Class of 2012 isn't doing too good....UPDATE!!!!!

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  • Kapital
    Kapital Member Posts: 52 Member
    #62
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    Phrannie,
    When I was

    Phrannie,

    When I was desperate I found this site. Hungry for information, I devoured the life experience of those that generously gave of themselves, in the hopes of making this road a bit easier.  Your posts, in particular, have been a beacon of light, shinning wisdom and humor into corners that circumstances made dark. Although we are strangers, I just wanted you to know that I very much appreciate the generosity of your soul and wish you healing. You made a difference in our journey. Thanks.

                                                                                                                        Kapital

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #63
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    whew!

    P51,

    Big Sky, Big Relief!

    Thanks Stacey!

    Very best,

    Matt

  • Barbaraek
    Barbaraek Member Posts: 626
    #64
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    I am so thankful

    that you caught these nodes early so you can deal with them. So many blessings - a great ENT, a friend who advocated, and prayers from many here on this site. You have richly deserved all those blessings for being such a godsend to others Phrannie! Now take a deep breath and kick those cells outta your body with a fantastic treatment plan. you got this!

    Barbara

  • jcortney
    jcortney Member Posts: 503
    #65
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    Ok, just some input having been there

    The neck dissection is a pain in the butt (they usually have to move a nerve and it causes your shoulder to be impaired.  Mine has come back with exercise to about 90%.  The surgery itself is really no big deal.  I was surprised at how not painful it was and I had 4 removed and recovery was really quick.

    They couldn't radiate mine as they were in the original field but have put me on a chemo regimen that has not caused me any distress at all.

    Good luck and ask anything if I can help.  This should be an easy fix!!!

    Joe

  • phrannie51
    phrannie51 Member Posts: 4,716
    #66
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    jcortney said:

    Ok, just some input having been there

    The neck dissection is a pain in the butt (they usually have to move a nerve and it causes your shoulder to be impaired.  Mine has come back with exercise to about 90%.  The surgery itself is really no big deal.  I was surprised at how not painful it was and I had 4 removed and recovery was really quick.

    They couldn't radiate mine as they were in the original field but have put me on a chemo regimen that has not caused me any distress at all.

    Good luck and ask anything if I can help.  This should be an easy fix!!!

    Joe

    I know about the shoulder thing....

    and having to learn to raise your arm...exercises etc....after reading on here for almost 4 years....I keep trying not to think about it, but every time I throw a ball for the dogs, I realize that's not going to be happening for a while. 

    I have doubts about radiation, myself....these two nodes are down by my collarbone....this part of my body wasn't in the direct field of rads, but was most certainly caught fallout from previous rads.  I've been lucky, I think that my jaw opens wide, and my neck moves just the way it's supposed to....I got off easy compared to others. 

    I'm still feeling blessed that these two tiny nodes are the only places that cancer was found.  Too bad they aren't doing it before halloween....I could go as myself and have a built in costume!! Mrs. Frankenstein!!  LOL.

    p

  • rcaulder
    rcaulder Member Posts: 70
    #67
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    Happening for awhile?

    Well Phrannie, just learn to throw with your left hand.  The puppy won't mind.

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #68
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    rcaulder said:

    Happening for awhile?

    Well Phrannie, just learn to throw with your left hand.  The puppy won't mind.

    Happy

    -to hear the good news, Phrannie. Hopefully the stragglers will be kicked-out of you with what they have planned, and this was only what they're telling you it is. Full speed ahead in the Positive.

    kcass 

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #69
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    phrannie51 said:

    ENT called tonight....

    I almost didn't answer the phone, except that 1)  the ENT never calls in scan results...and 2) I just had the scan this morning, so I felt safe answering the phone.  Aw.....but he DID have the scan results....and my knees went weak, and I almost told him I didn't want to hear over the phone. 

    Results:  The only cancer found in the entire PET scan was two lymph nodes under my clavicle....nothing in the nasopharnyx, nothing anywhere else in my head, not in the lungs, not in the liver....nothing anywhere else.  Ok, ok....so it's still cancer, but it's treatable....The tumor board meets next Tues, and my case is getting looked at....Depending on where the last rads ended, I might be in for some rads (they just put in a SBRT machine at this hospital just this year....that's the kind of rads hwt (Candi) got at Mayo....or I may not.....Oncologist may suggest more chemo, or may not....the only thing for sure is a neck dissection in November.

    I love this new ENT...I loved my old one, too....but this guy has called me twice, tells me what's going on, and is a gentle soul t'boot....I asked him how I could have cancer cells in my nodes, but no where else.....he said they may have been laying dormant..sick but not dead from the former treatment....and have just now come to life.  I am SO grateful it's not NPC again....

    I love you guys....I don't know what I would have done without you this last week.

    p

    Sending Good Vibes your way

    I have not been on CSN for several weeks, so read your thread from your first post to 10/20 just now.  Your first one scared the crap out of me, but felt a lot better with what the new ENT finally told you.  In a way, I'm glad I read the whole thread at once--I would have been sweating bullets for you the whole time if I had to wait for each new post.

