chemo for the rest of life

13

Comments

  • New Flower
    New Flower Member Posts: 4,294
    JackieA said:

    chemo
    I don't know where I read this, but I know it was here. You asked me something about hormone. No he is not able to do the hormonal drugs such as tamoxiphen...or chemo pill. He has been told that he doesn't respond. I don't know how much longer he will be able to do halaven. For a while, almost six months, he was doing great. Suddenly he is losing the usage of his hands, and he is becoming weaker in his legs- already on the walker. Needs it to keep from falling. This week is the roughest one in a while.. We asked for a break, and the dr said no, its keeping him alive. I guess I am so concerned about how long will his body be able to take it, when it is already fragile. Very. He gets neupogen and neulasta with every treatment. He is an anemic. Like I said...he gets xgeva for bone, used to get zometa. Also gets Avastin. Can't think of what else.

    Thank you so kindly for your encouragement and allowing us to share. The good thing about this is that I don't feel alone when there are people we can talk to. Thank you.

    Jackie thanks for the update
    I wish your doctor could give your husband a break, so both can enjoy being around or take a little vacation and see interesting places.
    I would seek a second opinion and also look at palliative care to help with side effects and quality of life issues.
    Sending positive thoughts and prayers.
  • epark
    epark Member Posts: 339
    JackieA said:

    thank you
    Thank you for your responses...Everyone. I am humbled and grateful.

    Jackie... just wanted you to
    Jackie... just wanted you to know you and your husband are in my thoughts & prayers.

    tons of hugs and god bless

    Eva
  • JackieA
    JackieA Member Posts: 150
    epark said:

    Jackie... just wanted you to
    Jackie... just wanted you to know you and your husband are in my thoughts & prayers.

    tons of hugs and god bless

    Eva

    everyone
    I sooo appreciate you and your heartfelt acknowledgement. Well, today has been a little rough. The last few days have. He keeps pushing although he is in a tremendous amount of pain lately. Sometimes I just don't know what to do. A lot of times he doesn't want to be around us. It has been some months since he has had this hurting and blahs. Back in May he was hospitalized for excessive pain and shortness of breath... Well now, he just won't tell me when he is hurting. I can sense it though. I wish I knew how to help him. I don't know why he won't tell the dr how he is really feeling. Thnk you everyone again, for your support.
  • JackieA
    JackieA Member Posts: 150

    Chemo for Life
    Dear JackieA, I talked to my oncoligist today about your husband's chemo treatments and she confermed that he will be on some kind of chemo the rest of his life. She wanted to know if they had given your husband Tamoxefin or Aromatase Inhibitors? My onc said that the Xgeva that your husband is taking is for people that don't respond to harmone treatments. Is his cancer Harmone Negitive Reseptive?

    I hope & pray that you and your husband get through this tough time with as few problems as you both can manage. If he feels like talking to someone that is going through the same thing as him, just have him(or you) private message me here.

    When I was diagnoised Stage-3 back in 2007, I thought that I would stay that way forever. Today I found out that I am also Stage-4 because of the bone mets. Who knew that you could graduate to new levels. My onc has me on a Aromatase inhibitor(Famera) right now, plus the Zometa infusions once a month for bone strength. I did not ask her if I would be on these for the rest of my life? Although,I intend to do whatever it takes to keep LIVING! "The Rest Of My Life" could be a few weeks, a few months or whatever. The optimal word here is "LIFE"! I keep telling my wife that we all have to go sometime. When it's my turn,just have me Mummified & stand me in the corner. HA! I don't think she will do it,though. She said that she's not going to want to dust something else. HA! Ha! Ha!

