Apparently I have a bigger problem =/

Mommy of 5
Mommy of 5 Member Posts: 10
edited March 2014 in Head and Neck Cancer #1
I have been to 2 different docs now and confirmed that I have tongue and throat cancer...Gets better and better! This time the surgery is going to remove my whole tongue, and I must have chemo...Im going to take my chances and have the chemo first to see what kinda butt kicking that can lay down on this stuff before I have the whole thing removed...Im a woman I love to talk and my husband loves to hear me griping...If anyone can give me any pointers on the chemo part I dodged that particular treatment the first time around..The radiation was bad enough I lost 100 lbs from the not being able to eat and didnt have to have the feeding tube to terribly long But I was seriously dehydrated.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Chemo
    First, I'm very sorry you have to endure this again....

    For me the chemo wasn't actually that bad, leaving nothing really as for long term effects (that I'm aware of).

    Now the radiation was more painful, and with long lasting effects. Some eventually lesssened or disappeared, others will be with me forever.

    They have some great anti-nausea drugs EMEND is one, I highly recommend it. Also stay hydrated and flush it from your system. As you know dehydration really stinks.

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Skiffin16 said:

    Chemo
    First, I'm very sorry you have to endure this again....

    For me the chemo wasn't actually that bad, leaving nothing really as for long term effects (that I'm aware of).

    Now the radiation was more painful, and with long lasting effects. Some eventually lesssened or disappeared, others will be with me forever.

    They have some great anti-nausea drugs EMEND is one, I highly recommend it. Also stay hydrated and flush it from your system. As you know dehydration really stinks.

    Best,
    John

    Can't find the right words
    My thoughts are with you, hope all avenues get exhausted before someone's tongue is removed. I also found the chemo much more doable than the radiation. It can also be adjusted at varying dosages as well as different cocktails of chemicals.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #4
    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #5
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    I am going to fight!
    I am going to do what ever keeps me planted on earth with my family, I chose to try the chemo first in hopes that it may shrink or miraculously take it from me to where the surgery isn't quite so drastic..I have been told to eat lots of yogurt, take plenty vitamins..And heard that herbal cures are the way to go...At this point I'm mentally exhausted and have spent the better part of three days just being with my 3 year old son..He has the most calming effect on me and Can drag a smile from my heart just watching him play..I was told 5 years ago that I couldn't have anymore children but ...David was born Oct 13th 2007....That is proof that not everything is set in stone, just as this isn't I appreciate any ideas you may share with me, I'm willing to give anything a shot at this point..I just want to fight to keep my voice..That's alot of missing I Love You's and I missed you's to miss out on sharing with people I hold dear..I know it isn't just being able to say it...It's being able to give them a hug..But it's always nice to say and even better when you hear it.
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #6
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    I am going to fight!
    I am going to do what ever keeps me planted on earth with my family, I chose to try the chemo first in hopes that it may shrink or miraculously take it from me to where the surgery isn't quite so drastic..I have been told to eat lots of yogurt, take plenty vitamins..And heard that herbal cures are the way to go...At this point I'm mentally exhausted and have spent the better part of three days just being with my 3 year old son..He has the most calming effect on me and Can drag a smile from my heart just watching him play..I was told 5 years ago that I couldn't have anymore children but ...David was born Oct 13th 2007....That is proof that not everything is set in stone, just as this isn't I appreciate any ideas you may share with me, I'm willing to give anything a shot at this point..I just want to fight to keep my voice..That's alot of missing I Love You's and I missed you's to miss out on sharing with people I hold dear..I know it isn't just being able to say it...It's being able to give them a hug..But it's always nice to say and even better when you hear it.
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #7
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    I am going to fight!
    I am going to do what ever keeps me planted on earth with my family, I chose to try the chemo first in hopes that it may shrink or miraculously take it from me to where the surgery isn't quite so drastic..I have been told to eat lots of yogurt, take plenty vitamins..And heard that herbal cures are the way to go...At this point I'm mentally exhausted and have spent the better part of three days just being with my 3 year old son..He has the most calming effect on me and Can drag a smile from my heart just watching him play..I was told 5 years ago that I couldn't have anymore children but ...David was born Oct 13th 2007....That is proof that not everything is set in stone, just as this isn't I appreciate any ideas you may share with me, I'm willing to give anything a shot at this point..I just want to fight to keep my voice..That's alot of missing I Love You's and I missed you's to miss out on sharing with people I hold dear..I know it isn't just being able to say it...It's being able to give them a hug..But it's always nice to say and even better when you hear it.
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #8
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    I am going to fight!
    I am going to do what ever keeps me planted on earth with my family, I chose to try the chemo first in hopes that it may shrink or miraculously take it from me to where the surgery isn't quite so drastic..I have been told to eat lots of yogurt, take plenty vitamins..And heard that herbal cures are the way to go...At this point I'm mentally exhausted and have spent the better part of three days just being with my 3 year old son..He has the most calming effect on me and Can drag a smile from my heart just watching him play..I was told 5 years ago that I couldn't have anymore children but ...David was born Oct 13th 2007....That is proof that not everything is set in stone, just as this isn't I appreciate any ideas you may share with me, I'm willing to give anything a shot at this point..I just want to fight to keep my voice..That's alot of missing I Love You's and I missed you's to miss out on sharing with people I hold dear..I know it isn't just being able to say it...It's being able to give them a hug..But it's always nice to say and even better when you hear it.
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #9
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    Thanks for all your best wishes!
    Thank you all for your best wishes and thoughts..I had a horrid experience with the rads..And after all this time I still suffer from side effects even now on a daily basis..I am just going to continue smiling and hoping for the best until I am either at rest or cancer free again...as close to cancer free as you can get..Even with the cancer gone you aren't free there is always the thought in the back of your mind the fear in your heart and the wonderful feeling of knowing that you beat it once...you can surely do it again! Cancer goes away but the aftershocks stick around forever.
  • Mommy of 5
    Mommy of 5 Member Posts: 10
    #10
    Hondo said:

