NPC

anselmo cavosora
anselmo cavosora Member Posts: 6
edited March 2014 in Long-Term Effects of Treatment #1
I had cancer-NPC-treatment twenty years ago when I was only 44 years oid. When I came out of the hospital after the two one-week sessions of chemo and a month of radiation, I feel dizzy,head burning feeling like a melting candlewax,weak,tired, just about everything you can feel in your head not normal anymore,my eyes,ears,nose, and mouth, and i get very irritable even on small things,easily enraged by things contrary to my likes,ideas and beliefs, and very intolerant. After one or two months during a consultation with my oncologist, he told me that I am healed and a miracle has happened. I could not believe him! And I said, " Doc, are you telling me I am cured? How come I feel worse than when I came in to the hospital for treatment?" And he told me that that's what i will feel for the rest of my life and he even put it down on record which I still have until now.

I have survived and I am here now 64 years old, after twenty years still struggling how to survive from the side effects of the treatments. Every little activity is a struggle, like combing my hair,shaving,walking,bathing,even chewing food or eating. For no reason at all my head will suddenly get painful even whether I am resting,sleeping,lying down,or watching tv. Now I have completely lost my sense of hearing and my sight is slowly getting blurry.And I could not walk straight like a drunk. Is it worth it all?

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi anselmo
    I too an NPC and there are a lot of us on the Head and Neck of this same site. Glad to meet you and know that there is someone who has lived as long as you have. My Cancer started in Oct of 2002 and I was treated until feb of 2003 then the worse nightmare in my life came in Nov 2004 it was back. I was treatment again with more radiation and chemo until March of 2005. All was well until June of 2006 when it came back and I refused any more treatment. I am still alive today and do as good as expected. My Oncl doc said he can’t believe I am still walking and working everyday. I too like you live with a lot of pain in the head, ears, Jaw, face, neck, and eyes. I always wonder if it is because the cancer is back or maybe I just image it is sometimes because I fell so bad.

    Please join us on the Head and Neck Cancer I know Kent would love to hear of someone who is a 20 years survivor of NPC.

    Glad to meet you and glad to be your friend.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #3
    Yes anselmo
    I join with Hondo is encouraging you to make posts in the Head and Neck forum on this website. There are a number of us who are NPC and make frequent posts. And, from my perspective as an 18-month survivor (13-months post-treatment), your 20 years does give me cause to be optimistic.

    "Is it worth it all?" Only you can answer that, anselmo. Hondo and I, along with a number of others, are Christians who have a very large Spiritual faith- our's being with Jesus, and God. Of course, none of us wanted to get C, but none of us blame the Lord. It just happens, and we fight the battle with our med teams, and our faith is only strengthened by the ordeals of our battles. I would hope you can find appreciation in all that's been good over your last 20 years, and the answer to the question you pose is to the affirmative.

    You and I have a similarity, anselmo, but I have the advantage of having gone thru my Chemo in early-09, instead of so long ago- as you did. The current treatments for C with Chemo&Rad have new drugs that help the body with the side-effects; and, now, so much more is known in how to better treat people with both Chemo and Rad. Our similarity: I, too, was mega-dosed on the Chemo (Cisplatin and FU5) by carrying two pumps that continuously pumped those two meds into me for 96-hours in the first 4 days of week #1 and week #4. That means I got 4-weeks of those potent two Chemo drugs pumped into me in each of the 4 days of those two sessions. You say you had two one-week sessions of Chemo, so there is the similarity. Most people, now, get a once-a-week drip that lasts an hour; or gets two drip sessions, then wait a couple weeks before the next two drip session. And most get the rads while they are getting their Chemo, as did I.

    Thus, maybe I can realize more than most what you went thru. Janymac, in England, may also. Things went south on me so bad that I was on morphine and ice, starting early in week #2. My morph&ice time was weeks #2,3,5 and 6- all in the aftermath of the Chemo pumps, and included the first 4 days of week #6 in the hospital with fever and infection. I got all my nutrition via my PEG feeding tube for 7 weeks. And, I was too sick to be able to go thru the rads in weeks #5 and #6. My mouth was a trainwreck, with the many sores and scalding of my tongue in numerous places. And, yes, I know it most certainly was worse for you way back when.