    (((Hugs))) Robert

    Robert
    I want to thank you for asking the dr about his situation. Well, he can not do hormone meds. He is stage iv. The cancer mestasized to every bone in his body, and his entire spine was engulfed with mets. Recently it went to his knee. He has had radiation to skull (tumor at base), to hips 2 times. First round in 2005 he had masectomy. If you can answer this, I would appreciate it...He has several cases of pleural effusion. In May we were told that he had slow growing cancer in lung (the dr. thought). Tumor in nodule pressing against his trachea- cause of shortness of breath. It has come back--the shortness of breath. I am frustrated because when my husband sees his dr he pretends that all is well. He never tells him about how he feels. He takes his meds just before he sees the dr and they perk him up...laughs and talks with the dr...then they check his blood to see if his counts are okay...I believe that the neulasta and the neupogen is masking it, but I don't know...and that's it. he has not had scans since May. We were told that it was stable..but mixed signals because he went in the hospital in May and was told prior info I just shared. To me, just to me, it seems like he is declining, but my husband did request not to hear any bad news. The dr, did share with me in May that we were buying time. Does this make sense. Sorry to put this on you. If you don't feel comfortable, I truly understand.
  • New Flower
    New Flower Member Posts: 4,294
    JackieA said:

    everyone
    I sooo appreciate you and your heartfelt acknowledgement. Well, today has been a little rough. The last few days have. He keeps pushing although he is in a tremendous amount of pain lately. Sometimes I just don't know what to do. A lot of times he doesn't want to be around us. It has been some months since he has had this hurting and blahs. Back in May he was hospitalized for excessive pain and shortness of breath... Well now, he just won't tell me when he is hurting. I can sense it though. I wish I knew how to help him. I don't know why he won't tell the dr how he is really feeling. Thnk you everyone again, for your support.

    Jackie your story breaks my heart
    I think you should talk to his doctor. I also think you and your husband need to find a good palliative care team, which will help both of you physically and emotionally. Pain management is very important as well as phycological support and help. The doctor seems to be clueless about his patient and how much burden the disease brings to your family and quality of life. As much time as the doc is buying it should days filled with something good and enjoyable moments.
    Please keep coming back talk and to us.
    Sending positive thoughts and prayers
    New Flower
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    JackieA said:

    everyone
    I sooo appreciate you and your heartfelt acknowledgement. Well, today has been a little rough. The last few days have. He keeps pushing although he is in a tremendous amount of pain lately. Sometimes I just don't know what to do. A lot of times he doesn't want to be around us. It has been some months since he has had this hurting and blahs. Back in May he was hospitalized for excessive pain and shortness of breath... Well now, he just won't tell me when he is hurting. I can sense it though. I wish I knew how to help him. I don't know why he won't tell the dr how he is really feeling. Thnk you everyone again, for your support.

    Could you talk to his doctor
    Could you talk to his doctor and tell him about this Jackie? I feel so sorry that you two are going thru this.

    You're such a good wife and I know how much this must hurt you to see him in pain.


    We're here for you always Jackie and your husband. Please keep updating us.


    Hugs and prayers,

    Debby
  • Noel
    Noel Member Posts: 3,095 Member

    Jackie your story breaks my heart
    I think you should talk to his doctor. I also think you and your husband need to find a good palliative care team, which will help both of you physically and emotionally. Pain management is very important as well as phycological support and help. The doctor seems to be clueless about his patient and how much burden the disease brings to your family and quality of life. As much time as the doc is buying it should days filled with something good and enjoyable moments.
    Please keep coming back talk and to us.
    Sending positive thoughts and prayers
    New Flower

    I agree with the others
    I agree with the others Jackie, please talk to his doctor. There has to be some way that they can manage your husband's pain and make him comfortable.

    I am so sorry and I am here to support you and be a listening ear when you need one.


