience and your outcome.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
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    Welcome You....
    You sound like you have a plan...that's good..kick butt, a positive attitude is huge...keep it..and throw in a spoonful or two of humor.

    I was STGIIII Tonsils, also three rounds of Cisplatin and a few others along with the 35 daily rads.

    Next two chemos shouldn't be much different other than paying special attention to staying very well hydrated. Easy to not hydrate when you feel kina blah sometimes.

    You might end up having your future MIL take the dress in a size or two depending on any weight loss from the rads...no biggie I'm sure.

    Stay healthy and congrats to you and the future mister....

    Blessings,
    John
  • Greend
    Greend Member Posts: 678
    #5
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    Hang in there
    Sounds like you have the right attitude and that is vital to your well being during treatments. Look forward to your posting wedding photos for all to see.

    Good luck through it all.

    Denny
  • Ingrid K
    Ingrid K Member Posts: 813
    #6
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    Greend said:

    Hang in there
    Sounds like you have the right attitude and that is vital to your well being during treatments. Look forward to your posting wedding photos for all to see.

    Good luck through it all.

    Denny

    Welcome, Elaine...glad you
    Welcome, Elaine...glad you found this forum. These are the best people you will ever "cyber" meet. Sounds like you have a great plan in place. I think you WILL be dancing at your wedding with bells on...maybe won't be eating too much, but for sure a piece of cake will taste great. Wishing you an easy time with the treatments and a quick recovery. Keep your great positive attitude. It does help you to heal.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #7
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    Ingrid K said:

    Welcome, Elaine...glad you
    Welcome, Elaine...glad you found this forum. These are the best people you will ever "cyber" meet. Sounds like you have a great plan in place. I think you WILL be dancing at your wedding with bells on...maybe won't be eating too much, but for sure a piece of cake will taste great. Wishing you an easy time with the treatments and a quick recovery. Keep your great positive attitude. It does help you to heal.

    Welcome Elaine ..
    Sorry of course you have to join the group ....but just from your post I can tell you are already a winner.

    Keep us posted and come back often...whispered a prayer for you AND your family as I posted this ...

    Best,

    Tim / Idaho
  • onealways
    onealways Member Posts: 6
    #8
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    Tim6003 said:

    Welcome Elaine ..
    Sorry of course you have to join the group ....but just from your post I can tell you are already a winner.

    Keep us posted and come back often...whispered a prayer for you AND your family as I posted this ...

    Best,

    Tim / Idaho

    Thanks :)
    Thank you. I appreciate it :) All the kind words. The worst part is like you all have said, that I am joining the group. But it's good to see so many survivors. It gives me hope for recovery. At the very beginning, I was afraid it was terminal. And boy, that brought on a whole ocean of tears. But as I travel this road, I see that so many have come before me and made it out ok. Airhugs to all the supportive people in this forum.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
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    onealways said:

    Thanks :)
    Thank you. I appreciate it :) All the kind words. The worst part is like you all have said, that I am joining the group. But it's good to see so many survivors. It gives me hope for recovery. At the very beginning, I was afraid it was terminal. And boy, that brought on a whole ocean of tears. But as I travel this road, I see that so many have come before me and made it out ok. Airhugs to all the supportive people in this forum.

    Days Of Old
    I like you when first Dx thought of pale, frail, old discolored people withering away to non-existance.

    Those days are long gone for the most part...new technology, experience, drugs and machines....

    It's a new day girl in the longevity and survivorbility of a lot of cancers these days.

    JG
  • hawk711
    hawk711 Member Posts: 566
    #10
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    Skiffin16 said:

    Days Of Old
    I like you when first Dx thought of pale, frail, old discolored people withering away to non-existance.

    Those days are long gone for the most part...new technology, experience, drugs and machines....

    It's a new day girl in the longevity and survivorbility of a lot of cancers these days.

