share your stories to give me hope?

hey_carrieann
hey_carrieann Member Posts: 8
edited March 2014 in Head and Neck Cancer #1
hi all.

my dad is currently in a fight for his life, radical neck dissection for squamous cell carcinoma in April failed to remove all of the cancer. The surgeon told my family that his illness was terminal, the cancer had spread to the chest wall and possibly to the vertabrae.

He's been going through daily radiation and weekly chemo for a little while now, with 2 and a half weeks left. The treatments are getting to be extremely rough on him and he's really ready to give up. He has already been through radiation before due to previous laryngeal cancer and was given an all clear last November.

I've read through nearly every thread on this board, looking for a ray of light. For those of you who have had similar experiences I'd be interested in hearing your stories, just so I can know my dad isn't the only one who has had to deal with this and that there is still a chance at life.

thank you.

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    There is always hope
    Carrieann,

    I am sorry to hear that your Dad has to travel this road. It is a rough road to travel, but having a positive attitude is a big plus with all of this. I have mentioned in prior posts either here or on another board. A close friend of my wife and I was told that she had 2 years to live and to get her things in order. She had Ovarian cancer, late stage. She sold her house and moved to a location she always wanted to be at. She enjoyed life as she thought her time here was getting short.

    Well, that was roughly 8 years ago and she is still going strong. She has slowed down on her spending as she realized that she out lived her Doctors perdictions. She won't say she is cured, but in remission.

    All I am saying is that even though our Doctors know allot about cancer, they don't know everything. They don't know the heart that each of us have, to fight and live. I'll use an old phrase. " It's not the size of the Dog in the fight, but the size of the Fight in the dog that matters"

    My Best to Both of You and Everyone Here
  • Greg53
    Greg53 Member Posts: 849
    MarineE5 said:

    There is always hope
    Carrieann,

    I am sorry to hear that your Dad has to travel this road. It is a rough road to travel, but having a positive attitude is a big plus with all of this. I have mentioned in prior posts either here or on another board. A close friend of my wife and I was told that she had 2 years to live and to get her things in order. She had Ovarian cancer, late stage. She sold her house and moved to a location she always wanted to be at. She enjoyed life as she thought her time here was getting short.

    Well, that was roughly 8 years ago and she is still going strong. She has slowed down on her spending as she realized that she out lived her Doctors perdictions. She won't say she is cured, but in remission.

    All I am saying is that even though our Doctors know allot about cancer, they don't know everything. They don't know the heart that each of us have, to fight and live. I'll use an old phrase. " It's not the size of the Dog in the fight, but the size of the Fight in the dog that matters"

    My Best to Both of You and Everyone Here

    Carrieann,
    Sorry to hear

    Carrieann,

    Sorry to hear about your Dad, but I've heard of too many people who have long outlived the doctor's predictions. Doctor's are very knowledgable but what they are telling you is just a scientific guess at this point. I have a long history of cancer in my family and my nephew and my sister both lived long past what the doctors told them they would (5 years extra for my nephew and 12 years for my sister). Their biggest trait that I thought helped them was, like Marine pointed out - a positive attitude. Plus both were fighters.

    I am only 10 weeks post treatment of Stage IV SCC of tonsil. It had mestastized into 11 lymph nodes and 4 of these were pitted. From my understanding this pitting opened up the nodes so that c-cells could have moved elsewhere in my body. Based on my family, I know that cancer does come back even if tests show an "all-clear". I know this will probably happen to me also, even if the tests show an all clear after one year. But that is not going to stop me from fighting and beating this thing!