    Praying,

    Noel
  • ManWithaMission
    ManWithaMission Member Posts: 497
    JackieA said:

    Robert
    I want to thank you for asking the dr about his situation. Well, he can not do hormone meds. He is stage iv. The cancer mestasized to every bone in his body, and his entire spine was engulfed with mets. Recently it went to his knee. He has had radiation to skull (tumor at base), to hips 2 times. First round in 2005 he had masectomy. If you can answer this, I would appreciate it...He has several cases of pleural effusion. In May we were told that he had slow growing cancer in lung (the dr. thought). Tumor in nodule pressing against his trachea- cause of shortness of breath. It has come back--the shortness of breath. I am frustrated because when my husband sees his dr he pretends that all is well. He never tells him about how he feels. He takes his meds just before he sees the dr and they perk him up...laughs and talks with the dr...then they check his blood to see if his counts are okay...I believe that the neulasta and the neupogen is masking it, but I don't know...and that's it. he has not had scans since May. We were told that it was stable..but mixed signals because he went in the hospital in May and was told prior info I just shared. To me, just to me, it seems like he is declining, but my husband did request not to hear any bad news. The dr, did share with me in May that we were buying time. Does this make sense. Sorry to put this on you. If you don't feel comfortable, I truly understand.

    Jackie,
    First off, would you tell me your husbands first name? Could you also tell us where you are living? We have Pink Ladies all over the country, even in Canada. Maybe some here might live close to you.

    To try to answer you question, yes, it sounds like you are getting mixed signals. Maybe your husbands medications are masking his counts. But then again, maybe they are not. Due to his condition, I don't think he could be hiding anything from his doctors. If your husband won't talk about his feeling, maybe you should talk to he doctor.Some of the ladies on this board have mentioned Palliative Care. I don't really know what this is, but maybe it's like hospice. Have you checked into that, they can be very helpful to you with him at home.

    Would you want to know about your husbands prognosis, or can his doctors even tell you anything, since your husband requested not to hear any bad news. That's probably why they talk and joke with him at his visits. His doctor told you that your husband was stable, yet you don't understand why he hasn't had any scams since May. His doctor told you then that they were just buying time. Maybe that is all they can do.

    It is always difficult to watch someone you love and care for deteriorate right in front of you. I am sure you are very frustrated because you can't ease his pain. I wish I had the words to help you and your husband through this difficult time. My heart is breaking for you as I write this, but I am very glad you have reached out to me and all the ladies on this board. I am hear to help you carry your burdens, I have very broad shoulders.

    Please continue to come back on this sight and inform us as to you and your husbands condition. All our prayers are with you and him, Robert
  • JackieA
    JackieA Member Posts: 150

    Jackie,
    First off, would you tell me your husbands first name? Could you also tell us where you are living? We have Pink Ladies all over the country, even in Canada. Maybe some here might live close to you.

    To try to answer you question, yes, it sounds like you are getting mixed signals. Maybe your husbands medications are masking his counts. But then again, maybe they are not. Due to his condition, I don't think he could be hiding anything from his doctors. If your husband won't talk about his feeling, maybe you should talk to he doctor.Some of the ladies on this board have mentioned Palliative Care. I don't really know what this is, but maybe it's like hospice. Have you checked into that, they can be very helpful to you with him at home.

    Would you want to know about your husbands prognosis, or can his doctors even tell you anything, since your husband requested not to hear any bad news. That's probably why they talk and joke with him at his visits. His doctor told you that your husband was stable, yet you don't understand why he hasn't had any scams since May. His doctor told you then that they were just buying time. Maybe that is all they can do.

    It is always difficult to watch someone you love and care for deteriorate right in front of you. I am sure you are very frustrated because you can't ease his pain. I wish I had the words to help you and your husband through this difficult time. My heart is breaking for you as I write this, but I am very glad you have reached out to me and all the ladies on this board. I am hear to help you carry your burdens, I have very broad shoulders.

