round two

vinny59
vinny59 Member Posts: 1,036 Member
edited March 2014 in Head and Neck Cancer #1
Wow, what can I say the last time I was here was about three years ago answering questions from newbies on what to expect from treatment, recovery ect ect.....Low and behold my Ocologist called me and said they found two hot spot's on my PET scan, one in the back and one in my chest..... funny thing is I was diagnosed with a unknown primary of the head and neck, branchial cleft cyst that turned out to be squamious cell carcinoma.Had 10 weeks of chemo and radiation. Any one have any experience of head and neck cancer showing up somewhere else? I'm having a brain scan on Friday.
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Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Vinny
    Don’t be afraid I been there three times hearing the doc tell me it’s back again, first time on the right side of my nasal passage, second time on the right side of my nasal passage & neck, third time on my left side of the nasal passage. I am now one big ball of radiation and chemo but I am still alive and doing well 5 years later. Hang in there my friend and you will get through this one again too.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    Hondo said:

    Hi Vinny
    Don’t be afraid I been there three times hearing the doc tell me it’s back again, first time on the right side of my nasal passage, second time on the right side of my nasal passage & neck, third time on my left side of the nasal passage. I am now one big ball of radiation and chemo but I am still alive and doing well 5 years later. Hang in there my friend and you will get through this one again too.

    Thanks Hondo,I keep saying
    Thanks Hondo,I keep saying just another bump in the road!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    vinny59 said:

    Thanks Hondo,I keep saying
    Thanks Hondo,I keep saying just another bump in the road!

    Bumpy Road
    Well said my friend a bumpy road it is. I meet a lady yesterday with the same type of NPC cancer I have. She got NPC when she was 44 and she is now 64 that is 20 years, she has all the same side affects I have and a few more, so now I too know what to expect up the bumpy road ahead.

    Take care
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #5
    Hondo said:

    Bumpy Road
    Well said my friend a bumpy road it is. I meet a lady yesterday with the same type of NPC cancer I have. She got NPC when she was 44 and she is now 64 that is 20 years, she has all the same side affects I have and a few more, so now I too know what to expect up the bumpy road ahead.

    Take care

    BUMPY ROAD
    good luck to you! stay strong.............. going for a MRI brain scan today, Monday it's my Oncologist to talk about my PET scan result's, going to be a longggggg weekend... hahahaha
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    vinny59 said:

    BUMPY ROAD
    good luck to you! stay strong.............. going for a MRI brain scan today, Monday it's my Oncologist to talk about my PET scan result's, going to be a longggggg weekend... hahahaha

    MRI
    I will keep you in my prayers today, all the best to you
  • rozaroo
    rozaroo Member Posts: 665
    #7
    Hondo said:

    MRI
    I will keep you in my prayers today, all the best to you

    Vinny!

    You are in my prayer's also!
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #8
    rozaroo said:

    Vinny!

    You are in my prayer's also!

    bumpy road just took a wrong turn
    Thanks guy's for the prayers, always means alot, got a copy of my PET scan does not look that great, It reads a 1.4 cm lymph node in the azygoesophageal recess, SUV of 5.8, In the Osseous focus of hypermetabolism in the left ilium SUV of 6.6, focal metabolism in the vertebral body, SUV of 6.6,and an ill defined area of metabolism along the upper sternum.I'm not a Oncologist but when the impression of my scan reads, Interval develpment of osseous metastasis, that don't sound good. Going Monday to get the low down, anyone have any thoughts, bad or good is welcome......... thanks!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    vinny59 said:

    bumpy road just took a wrong turn
    Thanks guy's for the prayers, always means alot, got a copy of my PET scan does not look that great, It reads a 1.4 cm lymph node in the azygoesophageal recess, SUV of 5.8, In the Osseous focus of hypermetabolism in the left ilium SUV of 6.6, focal metabolism in the vertebral body, SUV of 6.6,and an ill defined area of metabolism along the upper sternum.I'm not a Oncologist but when the impression of my scan reads, Interval develpment of osseous metastasis, that don't sound good. Going Monday to get the low down, anyone have any thoughts, bad or good is welcome......... thanks!