    I decided to learn as much as I could and come up with a plan to fight back. Here's what I'm doing:
    1. Get the best doctors and let them do their job first. I did get the best doctors in my area and they have removed my tonsil and performed a neck dissection followed by 7 weeks of rad/chemo. I tried to learn as much as possible. I trust them, but still ask them if I have questions.
    2. Positive attitude. I learned, especially from my sister how important this is during trying times. I set goals and parameters for myself in regards to this and try to keep within those.
    3. Nutrition. This, in my opinion, is the most important thing we have control of. Especially for your Dad I would recommend two books - Anticancer and The China Study. Both of these indicate that nutrition can not only prevent but CAN REVERSE cancer. Some may disagree witht this, but for people like your Dad I think it's worth a shot.
    4. Physical well being. Keeping your body in shape does nothing but help promote healing.
    5. Mind Activities. Meditation, deep-breathing excercises, phrase repitition, Tai Chi, Qi Jong all are methods to relax and get our body and minds into one. Plus geting involved in groups and giving back to people is a postive action.

    I have no intention of losing my battle and plan on living a long, happy life. I hope that for your Dad also.

    Greg
  • micktissue
    micktissue Member Posts: 430
    Hey Carrieann
    I can't help but notice that your CSN handle is the title of a tune by The Hollies. Is that intentional?

    I have not been through what your dad has gone through, but I have held and talked to people who have and are going through it. This is a difficult time, the "not knowing" part, and it is a time for a lot of people to reach out to the people they love to help put things in perspective. Many of the people I've talked to have wanted to know that their life had meaning, even if they weren't sure they were terminal. This illness and its process has a way of pushing us toward making sense of our life, kicking and screaming sometimes.

    While your dad is alive and has fight, there is hope that he will survive. A terminal Dx and palliative care only mean that he has a better idea than the rest of us when his number will be up. We're all in the same boat at the end of the day and it's nice to know that we have been and are loved.

    Best to you and your dad.

    Mick
  • micktissue
    micktissue Member Posts: 430
    Greg53 said:

    Carrieann,
    Sorry to hear

    Carrieann,

    Sorry to hear about your Dad, but I've heard of too many people who have long outlived the doctor's predictions. Doctor's are very knowledgable but what they are telling you is just a scientific guess at this point. I have a long history of cancer in my family and my nephew and my sister both lived long past what the doctors told them they would (5 years extra for my nephew and 12 years for my sister). Their biggest trait that I thought helped them was, like Marine pointed out - a positive attitude. Plus both were fighters.

    I am only 10 weeks post treatment of Stage IV SCC of tonsil. It had mestastized into 11 lymph nodes and 4 of these were pitted. From my understanding this pitting opened up the nodes so that c-cells could have moved elsewhere in my body. Based on my family, I know that cancer does come back even if tests show an "all-clear". I know this will probably happen to me also, even if the tests show an all clear after one year. But that is not going to stop me from fighting and beating this thing!

    I decided to learn as much as I could and come up with a plan to fight back. Here's what I'm doing:
    1. Get the best doctors and let them do their job first. I did get the best doctors in my area and they have removed my tonsil and performed a neck dissection followed by 7 weeks of rad/chemo. I tried to learn as much as possible. I trust them, but still ask them if I have questions.
    2. Positive attitude. I learned, especially from my sister how important this is during trying times. I set goals and parameters for myself in regards to this and try to keep within those.
    3. Nutrition. This, in my opinion, is the most important thing we have control of. Especially for your Dad I would recommend two books - Anticancer and The China Study. Both of these indicate that nutrition can not only prevent but CAN REVERSE cancer. Some may disagree witht this, but for people like your Dad I think it's worth a shot.
    4. Physical well being. Keeping your body in shape does nothing but help promote healing.
    5. Mind Activities. Meditation, deep-breathing excercises, phrase repitition, Tai Chi, Qi Jong all are methods to relax and get our body and minds into one. Plus geting involved in groups and giving back to people is a postive action.

    I have no intention of losing my battle and plan on living a long, happy life. I hope that for your Dad also.

    Greg

    Ditto that post by Greg
    I printed that list Greg. Awesome summary of a guide to surviving cancer.