    Please continue to come back on this sight and inform us as to you and your husbands condition. All our prayers are with you and him, Robert

    Robert
    You are right about the mixed signals. We were told he couldn't come off the halaven because it is keeping him alive. Okay. We were told his blood work looks great 2 treatments ago, so my husband asked what does this bloodwork tell us. We were told it is just a guide (lack of word) that tells them how his blood is responding to treatment. It does not tell us anything about the cancer--does that make sense? So we wondered okay, what does? We were told that test was unreliable, and they dont really look at that. So the next question my husband had was, how do you tell how the cancer is doing...the response was, by the way you feel until we do a scan, which is coming in a few weeks. Well, my issue is that lately he has been horrible. He has not been totally honest with the dr. So tonight and for the past 2 weeks he has had chest pain and it hurts to cough. He has gotten weaker and weaker. He takes the happy pills before going to the dr. and put on a good front. Doesn't tell about the pain or anything. weight averages around 158 or so. He has had a lot of fluid lately. I read somewhere Halaven does that. I told the dr back in May, I just want to know the truth about my husband's condition. It has been a rollercoaster because I feel in the dark. I see other cancer patients looking well gaining weight, but my husband has declined significantly since last year. I love him sooo much, but I am a realist...hopeful, but all things considered...realist. By the way, we are from Cordova, TN. Husband is Kip. Thank you so much for your thoughts, for sharing. I appreciate all of the acknowledgment...thanks a million.
  • gami43
    gami43 Member Posts: 281
    DebbyM said:

    Could you talk to his doctor
    Could you talk to his doctor and tell him about this Jackie? I feel so sorry that you two are going thru this.

    You're such a good wife and I know how much this must hurt you to see him in pain.


    We're here for you always Jackie and your husband. Please keep updating us.


    Hugs and prayers,

    Debby

    Jackie - I want you and Kip
    Jackie - I want you and Kip to know that you are in my
    thoughts and prayers. God bless you both.

    Love & warm hugs, Teresa
  • Alexis F
    Alexis F Member Posts: 3,598
    gami43 said:

    Jackie - I want you and Kip
    Jackie - I want you and Kip to know that you are in my
    thoughts and prayers. God bless you both.

    Love & warm hugs, Teresa

    I'm sending more hope,
    I'm sending more hope, support, encouragement, hugs and prayers to you Jackie and your husband.

    Lex
  • merianne
    merianne Member Posts: 4
    JackieA said:

    Chemo for life
    Thank you so much for your concern and input. I am thankful that my disease has slowed tremendously. HOwever he has lost over a hundred pounds and is on a walker. He can not walk up stairs and without his walker. Currently he is taking Xgeva for bones, Halaven, Avastin, and neulasta and neupogen. All of these are powerful drugs. I wonder if these drugs are making him look like this old person(excuse me for elderly). He is hoarse all the time. At one time he was having so much trouble breathing. He is on dilaudid and the fentyl patch 75 mg. Does anyone know about that? His neurothapy is so severe. He also takes gaberpentin. He had mets at the bottom of his skull pressing on a trigeminal nerve. He has had radiation in both hips, on his skull- and his entire spine was engulfed with mets. He had it in his sternum and his ribs---Has had a masectomy...

    When I read over all of this, I am still grateful, because at one time he could not get out of pain. He went to the hospital in May to bring his pain under control, and when they did, he is much tolerable. We went through bouts of him falling in the middle of anyplace. He finally surrendered and took the walker. He does not drive but he wants to so bad.

    THANK YOU FOR your encouraging words!

