Head & Neck Goes To Lungs ,Please Help

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turbomustang84
turbomustang84 Member Posts: 5
edited May 2015 in Head and Neck Cancer #1

I am a survivor of Head & Neck Cancer (Squamous Cell Carcinoma ) but although i still have a battle on many fronts my Cancer has not returned .


unfortunately my Brother inlaw was diagnosed  with the same cancer and underwent chemo therapy/ Radiation treatments and although that seemed to go well he later ended up with a brain bleed which requred surgery and now two small spots on his lungs have been found that are also malignant .


this has been a terrible time for my family and what i really need is some information from others that have had similar situations that can tell us what kind of therapy or trial you did ? and any information that you can give to help will be most appreciated .


back when i became ill it was my sister who stood beside me when my stage 4 cancer made everything seem like it was coming to an end but because of my sister and my wife i still fight the good fight and it is almost a cruel joke that the ones that were there for me now face this battle on their own doorstep .

 

again any treatment information or your personal guidance as to what we do next is really needed and i need to be able to lift his state of mind because he has all but given up and as a survivor myself that was given very little chance of making it i truly believe in the power of staying positive .

 

thank you in advance and God Bless

 

Robbie

Comments

  • avisemi
    avisemi Member Posts: 172
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    Robbie,
    i don't have info for

    Robbie,

    i don't have info for you. Though just wanted to tell you that I'll be praying for your brother in law and your family. I had not mentioned before, Dima had a brain bleed too. At the time, it was the least of his problems since he was in the ICU. 

     

  • turbomustang84
    turbomustang84 Member Posts: 5
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    avisemi said:

    Robbie,
    i don't have info for

    Robbie,

    i don't have info for you. Though just wanted to tell you that I'll be praying for your brother in law and your family. I had not mentioned before, Dima had a brain bleed too. At the time, it was the least of his problems since he was in the ICU. 

     

    Thank You

    Thank You

  • wmc
    wmc Member Posts: 1,804
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    Welcome to the H&N

    My cancer was SCC just above my vocal cords. I had a full laryngectomy and double neck dissection and 86 glands removed. I am stage 3 COPB and have both Broncitus and emphysema. I was told before I had cancer, that I was a good candate to have lung reduction surgery. That is removing 20~30% of each lung. I had valley fever when I was 28 and it has scarred the top of both lungs. Also my right lung collapsed twice and the treatment remover the fluid around the lung [you need it] and burns and scars your lung so it won't collaps again. Well later you get much scar tissue and your lungs don't expand like they should. I also have some cysts that calcified. I no longer can work because of my lungs and COPD. The reason I an telling you this is I worked very hard to learn how to breath better, Also I now breath through my neck, and try to get some exersizing in. Walking is very hard but I can and do ride a bicycle 5 to 10 miles every day to keep in shape. I am no longer being considered needing lung reduction surgery which is worse then having heart surgery. I just saw my lung doctor two weeks ago, he told me there is not any doctor that would consider me having it. So let your brother-in-law, NEVER GIVE UP. They can go in and remove the cysts very easly now days. It is up to you to fight. When they found my cancer I had a gray color and coughed up onces of blood at a time. Only two of 250 people I work with ever thought they would see me again. I went back to work in 10 weeks, and beat cancer. The emphysema is what took me off work, but I am doing much better and ride a bike every day. So far my best was 17 miles. Again, never ever give up. Now I breath through my neck and have stage 3 emphysema but I can blow up a balloon and have been told by my doctor he has never seen someone with a laryngectomy do that. I never gave up.

    Here is a link you can show him. It is me and a balloon; https://www.youtube.com/watch?v=sL-ZuyhSMEM then tell him to never give up......... It can get better. I do hope this helps him.

    Bill

  • turbomustang84
    turbomustang84 Member Posts: 5
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    wmc said:

