how are you guys, longtermsurvivor, kteacher, Hwt, luv4lacrosse

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joannaw81
joannaw81 Member Posts: 185 Member
in Head and Neck Cancer #1

Hello guys, did not see any recent posts from you in awhile. Just wanted to see how you guys are doing.

To all on this forum: I always have you in my prayers although I do not post that often. Happy New Year to everyone!

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  • KTeacher
    KTeacher Member Posts: 1,103
    #2
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    Still here

    I am still here, for which I am thankful.  I am on palliative chemo, cancer is scattered in maxillary sinus and 3 lymph nodes.  No surgery or radiation available.  I will have a PET scan next month, if insurance approves to see if chemo is helping.  I have lost 9 pounds since Dec. 19 when I started, I have been given a med to increase appetite (which I find humorous, I've been on diets since I was 12 years old).  I try to respond to posts that I think I can be helpful with.  Thank you for asking.

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #3
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    KTeacher said:

    Still here

    I am still here, for which I am thankful.  I am on palliative chemo, cancer is scattered in maxillary sinus and 3 lymph nodes.  No surgery or radiation available.  I will have a PET scan next month, if insurance approves to see if chemo is helping.  I have lost 9 pounds since Dec. 19 when I started, I have been given a med to increase appetite (which I find humorous, I've been on diets since I was 12 years old).  I try to respond to posts that I think I can be helpful with.  Thank you for asking.

    thanks for responding KTeacher

     Will keep you in my preyers KTeacher. Anyone else?

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
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    joannaw81 said:

    thanks for responding KTeacher

     Will keep you in my preyers KTeacher. Anyone else?

    thanks for asking

    I'm still here, though not as often as I have been.  Doing fairly well.   Weight is way down, beyond that I've got reasonably good pain control and am figuring out how to use anciillary healthcare personelle to help fill in around the edges as I slowly do my thing.  Gosh I am a year now from my final diagnosis.  I guess that still gives me the right to claim the title of "longtermsurvivor."

    Just a note to those of you who eventually head down this path.  Adequate pain control is important.   I've had to kind of use several  different approaches to get this done.  My oncologist is not, perhaps the world's leading expert on this aspect of things.  But between him, his nurse, the pharmacist who  is right in the oncology unit, a friend of mine who specializes in addiction medicine, and the hospice people, I've about got things figured out.  If I've made a single mistake in selecting my care, its been being a little late getting the hospice people involved.  In part, this is because my wife used to be a geriatric social worker, years ago.  And her understanding of the services provided and the time frame to solicit their help has had some catching up to do.

     

    best

     

    Pat

  • lornal
    lornal Member Posts: 428
    #5
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    longtermsurvivor said:

    thanks for asking

    I'm still here, though not as often as I have been.  Doing fairly well.   Weight is way down, beyond that I've got reasonably good pain control and am figuring out how to use anciillary healthcare personelle to help fill in around the edges as I slowly do my thing.  Gosh I am a year now from my final diagnosis.  I guess that still gives me the right to claim the title of "longtermsurvivor."

    Just a note to those of you who eventually head down this path.  Adequate pain control is important.   I've had to kind of use several  different approaches to get this done.  My oncologist is not, perhaps the world's leading expert on this aspect of things.  But between him, his nurse, the pharmacist who  is right in the oncology unit, a friend of mine who specializes in addiction medicine, and the hospice people, I've about got things figured out.  If I've made a single mistake in selecting my care, its been being a little late getting the hospice people involved.  In part, this is because my wife used to be a geriatric social worker, years ago.  And her understanding of the services provided and the time frame to solicit their help has had some catching up to do.

     

    best

     

    Pat

    doing well

    Its good to hear you are doing well.  I think about you often, as you were one of the folks that helped me keep going during my 2nd diagnosis and treatment.  I am a year out now, and doing okay.  Ups and downs - still getting used to this new life. 

     

    Lorna 2007 & 2014

  • hwt
    hwt Member Posts: 2,328 Member
    #6
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    lornal said:

    doing well

    Its good to hear you are doing well.  I think about you often, as you were one of the folks that helped me keep going during my 2nd diagnosis and treatment.  I am a year out now, and doing okay.  Ups and downs - still getting used to this new life. 