    Thing is, anselmo, my recovery has been better than the great majority of other H&N patients. Perhaps with my 09 treatment the saying- the greater the pain, the greater the gain, holds true. I returned to work a month after my last rad session, and had gained back all the weight I lost in treatment some 6-months later, and can now eat most anything I want. It's just that you got the NPC many years too soon, anselmo, and I am truly sorry about that, for you. Others, like Hondo, were treated differently, or a number of years ago, and their recovery has not been as good as mine has, by no fault of their own. The advances in treatment of C are significant. Hawvet is 13-years, but your 20 will make you the NPC vet with the most tenure.

    A number of those who post in the H&N are in, or just completed, treatment. We share information, advice, experiences and support for each other- we are survivors, as are you.
    And you will be most welcome on the H&N.

    Believe

    kcass
  • anselmo cavosora
    anselmo cavosora Member Posts: 6
    #4
    Kent Cass said:

    Yes anselmo
    I join with Hondo is encouraging you to make posts in the Head and Neck forum on this website. There are a number of us who are NPC and make frequent posts. And, from my perspective as an 18-month survivor (13-months post-treatment), your 20 years does give me cause to be optimistic.

    "Is it worth it all?" Only you can answer that, anselmo. Hondo and I, along with a number of others, are Christians who have a very large Spiritual faith- our's being with Jesus, and God. Of course, none of us wanted to get C, but none of us blame the Lord. It just happens, and we fight the battle with our med teams, and our faith is only strengthened by the ordeals of our battles. I would hope you can find appreciation in all that's been good over your last 20 years, and the answer to the question you pose is to the affirmative.

    You and I have a similarity, anselmo, but I have the advantage of having gone thru my Chemo in early-09, instead of so long ago- as you did. The current treatments for C with Chemo&Rad have new drugs that help the body with the side-effects; and, now, so much more is known in how to better treat people with both Chemo and Rad. Our similarity: I, too, was mega-dosed on the Chemo (Cisplatin and FU5) by carrying two pumps that continuously pumped those two meds into me for 96-hours in the first 4 days of week #1 and week #4. That means I got 4-weeks of those potent two Chemo drugs pumped into me in each of the 4 days of those two sessions. You say you had two one-week sessions of Chemo, so there is the similarity. Most people, now, get a once-a-week drip that lasts an hour; or gets two drip sessions, then wait a couple weeks before the next two drip session. And most get the rads while they are getting their Chemo, as did I.

    Thus, maybe I can realize more than most what you went thru. Janymac, in England, may also. Things went south on me so bad that I was on morphine and ice, starting early in week #2. My morph&ice time was weeks #2,3,5 and 6- all in the aftermath of the Chemo pumps, and included the first 4 days of week #6 in the hospital with fever and infection. I got all my nutrition via my PEG feeding tube for 7 weeks. And, I was too sick to be able to go thru the rads in weeks #5 and #6. My mouth was a trainwreck, with the many sores and scalding of my tongue in numerous places. And, yes, I know it most certainly was worse for you way back when.

    Thing is, anselmo, my recovery has been better than the great majority of other H&N patients. Perhaps with my 09 treatment the saying- the greater the pain, the greater the gain, holds true. I returned to work a month after my last rad session, and had gained back all the weight I lost in treatment some 6-months later, and can now eat most anything I want. It's just that you got the NPC many years too soon, anselmo, and I am truly sorry about that, for you. Others, like Hondo, were treated differently, or a number of years ago, and their recovery has not been as good as mine has, by no fault of their own. The advances in treatment of C are significant. Hawvet is 13-years, but your 20 will make you the NPC vet with the most tenure.

    A number of those who post in the H&N are in, or just completed, treatment. We share information, advice, experiences and support for each other- we are survivors, as are you.
    And you will be most welcome on the H&N.