    Welcome to the H&N

    My cancer was SCC just above my vocal cords. I had a full laryngectomy and double neck dissection and 86 glands removed. I am stage 3 COPB and have both Broncitus and emphysema. I was told before I had cancer, that I was a good candate to have lung reduction surgery. That is removing 20~30% of each lung. I had valley fever when I was 28 and it has scarred the top of both lungs. Also my right lung collapsed twice and the treatment remover the fluid around the lung [you need it] and burns and scars your lung so it won't collaps again. Well later you get much scar tissue and your lungs don't expand like they should. I also have some cysts that calcified. I no longer can work because of my lungs and COPD. The reason I an telling you this is I worked very hard to learn how to breath better, Also I now breath through my neck, and try to get some exersizing in. Walking is very hard but I can and do ride a bicycle 5 to 10 miles every day to keep in shape. I am no longer being considered needing lung reduction surgery which is worse then having heart surgery. I just saw my lung doctor two weeks ago, he told me there is not any doctor that would consider me having it. So let your brother-in-law, NEVER GIVE UP. They can go in and remove the cysts very easly now days. It is up to you to fight. When they found my cancer I had a gray color and coughed up onces of blood at a time. Only two of 250 people I work with ever thought they would see me again. I went back to work in 10 weeks, and beat cancer. The emphysema is what took me off work, but I am doing much better and ride a bike every day. So far my best was 17 miles. Again, never ever give up. Now I breath through my neck and have stage 3 emphysema but I can blow up a balloon and have been told by my doctor he has never seen someone with a laryngectomy do that. I never gave up.

    Here is a link you can show him. It is me and a balloon; https://www.youtube.com/watch?v=sL-ZuyhSMEM then tell him to never give up......... It can get better. I do hope this helps him.

    Bill

    thank you , you are an

    thank you , you are an inspiration to us all :-)

  • Hondo
    Hondo Member Posts: 6,636 Member
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    Hi Robbie

     

    I am NPC and fought it 3 times, twice with radiation to the head & neck and once with chemo & radiation. The 3rd time I was to beat and rundown to do anymore treatment so just did some natural treatment; you can read up on it by going to my all about me page. Stay focus on healing as for me I pray a lot asking for God to intervene in my life and in the life of others, there is a lot of power in prayer.

    As Bill said NEVER GIVE UP

     

    Welcome to the family here on CSN

     

    Tim Hondo   

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    Robbie, I'm sorry that cancer

    Robbie, I'm sorry that cancer has hit yet again in your family.  I don't have any answers but I will be praying for you and your bil.  this disease is so cruel and relentless that it makes it easy to think we should just give up.  I pray he doesn't do that.  you will all just have to rally around him and make him see he is not alone in this battle.  maybe you can get him to come here and talk to others to see that we are winners.  we have members here who were supposed to leave us many years ago.  he can beat this.  i will be praying for you, him and your families. 

    God bless you,

    dj

  • BirdDogBrownie
    BirdDogBrownie Member Posts: 1
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    wmc said:

    Welcome to the H&N

    My cancer was SCC just above my vocal cords. I had a full laryngectomy and double neck dissection and 86 glands removed. I am stage 3 COPB and have both Broncitus and emphysema. I was told before I had cancer, that I was a good candate to have lung reduction surgery. That is removing 20~30% of each lung. I had valley fever when I was 28 and it has scarred the top of both lungs. Also my right lung collapsed twice and the treatment remover the fluid around the lung [you need it] and burns and scars your lung so it won't collaps again. Well later you get much scar tissue and your lungs don't expand like they should. I also have some cysts that calcified. I no longer can work because of my lungs and COPD. The reason I an telling you this is I worked very hard to learn how to breath better, Also I now breath through my neck, and try to get some exersizing in. Walking is very hard but I can and do ride a bicycle 5 to 10 miles every day to keep in shape. I am no longer being considered needing lung reduction surgery which is worse then having heart surgery. I just saw my lung doctor two weeks ago, he told me there is not any doctor that would consider me having it. So let your brother-in-law, NEVER GIVE UP. They can go in and remove the cysts very easly now days. It is up to you to fight. When they found my cancer I had a gray color and coughed up onces of blood at a time. Only two of 250 people I work with ever thought they would see me again. I went back to work in 10 weeks, and beat cancer. The emphysema is what took me off work, but I am doing much better and ride a bike every day. So far my best was 17 miles. Again, never ever give up. Now I breath through my neck and have stage 3 emphysema but I can blow up a balloon and have been told by my doctor he has never seen someone with a laryngectomy do that. I never gave up.

    Here is a link you can show him. It is me and a balloon; https://www.youtube.com/watch?v=sL-ZuyhSMEM then tell him to never give up......... It can get better. I do hope this helps him.

    Bill

    Head and neck cancer

    My Dad has been battling this cancer for 7 years. He completed radiation at the end of February, 2015. He has not been able to breathe now. The doctors are saying he has radiation damaged lungs. We are hopeful to help him. Any advice? Also, he is not tolerating his tube feed formula. Any suggestions?

    Bird Dog and his Pup:)

  • Eversteve
    Eversteve Member Posts: 23
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    Hondo said:

    Hi Robbie

     

    I am NPC and fought it 3 times, twice with radiation to the head & neck and once with chemo & radiation. The 3rd time I was to beat and rundown to do anymore treatment so just did some natural treatment; you can read up on it by going to my all about me page. Stay focus on healing as for me I pray a lot asking for God to intervene in my life and in the life of others, there is a lot of power in prayer.

