Stage IV - Not good prognosis

skipper85
skipper85 Member Posts: 229
edited March 2014 in Head and Neck Cancer #1
I've been on the lung cancer board but actually I should have been on this board all along. We thought the tumor in my husband's lung was another primary cancer and not mets. He had a biopsy on his left lung which showed it's mets from the head & neck cancer he had been treated for.

My husband had his appointment with the onc doc today. Mets in both lungs. A few months to live if he does no treatment and maybe up to a year and a half if he has treatment. Treatment would be with Erbitex. Of course we can always hope for remission.

Is anyone out there in a similar situation or have they experienced any kind of remission (however short) while on Erbitex?

My husband started smoking again because there's no point in quitting now. Even the surgeon told me if he enjoys his cigarettes let him have them. It's really not going to make any difference at this point.

I'm incredibly sad and scaird. I've been calm through this whole thing but reality has finally hit me.

My husband has not decided which way he's going to go on this. I know he's scaird but he doesn't want to talk about it with me. That makes it harder for me to help him. He's always been very macho and doesn't like to be considered sick or weak.

Would love to hear from others getting Erbitex or from other stage IV survivors.

Thanks for all your input and support.

Skipper

Comments

  • adventurebob
    adventurebob Member Posts: 691
    #2
    Stage IV
    Hi Skipper,

    So sorry for the place you find yourself at now. I am a stage 4 survivor in treatment for nasopharyngeal cancer with mets to sternum, sacrum and lumbar. I know nothing about Erbitex but have some experience with poor prognosis. I've been told 1-2 years without treatment or 1-3 with by multiple doctors. I chose the full treatment. Not to buy the possibility of 1 year but to have the possibility of complete cure, lifelong remission or whatever you call it. I can't imagine giving up the fight; ever. I hope that Erbitex is a good medicine for your husband and that he makes a decision that gives you much more time together. You will both be in my thoughts and prayers. Hang in there. You're never alone.

    Bob
  • backachedp
    backachedp Member Posts: 132
    #3
    Skipper85
    I just read your post and my heart aches for you. My Husband has St 4 Head and Neck he is 55. He had his last treatment nearly a year ago. He still cannot work and he is very frail...118lbs now. I know there are many on this board who can give you answers to your questions. I am very glad you found us. I wish I could be more help, but I just wanted you to know I am thinking about you and you Husband and hope that he decides to try the treatment. My Husband has not been sharing as much with me as he should have or could have, so I know how it feels when you want to help, but when they don't talk about it I know it makes me feel rather usless, but when he does share with me I am right there. I always figured it's his battle and I will let him fight it the way he needs to, but I am a bit hurt that he can't share more with me. I am thankful for each day we have. You have come to a place where there are so many caring and kind folks. I could not have known half of what I do without these wonderful people...you are in my prayers and I wish you strength thru this.
  • train-nut
    train-nut Member Posts: 101
    #4
    Be of Good Heart
    Skipper,

    I am a 3 year plus stage IV throat cancer survivor. Joe "soccerfreak" is a long time survivor of head/neck and lung cancer...I hope he sees your post and replies. I'm sure there are others. Also, erbitux has been a big help to a lot of people. Don't give up,
    there is valid hope. Wishing you and all on this board good health, Rich
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    backachedp said:

    Skipper85
    I just read your post and my heart aches for you. My Husband has St 4 Head and Neck he is 55. He had his last treatment nearly a year ago. He still cannot work and he is very frail...118lbs now. I know there are many on this board who can give you answers to your questions. I am very glad you found us. I wish I could be more help, but I just wanted you to know I am thinking about you and you Husband and hope that he decides to try the treatment. My Husband has not been sharing as much with me as he should have or could have, so I know how it feels when you want to help, but when they don't talk about it I know it makes me feel rather usless, but when he does share with me I am right there. I always figured it's his battle and I will let him fight it the way he needs to, but I am a bit hurt that he can't share more with me. I am thankful for each day we have. You have come to a place where there are so many caring and kind folks. I could not have known half of what I do without these wonderful people...you are in my prayers and I wish you strength thru this.

    backachedp, I have a question
    Have your husband's PET scans been clean during this year post-treatment?
  • skipper85
    skipper85 Member Posts: 229
    #6
    Noellesmom said:

    backachedp, I have a question
    Have your husband's PET scans been clean during this year post-treatment?