     

    Lorna 2007 & 2014

    I am here too

    Thank you for asking and for keeping us all in your prayers.  I have been getting PET scans quarterly, last one still clean, next one 02/23. I see surgeon tomorrow to schedule removal of a piece of the fibula that was put in to replace my jaw 3 years ago. Titanium was removed in Sept. I was scheduled for this in Nov. but my husband had a serious stroke the end of Oct. so that has taken prioirty in my life. He will likely move from rehab to skilled nursing this week. I pray that I can heal and bring him home with some in-home care. I have retired, always thought I would go crazy with nothing to do but the days fly by with never enough time to get everything I want to done.  I don't visit CSN daily but try not to be away too long. I keep everyone in my prayers.

    God Bless,

    Candi 

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #7
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    Still here

    im still here but not doing well. Just got the news yesterday that I had to stop the only chemo I had left as one of my lung tumors grew from 1.4 to 1.9. Dr will consider outing me back on Taxotere as it worked the best on my tumors and only had to stop as it caused severe pleural Efflusion, which I have now and the fluid on my right side is full of cancer. Doc is sending my pathology of for a test that does testing at the molecular level to see if they can can match me up for another drug. They are also looking at a clinical trial in San Antonio.

    long story short, I'm coming to the end of my battle.

    Best

    Mike

  • hwt
    hwt Member Posts: 2,328 Member
    #8
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    luv4lacrosse said:

    Still here

    im still here but not doing well. Just got the news yesterday that I had to stop the only chemo I had left as one of my lung tumors grew from 1.4 to 1.9. Dr will consider outing me back on Taxotere as it worked the best on my tumors and only had to stop as it caused severe pleural Efflusion, which I have now and the fluid on my right side is full of cancer. Doc is sending my pathology of for a test that does testing at the molecular level to see if they can can match me up for another drug. They are also looking at a clinical trial in San Antonio.

    long story short, I'm coming to the end of my battle.

    Best

    Mike

    Mike

    I am so sorry to hear that you are struggling. I will pray that you find a successful trial. Please know that we are here to support you.

    Hugs,

    Candi 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #9
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    Hope

    Mike,

    Be strong my friend.

    Thoughts and prayers for you.

    Matt

  • Guzzle
    Guzzle Member Posts: 710
    #10
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    CivilMatt said:

    Hope

    Mike,

    Be strong my friend.

    Thoughts and prayers for you.

    Matt

    God Bless You

    Mike thinking of you buddy

  • donfoo
    donfoo Member Posts: 1,771 Member
    #11
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    luv4lacrosse said:

    Still here

    im still here but not doing well. Just got the news yesterday that I had to stop the only chemo I had left as one of my lung tumors grew from 1.4 to 1.9. Dr will consider outing me back on Taxotere as it worked the best on my tumors and only had to stop as it caused severe pleural Efflusion, which I have now and the fluid on my right side is full of cancer. Doc is sending my pathology of for a test that does testing at the molecular level to see if they can can match me up for another drug. They are also looking at a clinical trial in San Antonio.

    long story short, I'm coming to the end of my battle.

    Best

    Mike

    You are a true warrior

    I love your picture. It remindes me of the way you fight this beast. The defiant pose is perfect. I feel sad hearing the update. Hope the trial in San Antioio is a fit. don

  • Greg53
    Greg53 Member Posts: 849
    #12
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    Guzzle said:

    God Bless You

    Mike thinking of you buddy

    Bro'

    Mike,

    I know you always provide inspiriation to those who know you well and you are a hero to many on this site for your combativeness and on-going spirited fight.  To me, you're simply my FNC buddy!

    Sending positive thoughts and big-time Mojo!

    Greg

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #13
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    donfoo said:

    You are a true warrior

    I love your picture. It remindes me of the way you fight this beast. The defiant pose is perfect. I feel sad hearing the update. Hope the trial in San Antioio is a fit. don

    PICTURE

    Not that big anymore, but still go to the gym 4-6 days a week, I keep it so I can still stay motivated.