    Thoughts and Prayers
    Thoughts and Prayers with you....
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    Skiffin16 said:

    Thoughts and Prayers
    Thoughts and Prayers with you....

    Vinny
    The reoccurance thing is what we all a wary of, vinny, and I'm sorry to hear of your's. I'm only 13-months, post-treatment. Would appreciate info on your initial treatment- details of the C&R you were given. A few others have recently posted of the C showing-up in places other than were treated with the rads; and, though they were also Chemo'd, it has come back elsewhere. Again, would appreciate the info from you.

    Hey- hopes and Prayers are with you. You been thru H&N, so you know where it takes you, like we all do. They say H&N is just about the roughest, though the survival rate is just about the best. Keep that in mind, going forward. Same with all of us, vinny: time to roll-up the shirtsleeves, take the belt in a notch and re-tie the shoestrings, and then find that mean-kinda grin to wear for times to come. You been there, so you know it.

    Hope you'll stay active on this forum; and, again, would greatly appreciate the info.

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    vinny59 said:

    bumpy road just took a wrong turn
    Thanks guy's for the prayers, always means alot, got a copy of my PET scan does not look that great, It reads a 1.4 cm lymph node in the azygoesophageal recess, SUV of 5.8, In the Osseous focus of hypermetabolism in the left ilium SUV of 6.6, focal metabolism in the vertebral body, SUV of 6.6,and an ill defined area of metabolism along the upper sternum.I'm not a Oncologist but when the impression of my scan reads, Interval develpment of osseous metastasis, that don't sound good. Going Monday to get the low down, anyone have any thoughts, bad or good is welcome......... thanks!

    Hi Vinny


    I know it does not sound too good but there is always hope, I been there three times with my NPC and I am still here to tell my story and give others hope. We know the road is bumpy, long and hard but you can do it no matter what the Oncol man tells you on Monday. Stay strong and keep posting we will be right here to help you through.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #12
    Kent Cass said:

    Vinny
    The reoccurance thing is what we all a wary of, vinny, and I'm sorry to hear of your's. I'm only 13-months, post-treatment. Would appreciate info on your initial treatment- details of the C&R you were given. A few others have recently posted of the C showing-up in places other than were treated with the rads; and, though they were also Chemo'd, it has come back elsewhere. Again, would appreciate the info from you.

    Hey- hopes and Prayers are with you. You been thru H&N, so you know where it takes you, like we all do. They say H&N is just about the roughest, though the survival rate is just about the best. Keep that in mind, going forward. Same with all of us, vinny: time to roll-up the shirtsleeves, take the belt in a notch and re-tie the shoestrings, and then find that mean-kinda grin to wear for times to come. You been there, so you know it.

    Hope you'll stay active on this forum; and, again, would greatly appreciate the info.

    Believe

    kcass

    original treatment
    Hey Kent, thanks for the prayers, my orginal treatment full targeted neck radiation for nine weeks, along with 5 weeks of Cisplatin. Can't remember the dose, but I know it was strong because I was admitted to the hospital when I recieved it,a week at a time ( oh how I hated that! ). They never found the primary, removed one tonsil nothing showed up. Hey, you learn to try to educate yourself as much as possible, but in the end it's not in our hands......Vinny
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #13
    Hondo said:

    Hi Vinny


    I know it does not sound too good but there is always hope, I been there three times with my NPC and I am still here to tell my story and give others hope. We know the road is bumpy, long and hard but you can do it no matter what the Oncol man tells you on Monday. Stay strong and keep posting we will be right here to help you through.

    hi
    thanks again........
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #14
    rozaroo said:

    Vinny!

    You are in my prayer's also!

    hi
    Thanks!!!!
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #15
    vinny59 said:

    hi
    Thanks!!!!