    Hi Mommy

    I understand where you are on this and you are the one who in the end must live or die with the choice you make. If you are not going to remove the cancer and do just Chemo you need to make some life style changes also in order to help your body help its self. There are some things you can do to help your body fight the cancer I will send you a PM

    All the best to you
    Hondo

    .

    .
  • rmkbrad
    rmkbrad Member Posts: 176
    #11
    Mommy of 5 said:

    Thanks for all your best wishes!
    Thank you all for your best wishes and thoughts..I had a horrid experience with the rads..And after all this time I still suffer from side effects even now on a daily basis..I am just going to continue smiling and hoping for the best until I am either at rest or cancer free again...as close to cancer free as you can get..Even with the cancer gone you aren't free there is always the thought in the back of your mind the fear in your heart and the wonderful feeling of knowing that you beat it once...you can surely do it again! Cancer goes away but the aftershocks stick around forever.

    Keep fighting
    I went through chemo and radiation last year and still have base of tongue cancer now, I finished my second round of cysplatin,5fu and taxatir three weeks ago. I met with a new radiologiest yesterday and discussed another radiation treatment, bracheytherpy with hyperthermia, because I refuse to let them cut my tongue out. There has to be a better way to treat this stuff than slice and dice. My family has agreed with my decision strong so far, I told the docs that the is being alive and living life. Not being able to talk or eat is not living life. Anyway the pet scan I had this week shows the tumor shrunk by about 70% but is still there, I started this with esophagus cancer as well and we got it the first time. But my oncologiest told me today the they saw somthing there that had them concerned but my radiologist thought it was nothing, anyway have to have a scope done next week to confirm it is nothing. Maybe talk to your medical team about different types of treatment uther than cutting. Keep fighting, and never give up, educate yourself and put the doctors on the spot. I ask tons of questions and do alot of research, they are always on the A game when we meet because of this.


    Brad
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #12
    Yes Keep Fighting
    BOT stage 4 here. One of my treatment options was surgery to cut out the tongue. The other options were radiation alone and rads with concurrent chemo. The docs didn't recommend the surgery because of the resulting lifestyle issues as you and Brad have mentioned. Same as Brad, we chose the rads/chemo treatment instead. I am 6 months out now, the 1st CT scan was clean and the next PET/CT scan is scheduled for next month. At this point, the rads/chemo treatment is looking like the correct choice for me.

    Staying hydrated during the chemo is extremely important, as you must flush the chemo from your system. I had 3 chemo treatments. The initial one was easy, the last one much tougher. The effects of the last one stayed with me for 4-5 days. Hope this helps you. Cheers

    Jimbo

Discussion Boards