    I know you are still facing a lot of treatments and worries, but please know that you have a lot of CSN friends sending you Good Vibes every step of the way.  You have been on the other end for many of us, and now it's our turn to return the love and support.

    Mike

     

     

  • jtl
    jtl Member Posts: 456
    #70
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    phrannie51 said:

    I know about the shoulder thing....

    and having to learn to raise your arm...exercises etc....after reading on here for almost 4 years....I keep trying not to think about it, but every time I throw a ball for the dogs, I realize that's not going to be happening for a while. 

    I have doubts about radiation, myself....these two nodes are down by my collarbone....this part of my body wasn't in the direct field of rads, but was most certainly caught fallout from previous rads.  I've been lucky, I think that my jaw opens wide, and my neck moves just the way it's supposed to....I got off easy compared to others. 

    I'm still feeling blessed that these two tiny nodes are the only places that cancer was found.  Too bad they aren't doing it before halloween....I could go as myself and have a built in costume!! Mrs. Frankenstein!!  LOL.

    p

    Sorry to hear about this.

    I rarely check the forum but I am glad I did even if the news was not good, but it sounds like it is getting better.  I am not surprised that the CT scan did not pick up the cancer because when I was first diagnosed it didn't for me either.  A subsequent PET scan did find it, but of course I new I had cancer because it was in one of my lymph nodes.  Having said that I just had a PET in my pelvic area that indicated that I have bladder cancer, unrelated to the scchn.  Surgery next week followed by several weeks of chemo delivered directly to the bladder via a catheter so hopefully no side effects.  I am also going to get a chest CT since Medicare will pay for one under there new guidlines if you were a previous smoker.  I don't expect to find anything but want to be proactive.  I am now at the 4 year mark since I finished treatment for scchn.  I also think I am approaching a cancer record of sorts.  In the span of 45 years I have had melanoma, prosate cancer, scchn and now bladder cancer.  Anyway I wish you the best.

    John

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #71
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    phrannie51 said:

    I know about the shoulder thing....

    and having to learn to raise your arm...exercises etc....after reading on here for almost 4 years....I keep trying not to think about it, but every time I throw a ball for the dogs, I realize that's not going to be happening for a while. 

    I have doubts about radiation, myself....these two nodes are down by my collarbone....this part of my body wasn't in the direct field of rads, but was most certainly caught fallout from previous rads.  I've been lucky, I think that my jaw opens wide, and my neck moves just the way it's supposed to....I got off easy compared to others. 

    I'm still feeling blessed that these two tiny nodes are the only places that cancer was found.  Too bad they aren't doing it before halloween....I could go as myself and have a built in costume!! Mrs. Frankenstein!!  LOL.

    p

    My neck dissection

    has only made my skin feel "tight".  I have full range of my shoulders and arms, but I had to stretch a lot during recovery.  I started to hunch over when I stood, and my nurse pushed me up against the wall so my back was flat against it and told me to do that each day while lifting my arms.  I throw the ball like crazy to my pups and so will you!!!!  Kick those nodes to the curb and heal up!  

     

    I just told my hubby that I could darken my scars with red face paint, put on a torn Myrtle Beach tshirt and be a shark bite victim for Halloween! LOL 

  • sunshine_64
    sunshine_64 Member Posts: 50
    #72
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    Kent Cass said:

    Happy

    -to hear the good news, Phrannie. Hopefully the stragglers will be kicked-out of you with what they have planned, and this was only what they're telling you it is. Full speed ahead in the Positive.

    kcass 

    Good luck to Phrannie & Update when you can

    Just logged on to see how old-timers from class of 2012 were doing, and found your posts.

    Wishing you the best - best doctors, best nurse advocate, and best outcome. Turn to us

    and post when you need us - it sure helped me through 2012....I am doing ok, some fibrosis

    and jaw pain, but NED since Sept 2012. Thinking good thoughts for you.

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #73
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    sunshine_64 said:

    Good luck to Phrannie & Update when you can

    Just logged on to see how old-timers from class of 2012 were doing, and found your posts.

    Wishing you the best - best doctors, best nurse advocate, and best outcome. Turn to us

    and post when you need us - it sure helped me through 2012....I am doing ok, some fibrosis

    and jaw pain, but NED since Sept 2012. Thinking good thoughts for you.

    Hi Phrannie

    You got this! Please read my mom's story. I pray and I know you will be ok.

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #74
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  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #75
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    phrannie51 said:

    Back when I was first diagnosed....

    I met a girl on this forum from my area....she was immensely helpful to me then.  We've remained friends since, and the other night I messaged her on FB and told her what was up.  Because she's an RN she asked if I wanted her to advocate for me, and I said yes.  So....just in this one day, my PET scan has been moved up to tomorrow instead of having to wait until the 27th....and the appointment with the Oncologist has been moved to the 28th from November 2nd.  Thank you Staceya!! 

    Knowing that all of you guys have my back is comforting, too....you don't know how much that means to me.

    p

     

     

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