    Best,

    Mick
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hey_carrieann, I just want
    hey_carrieann, I just want to say I'm sorry about your dad and that you will both be in my prayers. I recommend lots of prayers b/c no matter what man can't do, GOD can. I firmly believe in my Savior and His healing power. Like the others said, being positive is also very important. I know it will be hard at a time like this but it is crucial for your dad. If he sees you being positive, he will also be positive. I wish you the very best and urge you to keep the faith and never give up.
    God Bless You,
    debbie
  • miccmill
    miccmill Member Posts: 248

    hey_carrieann, I just want
    hey_carrieann, I just want to say I'm sorry about your dad and that you will both be in my prayers. I recommend lots of prayers b/c no matter what man can't do, GOD can. I firmly believe in my Savior and His healing power. Like the others said, being positive is also very important. I know it will be hard at a time like this but it is crucial for your dad. If he sees you being positive, he will also be positive. I wish you the very best and urge you to keep the faith and never give up.
    God Bless You,
    debbie

    Carieann
    I agree with debbiejeane. All things possible through God.

    Greg, wonderful post. Very important points to guide ones recovery from this devastating illness.

    Best wishes and God Bless your dad.
  • Pam M
    Pam M Member Posts: 2,196
    miccmill said:

    Carieann
    I agree with debbiejeane. All things possible through God.

    Greg, wonderful post. Very important points to guide ones recovery from this devastating illness.

    Best wishes and God Bless your dad.

    Numbers Game
    Carrieann,

    I, too, am sorry to hear your dad's prognosis. I'm with the others on the "don't give up" bandwagon. If 99.93% (number I pulled out of the air) of people in your dad's condition only live a very short time, then you know, somebody has to be in that 0.07%, right?
  • greg from pa
    greg from pa Member Posts: 86
    Greg53 said:

    Carrieann,
    Sorry to hear

    Carrieann,

    Sorry to hear about your Dad, but I've heard of too many people who have long outlived the doctor's predictions. Doctor's are very knowledgable but what they are telling you is just a scientific guess at this point. I have a long history of cancer in my family and my nephew and my sister both lived long past what the doctors told them they would (5 years extra for my nephew and 12 years for my sister). Their biggest trait that I thought helped them was, like Marine pointed out - a positive attitude. Plus both were fighters.

    I am only 10 weeks post treatment of Stage IV SCC of tonsil. It had mestastized into 11 lymph nodes and 4 of these were pitted. From my understanding this pitting opened up the nodes so that c-cells could have moved elsewhere in my body. Based on my family, I know that cancer does come back even if tests show an "all-clear". I know this will probably happen to me also, even if the tests show an all clear after one year. But that is not going to stop me from fighting and beating this thing!

    I decided to learn as much as I could and come up with a plan to fight back. Here's what I'm doing:
    1. Get the best doctors and let them do their job first. I did get the best doctors in my area and they have removed my tonsil and performed a neck dissection followed by 7 weeks of rad/chemo. I tried to learn as much as possible. I trust them, but still ask them if I have questions.
    2. Positive attitude. I learned, especially from my sister how important this is during trying times. I set goals and parameters for myself in regards to this and try to keep within those.
    3. Nutrition. This, in my opinion, is the most important thing we have control of. Especially for your Dad I would recommend two books - Anticancer and The China Study. Both of these indicate that nutrition can not only prevent but CAN REVERSE cancer. Some may disagree witht this, but for people like your Dad I think it's worth a shot.
    4. Physical well being. Keeping your body in shape does nothing but help promote healing.
    5. Mind Activities. Meditation, deep-breathing excercises, phrase repitition, Tai Chi, Qi Jong all are methods to relax and get our body and minds into one. Plus geting involved in groups and giving back to people is a postive action.

    I have no intention of losing my battle and plan on living a long, happy life. I hope that for your Dad also.

