Well we start a new trial study

pattynonews
pattynonews Member Posts: 176
edited March 2014 in Head and Neck Cancer #1
Well it has been a year since Jack was Dx with stage 4 head and neck cancer, and almost to the day we are starting a new trial study, He has been on so many chemo treatments, all the conviental chemo is not working he did 33 days of radiation , The orginal tumor went away, but now it has spread to the other side of his neck and small spots on his lungs and liver, the good news it is not spreading no more in the liver, But we had to rush him to hospital die to the tumor was blocking his air way so now he has a trachea, and he has not eaten in a year due to the fact the radation destroyed his throat, so he is peg fed. He was suppose to play at the Woodstock Festivable in WA for the 40 annivasry of Woodstock ( he is a drummer ) but due to his health we can not travel that far, Is there anyone out there who has gone through all this, Jack has been hit with ever side effect , but he is still fighting the fight, We have our good days and bad days, we can't seem to get the pain under control, they said if we could get the pain under control his well being would be better, I am his total care taker, I just feel lost sometimes,

Comments

  • newbride
    newbride Member Posts: 142
    #2
    Patty
    Do you know the type of cancer your husband has? Just curious. Although my husbands is not in is lungs it seems almost similar in that it keeps coming back. What state are you guys in?
  • pattynonews
    pattynonews Member Posts: 176
    #3
    newbride said:

    Patty
    Do you know the type of cancer your husband has? Just curious. Although my husbands is not in is lungs it seems almost similar in that it keeps coming back. What state are you guys in?

    He is stage 4 it started as
    He is stage 4 it started as head and neck cancer, put spread some small spots of his lungs and small on his liver, it is a struggle every day, Now he is back in the hospital we did not even get to start the trial study, he has a bacterial infection and his port is infected, so we had to rush him to the hospital so he does not get septic, I feel like we are going backwards, now we have to wait for the infection to clear up before we can start a new trial Im scared, Jack is still such a fighter,
  • newbride
    newbride Member Posts: 142
    #4
    pattynonews said:

    He is stage 4 it started as
    He is stage 4 it started as head and neck cancer, put spread some small spots of his lungs and small on his liver, it is a struggle every day, Now he is back in the hospital we did not even get to start the trial study, he has a bacterial infection and his port is infected, so we had to rush him to the hospital so he does not get septic, I feel like we are going backwards, now we have to wait for the infection to clear up before we can start a new trial Im scared, Jack is still such a fighter,

    I'm Sorry
    I'm so sorry to hear you couldn't start the trial. So far my husband's cancer has not spread elsewhere in the body. I also feed like sometimes for every step forward we get thrown back 3. Do you know the specific type - I know the general type is head and neck cancer but what about the type? My husband was diagnosed with myoepithelial carcinoma which is a salivary gland cancer which usually is in the mouth area, my husband's is extremely rare in the fact that it is in his sinus/nasal cavity.
  • pattynonews
    pattynonews Member Posts: 176
    #5
    newbride said:

    I'm Sorry
    I'm so sorry to hear you couldn't start the trial. So far my husband's cancer has not spread elsewhere in the body. I also feed like sometimes for every step forward we get thrown back 3. Do you know the specific type - I know the general type is head and neck cancer but what about the type? My husband was diagnosed with myoepithelial carcinoma which is a salivary gland cancer which usually is in the mouth area, my husband's is extremely rare in the fact that it is in his sinus/nasal cavity.

    still fighting the fight,
    It is squamous cell carcimona it started in the tonsil area on th left side, It then travel to his lungs and liver after 9 months of treatment, and to the right side of his throat, He is in the hospital because his port got a bacterail infection, so they removed the port today, and they are checking some spots on his lungs, but we are still fighting the fight It has been a very long year, Jack and I have only been together, 15 months, so it has been hard, a new relationship and cancer on top of that, Im so afraid of the future I finally meet the one and I get slammed down, but Im going to love him and keep fighting the fight
  • newbride
    newbride Member Posts: 142
    #6
    pattynonews said:

    still fighting the fight,
    It is squamous cell carcimona it started in the tonsil area on th left side, It then travel to his lungs and liver after 9 months of treatment, and to the right side of his throat, He is in the hospital because his port got a bacterail infection, so they removed the port today, and they are checking some spots on his lungs, but we are still fighting the fight It has been a very long year, Jack and I have only been together, 15 months, so it has been hard, a new relationship and cancer on top of that, Im so afraid of the future I finally meet the one and I get slammed down, but Im going to love him and keep fighting the fight