    He always had the tumor in his right lung but they thought it was another primary cancer and they were going to remove it with surgery. Unfortunately the CT scan before surgery showed a new growth in his left lung. A wedge resection was done and found that it was a met from the head & neck cancer. So surgery was cancelled.

    PET scan never showed the growth in left lung. Now I'm wondering what else it didn't show.

    Skipper
  • greg from pa
    greg from pa Member Posts: 86
    #7
    stage IV
    Hi my name is Greg. I was diagnosed with stage IV head and neck cancer last April. The extent of mets was into more than 3 lymph nodes (hence the stage iv diagnosis). I underwent 35 radiation treatments and 6 chemo sessions.This was last summer. It was a tough time for me ,but I kept loking to this board for encouragement which it provided.Today I weigh 132lbs.I used to weigh 180 . The treatment was tough in alot of ways.I was starting to lose hope last week. I had a PET scan on monday and today my ENT told me I have a clear scan.I am so relieved. I feel like maybe i'm dreamin or something. I have trouble thinkin about reouccurance already! I just hope that someway my story can give you and your husband some hope thru it all. For me the tougest aspect of it all was waking up every day to fight the same old battle.And mostly just being a cancer paitent and not much else. If possible try to help him get into activities or volunteer work which will give his life some purpose. I sure dont have all the answers but I hope this helps. Greg from Pa
  • skipper85
    skipper85 Member Posts: 229
    #8
    greg from pa said:

    stage IV
    Hi my name is Greg. I was diagnosed with stage IV head and neck cancer last April. The extent of mets was into more than 3 lymph nodes (hence the stage iv diagnosis). I underwent 35 radiation treatments and 6 chemo sessions.This was last summer. It was a tough time for me ,but I kept loking to this board for encouragement which it provided.Today I weigh 132lbs.I used to weigh 180 . The treatment was tough in alot of ways.I was starting to lose hope last week. I had a PET scan on monday and today my ENT told me I have a clear scan.I am so relieved. I feel like maybe i'm dreamin or something. I have trouble thinkin about reouccurance already! I just hope that someway my story can give you and your husband some hope thru it all. For me the tougest aspect of it all was waking up every day to fight the same old battle.And mostly just being a cancer paitent and not much else. If possible try to help him get into activities or volunteer work which will give his life some purpose. I sure dont have all the answers but I hope this helps. Greg from Pa

    Greg

    Thanks for your response. Unfortunately my husband is not in any shape to do volunteer work. We do have a home based business so he is still able to work at that. He had mets when he was first diagnosed but they thought it was another primary cancer. Either way his lungs are shot. He also has severe emphysema and he's started smoking again. I found out that he told my son that he is going to go for the Erbitux treatments. He hasn't told me yet. He usually tells me these things on the weekends after a couple of beers. He doesn't like to talk about it. I think he doesn't want to worry me or get me upset or look weak in front of me. It's an ego thing.

    It sounds like you're doing great though. I'm very happy to hear your PET scan was clear. Embrace each day. Do not dwell on recurrence. You have better things to do and think about. Live for the moment and enjoy life to the fullest.

    I wish you the best, long life and good health.

    Barb01
  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    adventurebob said:

    Stage IV
    Hi Skipper,

    So sorry for the place you find yourself at now. I am a stage 4 survivor in treatment for nasopharyngeal cancer with mets to sternum, sacrum and lumbar. I know nothing about Erbitex but have some experience with poor prognosis. I've been told 1-2 years without treatment or 1-3 with by multiple doctors. I chose the full treatment. Not to buy the possibility of 1 year but to have the possibility of complete cure, lifelong remission or whatever you call it. I can't imagine giving up the fight; ever. I hope that Erbitex is a good medicine for your husband and that he makes a decision that gives you much more time together. You will both be in my thoughts and prayers. Hang in there. You're never alone.