    Greg

    Sorry to hear about your dad
    Sorry to hear about your dad Carriann.please be strong. He needs you to persevere and help him get through this difficult time. I think Greg offered up an excellant post. Thanks for the clear minded perspective Greg. I am going to print out your reply to.I am 10 weeks post diagnosis.base of tounge c w/ mestasis to lymph nodes. The mental part of dealing with cancer is a tough one.I see the look in my 8 year old daughters eyes sometimes when I am having a tough time.It gives me the will to fight and win.tnx to all for sharing info and hope. Greg from pa
  • hey_carrieann
    hey_carrieann Member Posts: 8
    Pam M said:

    Numbers Game
    Carrieann,

    I, too, am sorry to hear your dad's prognosis. I'm with the others on the "don't give up" bandwagon. If 99.93% (number I pulled out of the air) of people in your dad's condition only live a very short time, then you know, somebody has to be in that 0.07%, right?

    Still at it
    Thanks so much for the kind words on how to handle this big thing. I have still been around lurking, you have no idea how helpful all of you have been! My dad has finished all of his chemo and rads back in July. Now we wait a few more weeks for the PET scan. I have hoped and prayed and then hoped some more that the stubborn 5% of the cancer that wasn't removed in surgery was killed off with treatments.

    It's hard to keep my dad from sinking into a dark place, this is the 2nd time around for him fighting this, he's tired. But the stories that I find here and share are so helpful.
  • seahaven
    seahaven Member Posts: 10
    I had a radical neck
    I had a radical neck dissection for squamous cell last Dec. They were not able to get all the cancer. I had chemo and radiation and during treatment I got so sick I was unable to finish. They stopped both at about three quarter needed treatment. I am now cancer free and have been for three months. Don't give up. Miracles can happen. I will pray for you both.

    ed
  • kimmygarland
    kimmygarland Member Posts: 312
    seahaven said:

    I had a radical neck
    I had a radical neck dissection for squamous cell last Dec. They were not able to get all the cancer. I had chemo and radiation and during treatment I got so sick I was unable to finish. They stopped both at about three quarter needed treatment. I am now cancer free and have been for three months. Don't give up. Miracles can happen. I will pray for you both.

    ed

    My Husband - In Reverse
    What you describe with your Dad is happening to my husband, but in reverse. In July 2009 he had 6 wks induction chemo, followed by 35 rads w/chemo. At 9 month pet scan it had come back both in throat and in one lymph node. Now he is about to have surgery to remove... they think they can get clean margins, so hoping for the best.

    I am really surprised they gave your dad such a prognois, after surgery, especially since he had not had chemo/rads - as rads are often the primary "killer" of the cancer.

    It's a rough road and we are very scared too, but trying to put one foot in front of the other and get through each day. I hope the pet comes back clean.
  • PattyNC
    PattyNC Member Posts: 65

    My Husband - In Reverse
    What you describe with your Dad is happening to my husband, but in reverse. In July 2009 he had 6 wks induction chemo, followed by 35 rads w/chemo. At 9 month pet scan it had come back both in throat and in one lymph node. Now he is about to have surgery to remove... they think they can get clean margins, so hoping for the best.

    I am really surprised they gave your dad such a prognois, after surgery, especially since he had not had chemo/rads - as rads are often the primary "killer" of the cancer.

    It's a rough road and we are very scared too, but trying to put one foot in front of the other and get through each day. I hope the pet comes back clean.

    Doctors are human and can be wrong
    I agree with the posts saying the time your Dad has left might be off by years. The UPS delivery guy heard me discussing my brother's prognosis one day ... and he said his wife was was given a year or two for ovarian cancer and that was 8 or 10 years ago. He told me that in 2006 and it is now of course 2010. Since he still makes deliveries here from time to time and has never told me his wife passed away --- I am sure she is still here! Miracles happen, new treatments come along every day so I hope he doesn't give up and fights it. Not saying one should have false hope, but hope is a strong & powerful medicine in & of itself ... so I recommend high doses for your Dad.

    Sending prayers and well wishes your way.

    Patty