    I feel your pain
    i Patty I know what you're feeling....the same thoughts go through my head a 100 times a day! My husband's cancer has not spread (thank goodness) elsewhere in his body - although it spread from his sinus cavity to the nasal cavity to his mouth so it has stayed localized which helps with the radiation. The hardest part is that we cannot tell if this is working for him or not. Yesterday was the 1/2 way mark in the treatment. They have said that when this is over they have to wait 3 weeks then scan him - if there is any cancer left there is nothing more they can do since surgery is out of the question and they cannot treat the same area with radiation for at least a minimum of 6 months or the radiation will kill him -- and if he waits 6 months the tumors will kill him. So we just keep hoping and praying and fighting the fight. The good part is yesterday he did tell me he has not stopped fighting.

    Hang in there -- if you need to talk I'm here, I don't think some people realize how hard it is to be in a new relationship and be going through this - people talk to me like we've been together for years and this is just part of life -- yeah it's part of life but so damn unfair at least give us some time to enjoy each other first then let us deal with this stuff!!
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #7
    newbride said:

    I feel your pain
    i Patty I know what you're feeling....the same thoughts go through my head a 100 times a day! My husband's cancer has not spread (thank goodness) elsewhere in his body - although it spread from his sinus cavity to the nasal cavity to his mouth so it has stayed localized which helps with the radiation. The hardest part is that we cannot tell if this is working for him or not. Yesterday was the 1/2 way mark in the treatment. They have said that when this is over they have to wait 3 weeks then scan him - if there is any cancer left there is nothing more they can do since surgery is out of the question and they cannot treat the same area with radiation for at least a minimum of 6 months or the radiation will kill him -- and if he waits 6 months the tumors will kill him. So we just keep hoping and praying and fighting the fight. The good part is yesterday he did tell me he has not stopped fighting.

    Hang in there -- if you need to talk I'm here, I don't think some people realize how hard it is to be in a new relationship and be going through this - people talk to me like we've been together for years and this is just part of life -- yeah it's part of life but so damn unfair at least give us some time to enjoy each other first then let us deal with this stuff!!

    I feel your pain
    Hey ya'll,

    I am in the same boat! Was married this year on Valentine's Day and my husband was diagnosed with stage 4 squamous cell to his right tonsil on June1. I was so looking forward to our new beginning and now our lives are a mess. He has had three weeks of radiation and one chemo. We have two more chemo treatments and four more weeks of radiation. He has done really well so far, but I am so scared of it spreading since I keep hearing about that happening. I just wish I could wake up and this would all be over. Patty, I am so sorry about Jack. I will put you on the top of my prayer list. Newbride, hang in there. I will be thinking about you both. I certainly feel your pain. I keep thinking, when will this be over and we get to do fun things again. Just take it one day at a time, really that is our only choice.

    Peace be with you,
    Donna
  • pattynonews
    pattynonews Member Posts: 176
    #8
    carolinagirl67 said:

    I feel your pain
    Hey ya'll,

    I am in the same boat! Was married this year on Valentine's Day and my husband was diagnosed with stage 4 squamous cell to his right tonsil on June1. I was so looking forward to our new beginning and now our lives are a mess. He has had three weeks of radiation and one chemo. We have two more chemo treatments and four more weeks of radiation. He has done really well so far, but I am so scared of it spreading since I keep hearing about that happening. I just wish I could wake up and this would all be over. Patty, I am so sorry about Jack. I will put you on the top of my prayer list. Newbride, hang in there. I will be thinking about you both. I certainly feel your pain. I keep thinking, when will this be over and we get to do fun things again. Just take it one day at a time, really that is our only choice.