    As Bill said NEVER GIVE UP

     

    Welcome to the family here on CSN

     

    Tim Hondo   

    "Hi Robbie" by Hondo

    I think you nailed it in your response. However, I cannot comprehend you having NPC three times. I have had it once and often wonder what I would do if my NPC spread or returned.

    Anyway, your point that I wanted to comment on is "Stay focus on healing as for me I pray a lot asking for God to intervene in my life and in the life of others, there is a lot of power in prayer."...........I would add tat despite everything, stay positive.

    YOUR COMMENT IS SO IMPORTANT, it needs to be in a header or banner on this site.

    It is very easy on the bad days to fall into the trap of feeling sorry for yourself, I have done it myself many times. BUT in doing so, (negativity that is) it only makes matters worse and whether it is a mind-bending thing, actually oly makes you feel worse.

    Coming from Manchester in the NW of England and being a little bit more basic wih my use of language, I reckon the slogan of this site should be - stealing most of your slogan !!:

    "Stay focussed on healing, pray and ask God to intervene in my life and in the life of others and **** NPC and all cancers, because I shall beat it, time and time again".

     

  • Eversteve
    Eversteve Member Posts: 23
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    Head & Neck Goes To Lungs ,Please Help

    Sorry turbomustang84, I forgot my original point on this thread.

    You wrote "again any treatment information or your personal guidance as to what we do next is really needed and i need to be able to lift his state of mind because he has all but given up and as a survivor myself that was given very little chance of making it i truly believe in the power of staying positive ."

    You hve answered your own question in "i truly believe in the power of staying positive".......that is half the battle won, just in that thought. However re-reading your comment, your situuation sounds like an absolute nightmare. I can only offer my view of a situation I have not had and it may sound very callous.

    You need to do what is good, what is right and what is proper for a loved one, but you also need to keep a small part of your strength for yourself. Whatever anyone says, yes you have survived but you are wekened - you will be no help to anyone, inclusive of yourself, if you do not stay strong yourself.  

    I wish you and your familly well and can only offer the rather childish comment of "dont let the ****ard cancer grind you down"

    Good luck



     

  • Eversteve
    Eversteve Member Posts: 23
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    Head & Neck Goes To Lungs Turboguy ....Please Help

    I came back to this, because I knew I had missed something deep down, but couldnt think what.

    mmmm, I am no expert, but reading your comment again and again, I think your Brother in-law is depressed, to what degree I dont knw.

    Firstly, you can bring him onto this site and show him that WE DO SURVIVE, if we fight the c**t.

    Something that helped me was a holiday - after I got over my panic of leaving my house of course.

    Give him a couple of good nights out. The first he may end up crying in his beer, but then the negative emotions are temprarily out - take him out again and you will see a different side. If he is mre a leader than a follower, a so called Alpha male - the knock to your pride is worst than anything else - well it was for me anyway.

    Get him to a shrink. He sounds negative, dejected and so on. DO NOT make a big thing of it, maybe bring him / her to meet him sometime - by stealth

    Just my last thought and I dont know where this fits in to the above - we all have our own way of dealing with things, we all get down, whether we admit it or not. It can last an hour, a day, a month ......any longer than that, get him to the shrink, but very similar to the grieving process, it does take time to get your head around what is happening.

    I hate cancer

     

     

     

  • Eversteve
    Eversteve Member Posts: 23
    Options
    Head & Neck Goes To Lungs Turboguy ....Please Help

    I came back to this, because I knew I had missed something deep down, but couldnt think what.

    mmmm, I am no expert, but reading your comment again and again, I think your Brother in-law is depressed, to what degree I dont knw.

    Firstly, you can bring him onto this site and show him that WE DO SURVIVE, if we fight the c**t.

    Something that helped me was a holiday - after I got over my panic of leaving my house of course.

    Give him a couple of good nights out. The first he may end up crying in his beer, but then the negative emotions are temprarily out - take him out again and you will see a different side. If he is mre a leader than a follower, a so called Alpha male - the knock to your pride is worst than anything else - well it was for me anyway.

    Get him to a shrink. He sounds negative, dejected and so on. DO NOT make a big thing of it, maybe bring him / her to meet him sometime - by stealth

    Just my last thought and I dont know where this fits in to the above - we all have our own way of dealing with things, we all get down, whether we admit it or not. It can last an hour, a day, a month ......any longer than that, get him to the shrink, but very similar to the grieving process, it does take time to get your head around what is happening.

    I hate cancer