    Thank You
    Do thank you for the info. Did they just do the rads to the neck? Hondo and I are NPC, and the rads were H&N. With me, it was 20 places/session. And my mouth really was a trainwreck. Maybe if they only did the rads to you in a few places, then that might've lead to the C coming back. I don't kow- just wondering. Do know that it sounds like your Chemo was strong, if you were hospitalized. And, that does answer my question about the Chemo- I also got Cisplatin and FU5 for two 96-hour sessions, but my only hospital stay was at the start of the second-week after the last of those 96-hour times. Got real sick. And, yeah, I'm unknown Primary, too, Vinny. ENT has told me that will always be some cause for concern. So, maybe your experience is a good lesson to all of us with unknowns. And I, along with all the others, I'm sure, truly do thank you for revealing this. I really do.

    I ditto Hondo's last post, Vinny. Keep us informed.

    Believe

    kcass
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #16
    Kent Cass said:

    Thank You
    Do thank you for the info. Did they just do the rads to the neck? Hondo and I are NPC, and the rads were H&N. With me, it was 20 places/session. And my mouth really was a trainwreck. Maybe if they only did the rads to you in a few places, then that might've lead to the C coming back. I don't kow- just wondering. Do know that it sounds like your Chemo was strong, if you were hospitalized. And, that does answer my question about the Chemo- I also got Cisplatin and FU5 for two 96-hour sessions, but my only hospital stay was at the start of the second-week after the last of those 96-hour times. Got real sick. And, yeah, I'm unknown Primary, too, Vinny. ENT has told me that will always be some cause for concern. So, maybe your experience is a good lesson to all of us with unknowns. And I, along with all the others, I'm sure, truly do thank you for revealing this. I really do.

    I ditto Hondo's last post, Vinny. Keep us informed.

    Believe

    kcass

    rads
    It was targeted just on my neck, mainly where the tumor was removed, believe it or not I still have the Mask! It's hanging in the basement some sort of a momento that I got through it..........I will talk to you soon.....
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    vinny59 said:

    rads
    It was targeted just on my neck, mainly where the tumor was removed, believe it or not I still have the Mask! It's hanging in the basement some sort of a momento that I got through it..........I will talk to you soon.....

    Vinny
    Take care for now my friend and we will be waiting to hear from you and will keep the prayers going in your behalf
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #18
    vinny59 said:

    rads
    It was targeted just on my neck, mainly where the tumor was removed, believe it or not I still have the Mask! It's hanging in the basement some sort of a momento that I got through it..........I will talk to you soon.....

    again
    Vinny, I just wanted to say I'm sorry you may have to go thru it again but know that we are all praying for you. Be strong and hang in there, we're all pulling for you!! Best wishes.
    God Bless,
    Debbie
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #19
    debbiejeanne said:

    again
    Vinny, I just wanted to say I'm sorry you may have to go thru it again but know that we are all praying for you. Be strong and hang in there, we're all pulling for you!! Best wishes.
    God Bless,
    Debbie

    thanks!
    thank you Debbie!
  • catya88
    catya88 Member Posts: 50
    #20
    vinny59 said:

    thanks!
    thank you Debbie!

    Cancer spreading
    Hi Vinny

    My boyfriend had 7 weeks radiation and chemo and when he finished and they did his PET scan it had gone to his bones, lungs and skin. He just started his second round as well.

    I'm sorry that yours has spread. I have high hopes this secod round will wipe it out or at least control it.

    My prayes are with you - Cathy
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #21
    catya88 said:

    Cancer spreading
    Hi Vinny

    My boyfriend had 7 weeks radiation and chemo and when he finished and they did his PET scan it had gone to his bones, lungs and skin. He just started his second round as well.

    I'm sorry that yours has spread. I have high hopes this secod round will wipe it out or at least control it.

    My prayes are with you - Cathy

    Cancer spreading
    sorry to hear that,I will keep him in my prayers, I'm still going though the battery of test required, thinking the worse, hoping for the best! I was clean for three years......

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