    Peace be with you,
    Donna

    Thank you Donna, I two
    Thank you Donna, I two though Jack and I would have forever and he still promises me forever, He is doing so much better today,They removed the port and his pain level is down to a 2 which is amazing, I see the Jack I fell in love with, All he has talked about today was coming home and making love to me, I just cry, because I miss him so much,I finally get a second chance with love and cancer happen, WHY !!!But Im not going to waste any moments that I have with Jack I am going to enjoy every moment and cherish them He is still in the hospital I hate leaving him at night but I am so tired, and we have a little dog ( we got her when Jack was diagnosis it was the best therapy for him ) so I have to come home and check on her, but Im so tired, But it does give me some relief to be able to talk to someone thank you
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #9
    pattynonews said:

    Thank you Donna, I two
    Thank you Donna, I two though Jack and I would have forever and he still promises me forever, He is doing so much better today,They removed the port and his pain level is down to a 2 which is amazing, I see the Jack I fell in love with, All he has talked about today was coming home and making love to me, I just cry, because I miss him so much,I finally get a second chance with love and cancer happen, WHY !!!But Im not going to waste any moments that I have with Jack I am going to enjoy every moment and cherish them He is still in the hospital I hate leaving him at night but I am so tired, and we have a little dog ( we got her when Jack was diagnosis it was the best therapy for him ) so I have to come home and check on her, but Im so tired, But it does give me some relief to be able to talk to someone thank you

    I'm tired too!
    Hey Patty,

    I hear you about being tired. Earl is at home but I still know he needs me there and I have to go to work everyday. I am tired all the time even though I get enough sleep. I guess it's because we have so much on our mind. I am glad Jack is doing a little better. I am just taking it one day at a time too. I try not to think too far in the future, just enjoy today. I can't wait til the day when I can see him smile again. He looks so sad and tired. We are halfway done with treatment. I pray Jack gets better and I will keep you in my prayers too.

    Donna
  • pattynonews
    pattynonews Member Posts: 176
    #10
    carolinagirl67 said:

    I'm tired too!
    Hey Patty,

    I hear you about being tired. Earl is at home but I still know he needs me there and I have to go to work everyday. I am tired all the time even though I get enough sleep. I guess it's because we have so much on our mind. I am glad Jack is doing a little better. I am just taking it one day at a time too. I try not to think too far in the future, just enjoy today. I can't wait til the day when I can see him smile again. He looks so sad and tired. We are halfway done with treatment. I pray Jack gets better and I will keep you in my prayers too.

    Donna

    another setback
    well we neve got to start the new trial study , Jack's port got infected and he was in the hospital so we are just waiting , what exactly we are waiting for I don't know, I get so angry, I am blessed Jack does get around and he actually played the drums the other night, but we don;t know what the cancer is doing, we are in limbo, what is the next step we go back to the doctors on Tuesday, hopefully an answer, Im falling in to a depression though I can feel it, I want our lives back, I miss Jack, he is getting these major mood swings where I just have to walk away , I try to keep busy I don;t work anymore because I need to be here for Jack so I started working on a quilt for Jack hopefully that will keep me from going totally crazy

    but we all have to hang in there
  • pattynonews
    pattynonews Member Posts: 176
    #11
    carolinagirl67 said:

    I'm tired too!
    Hey Patty,

    I hear you about being tired. Earl is at home but I still know he needs me there and I have to go to work everyday. I am tired all the time even though I get enough sleep. I guess it's because we have so much on our mind. I am glad Jack is doing a little better. I am just taking it one day at a time too. I try not to think too far in the future, just enjoy today. I can't wait til the day when I can see him smile again. He looks so sad and tired. We are halfway done with treatment. I pray Jack gets better and I will keep you in my prayers too.

    Donna

    another setback
    well we neve got to start the new trial study , Jack's port got infected and he was in the hospital so we are just waiting , what exactly we are waiting for I don't know, I get so angry, I am blessed Jack does get around and he actually played the drums the other night, but we don;t know what the cancer is doing, we are in limbo, what is the next step we go back to the doctors on Tuesday, hopefully an answer, Im falling in to a depression though I can feel it, I want our lives back, I miss Jack, he is getting these major mood swings where I just have to walk away , I try to keep busy I don;t work anymore because I need to be here for Jack so I started working on a quilt for Jack hopefully that will keep me from going totally crazy

    but we all have to hang in there

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