    Bob

    Never give up
    Hi Skipper, I am NPC cancer and it came back three times on me, the last time I refused any more treatment and my doctor only expected me to live a year or so, but I was not going to giving up that easy. I did everything I could to help my body to help its self and to seek out other types of cancer treatment. I am still here 5 years later and I just got a report from MD Anderson a few months ago saying I am cancer free. My local doctor who rote me off and has been trying to get me back on Chemo for years now could not believe it. I have just returned from the Mayo Clinic in AZ for another opinion, they did a biopsy of my nasal passageway and agree with the MD Anderson report that I am Cancer Free. What every you do please do something but please don’t give up as there is always hope.
  • Pam M
    Pam M Member Posts: 2,196
    #10
    Have Heard Good Things
    Skipper,

    I have no experience with Erbitex,but have heard good things. Hope it does wonders for your hubby. People surprise doctors on a regular basis. My hope is that, in a few months, hubby decides he's going to have to quit smoking, since he feels he's gonna make it.
  • buzz99
    buzz99 Member Posts: 404
    #11
    skipper85 said:

    Greg

    Thanks for your response. Unfortunately my husband is not in any shape to do volunteer work. We do have a home based business so he is still able to work at that. He had mets when he was first diagnosed but they thought it was another primary cancer. Either way his lungs are shot. He also has severe emphysema and he's started smoking again. I found out that he told my son that he is going to go for the Erbitux treatments. He hasn't told me yet. He usually tells me these things on the weekends after a couple of beers. He doesn't like to talk about it. I think he doesn't want to worry me or get me upset or look weak in front of me. It's an ego thing.

    It sounds like you're doing great though. I'm very happy to hear your PET scan was clear. Embrace each day. Do not dwell on recurrence. You have better things to do and think about. Live for the moment and enjoy life to the fullest.

    I wish you the best, long life and good health.

    Barb01

    Erbitux
    My hubby, Buzz, has Stage IV BOT cancer and is being treated with Erbitux along with radiation. Erbitux is a breeze compared with the TPF protocol he endured earlier. The side effects are few and mild. The rash seems to be the most common side effect but Buzz still does not have it after three treatments. So your husband should not have much difficulty with Erbitux.
  • skipper85
    skipper85 Member Posts: 229
    #12
    UPDATE - POOR PROGNOSIS

    Thanks Everyone for your support and prayers. My husband had decided to definitely go with the Erbitux treatment. He's going to call the onc today to set things up. He has to get a port and probably another CT scan. I am praying that this gives him a good quality of life for the time he has left and extends his life for more than just a few months. I'm encouraged by your posts that it's possible.

    It is so comforting to hear from all of you. I wish you all the best - health & happiness.

    Skipper
  • Thomp661
    Thomp661 Member Posts: 1
    #13
    Stage iv ..erbutux
    My husband is a stage 4 squamous cell in the Periform sinus area..with mets to both lungs and his bronchular and L4..He had 6 rounds of chemo which was carb.taxol and erbutux..5 months ago his pet scan didn't glow..now he is on weekly chemo of erbutux.My husband has been doing good with it, no rash ..nothing. He was not given a long time to live when he was first told of the cancer, yet here we are today and so far so good! He gets another pet scan next week..hopefully all will be the same. I also want to let you know he had the chemo and the radiation at the same time! They stated they wanted to attack it with all they had!! Its so far has done the job! Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #14
    Thomp661 said:

    Stage iv ..erbutux
    My husband is a stage 4 squamous cell in the Periform sinus area..with mets to both lungs and his bronchular and L4..He had 6 rounds of chemo which was carb.taxol and erbutux..5 months ago his pet scan didn't glow..now he is on weekly chemo of erbutux.My husband has been doing good with it, no rash ..nothing. He was not given a long time to live when he was first told of the cancer, yet here we are today and so far so good! He gets another pet scan next week..hopefully all will be the same. I also want to let you know he had the chemo and the radiation at the same time! They stated they wanted to attack it with all they had!! Its so far has done the job! Debbie

    Hi Debbie
    Welcome to our faimly here on CSN, I am glad to hear your husban is doing well and will keep him inprayer on his next PET

    Take care
    Hondo

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