    Believe

    kcass

    NPC
    Yes,Kent surviving twenty years in pain and struggles is a miracle in itself. I've always believed that we have a next life and a better one at that, awaiting for us all. Why God has kept me all these years in this life enveloped in pain and struggles is constantly on my mind. Sometimes I can only pray and ask him to take me now to his kingdom, but my newlyfound family has given me inspiration and motivation to go on,to move on and continue appreciating whatever is left of my miraculous life.
  • anselmo cavosora
    anselmo cavosora Member Posts: 6
    #5
    Hondo said:

    Hi anselmo
    I too an NPC and there are a lot of us on the Head and Neck of this same site. Glad to meet you and know that there is someone who has lived as long as you have. My Cancer started in Oct of 2002 and I was treated until feb of 2003 then the worse nightmare in my life came in Nov 2004 it was back. I was treatment again with more radiation and chemo until March of 2005. All was well until June of 2006 when it came back and I refused any more treatment. I am still alive today and do as good as expected. My Oncl doc said he can’t believe I am still walking and working everyday. I too like you live with a lot of pain in the head, ears, Jaw, face, neck, and eyes. I always wonder if it is because the cancer is back or maybe I just image it is sometimes because I fell so bad.

    Please join us on the Head and Neck Cancer I know Kent would love to hear of someone who is a 20 years survivor of NPC.

    Glad to meet you and glad to be your friend.

    NPC
    Hondo,if you do internet,let's have a chat in Yahoo Messenger.
  • anselmo cavosora
    anselmo cavosora Member Posts: 6
    #6
    Kent Cass said:

    Yes anselmo
    I join with Hondo is encouraging you to make posts in the Head and Neck forum on this website. There are a number of us who are NPC and make frequent posts. And, from my perspective as an 18-month survivor (13-months post-treatment), your 20 years does give me cause to be optimistic.

    "Is it worth it all?" Only you can answer that, anselmo. Hondo and I, along with a number of others, are Christians who have a very large Spiritual faith- our's being with Jesus, and God. Of course, none of us wanted to get C, but none of us blame the Lord. It just happens, and we fight the battle with our med teams, and our faith is only strengthened by the ordeals of our battles. I would hope you can find appreciation in all that's been good over your last 20 years, and the answer to the question you pose is to the affirmative.

    You and I have a similarity, anselmo, but I have the advantage of having gone thru my Chemo in early-09, instead of so long ago- as you did. The current treatments for C with Chemo&Rad have new drugs that help the body with the side-effects; and, now, so much more is known in how to better treat people with both Chemo and Rad. Our similarity: I, too, was mega-dosed on the Chemo (Cisplatin and FU5) by carrying two pumps that continuously pumped those two meds into me for 96-hours in the first 4 days of week #1 and week #4. That means I got 4-weeks of those potent two Chemo drugs pumped into me in each of the 4 days of those two sessions. You say you had two one-week sessions of Chemo, so there is the similarity. Most people, now, get a once-a-week drip that lasts an hour; or gets two drip sessions, then wait a couple weeks before the next two drip session. And most get the rads while they are getting their Chemo, as did I.

    Thus, maybe I can realize more than most what you went thru. Janymac, in England, may also. Things went south on me so bad that I was on morphine and ice, starting early in week #2. My morph&ice time was weeks #2,3,5 and 6- all in the aftermath of the Chemo pumps, and included the first 4 days of week #6 in the hospital with fever and infection. I got all my nutrition via my PEG feeding tube for 7 weeks. And, I was too sick to be able to go thru the rads in weeks #5 and #6. My mouth was a trainwreck, with the many sores and scalding of my tongue in numerous places. And, yes, I know it most certainly was worse for you way back when.

    Thing is, anselmo, my recovery has been better than the great majority of other H&N patients. Perhaps with my 09 treatment the saying- the greater the pain, the greater the gain, holds true. I returned to work a month after my last rad session, and had gained back all the weight I lost in treatment some 6-months later, and can now eat most anything I want. It's just that you got the NPC many years too soon, anselmo, and I am truly sorry about that, for you. Others, like Hondo, were treated differently, or a number of years ago, and their recovery has not been as good as mine has, by no fault of their own. The advances in treatment of C are significant. Hawvet is 13-years, but your 20 will make you the NPC vet with the most tenure.

    A number of those who post in the H&N are in, or just completed, treatment. We share information, advice, experiences and support for each other- we are survivors, as are you.
    And you will be most welcome on the H&N.

    Believe

    kcass

    NPC
    wE can have a chat in Yahoo Messenger.

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