    JG

    take pictures
    Make sure you take pics of the wedding. We'd love to see an H&N survivor all dressed up!
    John (skiff) never gets dressed up for us!!!
    All the best to you. Keep up the positive attitude and you'll do fine.
    Steve
  • ditto1
    ditto1 Member Posts: 660
    #11
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    hawk711 said:

    take pictures
    Make sure you take pics of the wedding. We'd love to see an H&N survivor all dressed up!
    John (skiff) never gets dressed up for us!!!
    All the best to you. Keep up the positive attitude and you'll do fine.
    Steve

    you will do fine
    good folks here to come to and they take calls 24 7, Im fairly new, but recently promoted from a newbie to a Private 1st Class, (mainly on K p duty) but still a soldier against cancer. Just had my 1st chemo yesterday, today so far so good. So you enjoy getting ready for your wedding, your cancer will go away, but your marraige is forever.
  • osmotar
    osmotar Member Posts: 1,006
    #12
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    Bump in the road
    I never asked when dx last June why me, I said ok what are were going to do, I've got plans and this was and is going to be a minor detour. there were some minor pity parties, but also a type A they didn't last long, I figured cancer was going to meet it's match and there was no holy hoot way I was going to let it win. All treatments were completed in Dec, first PET was NED, subsequent scopes by my ENT all clear..and every day is a blessing. You will be a beautiful bride on your special day,

    Linda
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
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    hawk711 said:

    take pictures
    Make sure you take pics of the wedding. We'd love to see an H&N survivor all dressed up!
    John (skiff) never gets dressed up for us!!!
    All the best to you. Keep up the positive attitude and you'll do fine.
    Steve

    Dressin Up
    That's because I don't, LOL....
  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
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    osmotar said:

    Bump in the road
    I never asked when dx last June why me, I said ok what are were going to do, I've got plans and this was and is going to be a minor detour. there were some minor pity parties, but also a type A they didn't last long, I figured cancer was going to meet it's match and there was no holy hoot way I was going to let it win. All treatments were completed in Dec, first PET was NED, subsequent scopes by my ENT all clear..and every day is a blessing. You will be a beautiful bride on your special day,

    Linda

    Somebody said winner...and I agree Elaine...
    You sound like one to me. A positive force!! With big plans for the future. I'm just starting treatment too...feels like it, but I must be a private 2nd class, cuz I've got 2 chemo's in, and almost 4 weeks of rads......still "feel" like a baby here.

    Welcome to this club.....sorry you had to join, but it is the best place in the world for support.

    p
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #15
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    phrannie51 said:

    Somebody said winner...and I agree Elaine...
    You sound like one to me. A positive force!! With big plans for the future. I'm just starting treatment too...feels like it, but I must be a private 2nd class, cuz I've got 2 chemo's in, and almost 4 weeks of rads......still "feel" like a baby here.

    Welcome to this club.....sorry you had to join, but it is the best place in the world for support.

    p

    Sorry and Congratulations
    Hi Elaine,

    I too was diagnosed with a salivary gland cancer but not in the parotid. My Dr. removed my right one completely just to be sure. Mine was called Mucoepidermoid Carcinoma and is also a rare type of salivary gland cancer. Mine was a minor salivery gland. The base of my tongue which is quite rare.

    Try not to Google it and find your information here if possible. Just too much gore and negative news there. I made that mistake and almost lost my lunch looking at pictures.

    Your attitude is awesome! Go get married and don't let this little bump in the road stop you from enjoying your life. The recovery rates are very high for people like us so keep that in mind.

    Congratulations and many happy years to come.

    Tom
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #16
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    You go Girl!
    Hi Elaine:

    Sorry about cancer but what an attitude and you keep it up. You'll be beautiful walking down that aisle! Give that cancer the royal boot! God Bless!

    Jan
  • SeattleSL
    SeattleSL Member Posts: 1
    #17
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    Lymphoepithelial-like carcinoma of the parotid gland

    Hello...Elaine? I realize your posting was from 5yrs ago, but you are the first U.S. person we've heard of with LELC of the parotid gland. My husband was diagnosed with stage IV LELC in May 2015, went through surgery (neck dissection, parotidectomy), chemoradiation (3 cycles cisplatin + 33 doses of XRT). 5 mos later, the cancer recurred with mets to bone. He immediately was enrolled into a clinical trial combining pembrolizumab + another drug (vorinastat) and is 12mos complete response. I was wondering if anyone else out there has this diagnosis and what other treatments have been tried for metastatic recurrence.

    Thanks so much, Sue

  • Mom68
    Mom68 Member Posts: 108 Member
    #18
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    Maybe Start a New Thread Too?

    Hi Sue! I just saw this, and wanted to let you know that I'm thinking about you. Tommyodavey and I both were diagnosed with MEC, which is a rare form of oral cancer. Typically it is in the parotid gland. I'm very sorry your husband (and you) are going through all this. You might try posting a new thread all together. That might get more of a response. Also, you might try messaging Elaine to see if she'll respond to you personally. 

    Warmest Regards to you and your husband...Mary

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