    My ONCO here in Texas has already sent my info off regarding the clinical trial in SA, and between Siteman Cancer Center in STL and my team here, they are going to send all of my pathology, cell type ETC off to a place that does "Next Gen Sequencing" to see if there is another CA PT just like me who is making progress on some type of drug we hace not tried. 

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #14
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    Greg53 said:

    Bro'

    Mike,

    I know you always provide inspiriation to those who know you well and you are a hero to many on this site for your combativeness and on-going spirited fight.  To me, you're simply my FNC buddy!

    Sending positive thoughts and big-time Mojo!

    Greg

    THANKS

    This site is like Russian Roulette, hadent posted in a couple of months at least, and then read your post about Pat. I used to seek him out for advice all of the time and knew you had gotten to know him persaonally. That was just a kick in the balls!! Then to make thinks worse, my wife's dad calls her last night and tells her he has been diagnosed with some form of Leukemia. He is 74 and starting some Chemo Pills but needs a Stem Cell Transplant to even have a chance.

    I lost your personal e mail address, tried to send you pics of the home we built here in texas and your work e mail kicked it back.

     

    You are a true friend, and I will never forget you!!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #15
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    luv4lacrosse said:

    Still here

    im still here but not doing well. Just got the news yesterday that I had to stop the only chemo I had left as one of my lung tumors grew from 1.4 to 1.9. Dr will consider outing me back on Taxotere as it worked the best on my tumors and only had to stop as it caused severe pleural Efflusion, which I have now and the fluid on my right side is full of cancer. Doc is sending my pathology of for a test that does testing at the molecular level to see if they can can match me up for another drug. They are also looking at a clinical trial in San Antonio.

    long story short, I'm coming to the end of my battle.

    Best

    Mike

    man, Mike, this is so sad. 

    man, Mike, this is so sad.  hearing this type of news always takes a piece of my heart and leaves a hole.  i will be praying for the trail in SA to be good for you.  you've fought hard so don't stop now, this is just another test to see if you can hang, show cancer YOU CAN.  i'm sorry about this Mike and I pray for you to have strength and for God to comfort you when you are tired and want to give up.  please know that we are all here for you anytime you need us!  sending you a biiiiiiiiiiiiiiiggggggggggggggg cyber hug.

    God bless you and your family,

    dj

  • jcortney
    jcortney Member Posts: 503
    #16
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    luv4lacrosse said:

    THANKS

    This site is like Russian Roulette, hadent posted in a couple of months at least, and then read your post about Pat. I used to seek him out for advice all of the time and knew you had gotten to know him persaonally. That was just a kick in the balls!! Then to make thinks worse, my wife's dad calls her last night and tells her he has been diagnosed with some form of Leukemia. He is 74 and starting some Chemo Pills but needs a Stem Cell Transplant to even have a chance.

    I lost your personal e mail address, tried to send you pics of the home we built here in texas and your work e mail kicked it back.

     

    You are a true friend, and I will never forget you!!

    Man, do I understand

    Mike,

    Unfortunately you and I are in a similar place, just different beasties swimming around.  I'm in the last legs myself with only a trial to look forward to.  So, brother in spirit, I understand what you are feeling and going through.  I'm in Dallas and if you are ever up this way, give me a shout.

    As an aside, Pat going kicked my a$$ too.  He was an amazing guy that was always around to help me out when I was felling my worst.  I hope I can go out with half the class and courage.

    Joe Cortney

     

  • Greg53
    Greg53 Member Posts: 849
    #17
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    luv4lacrosse said:

    THANKS

    This site is like Russian Roulette, hadent posted in a couple of months at least, and then read your post about Pat. I used to seek him out for advice all of the time and knew you had gotten to know him persaonally. That was just a kick in the balls!! Then to make thinks worse, my wife's dad calls her last night and tells her he has been diagnosed with some form of Leukemia. He is 74 and starting some Chemo Pills but needs a Stem Cell Transplant to even have a chance.

    I lost your personal e mail address, tried to send you pics of the home we built here in texas and your work e mail kicked it back.

     

    You are a true friend, and I will never forget you!!

    email

    Mike,

    Weird, on the emails.  Lost yours as well.  Tried one, but it must have been an old one.  Retiring this week from work.  Last of the big jobs is getting completed.  Thought I'd go out on top.  Will PM you with contact info.

    Greg

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