    chemo for life
    Jackie, I can understand how worried you must be for your husband. I know the feeling of not feeling like you can help. My mother had breast cancer in her forties. I had my first bout in 92, then another in 2002 and now in 2011. Mine have been exactly nine years apart. I have bone metastisis too, in my pelvic bone and others are right when they say they simply try to stave it off. In my case I am lucky in that Femara is working for me as well as Zometa. I eventually will probably be on a walker as well and that is the best idea to not fall. If he does, then he will end up with broken bones and that would not be a good thing. If you are having problems with self help issues for him, tell your doctor. Most insurance plans will pay for a nurse to come in or even a helper to give you a break. Your sanity will help him deal with what he is going through. Men are very sensitive about that. My dad was very upset with forgetting things when he had alzeimers and my mom took care of him but when she got pancreatic cancer, we moved both of them into care. My mom into hospice because it was necessary and my dad to a wonderful home that had lots of caring people and hospice as well. At some time, you and your husband will have to make the decision of quality of life issues over treatment. I didn't want to talk about that but my brother being the doctor that he is, told me that. There is always hope and healing but within that is also being realistic. Do the things now so that if things get worse, they are already done. Get a power of attorney, a living will, a will or a trust set up and other arrangements. Most of all, keep some time to yourself. I know that it seems like you are not there for him at those times but it is important for you to take care of you. I feel during my treatment that I have gotten more frail and I watch what I do. You might want to talk to the doctor if he is going upstairs to see if modifications need to be made. Most of all, I pray that you don't take offense at me speaking so bluntly but I'm stage four as well and they tell me they will stave it off as long as they can. I hope that he is taking the pain medication that they give him. Men are stubborn that way, but as my brother, who like I said is a doctor tells me that it takes less medicine if you keep it constant than if you have to take a huge dose because it's gotten to painful. Ask your doctor about help at home. I'm sure he will be glad to help. Love, Merianne
  • MellieMc
    MellieMc Member Posts: 35
    Alexis F said:

    I'm sending more hope,
    I'm sending more hope, support, encouragement, hugs and prayers to you Jackie and your husband.

    Lex

    Prayers for you.
    I will keep you in my prayers.
  • JackieA
    JackieA Member Posts: 150
    merianne said:

    chemo for life
    Jackie, I can understand how worried you must be for your husband. I know the feeling of not feeling like you can help. My mother had breast cancer in her forties. I had my first bout in 92, then another in 2002 and now in 2011. Mine have been exactly nine years apart. I have bone metastisis too, in my pelvic bone and others are right when they say they simply try to stave it off. In my case I am lucky in that Femara is working for me as well as Zometa. I eventually will probably be on a walker as well and that is the best idea to not fall. If he does, then he will end up with broken bones and that would not be a good thing. If you are having problems with self help issues for him, tell your doctor. Most insurance plans will pay for a nurse to come in or even a helper to give you a break. Your sanity will help him deal with what he is going through. Men are very sensitive about that. My dad was very upset with forgetting things when he had alzeimers and my mom took care of him but when she got pancreatic cancer, we moved both of them into care. My mom into hospice because it was necessary and my dad to a wonderful home that had lots of caring people and hospice as well. At some time, you and your husband will have to make the decision of quality of life issues over treatment. I didn't want to talk about that but my brother being the doctor that he is, told me that. There is always hope and healing but within that is also being realistic. Do the things now so that if things get worse, they are already done. Get a power of attorney, a living will, a will or a trust set up and other arrangements. Most of all, keep some time to yourself. I know that it seems like you are not there for him at those times but it is important for you to take care of you. I feel during my treatment that I have gotten more frail and I watch what I do. You might want to talk to the doctor if he is going upstairs to see if modifications need to be made. Most of all, I pray that you don't take offense at me speaking so bluntly but I'm stage four as well and they tell me they will stave it off as long as they can. I hope that he is taking the pain medication that they give him. Men are stubborn that way, but as my brother, who like I said is a doctor tells me that it takes less medicine if you keep it constant than if you have to take a huge dose because it's gotten to painful. Ask your doctor about help at home. I'm sure he will be glad to help. Love, Merianne

    Merianne
    Hi, Thanks for your input. Actually, he can not walk upstairs. He has been upstairs once since May. My husband used to fall all the time. Thank God he did not break any bones- I know about 30 times in 6 months. He has fallen on our floor, dr. office, parking lot, stores, early mornings, middle of day. Standing up and his legs goes out. I think this is from the mets in his spine. One of his arms/hands looks like someone who is paralyzed-now he is losing the usage of the other one. I think his body has gotten use to the meds he is taking. Gabepentin, dilaudid, and fentanyl patches. He is very short of breath now. Anyway, I am going to call the dr before our next appointment. I told him last night that I was not going to allow him to just sit around and be miserable. He tires out just fixing a plate. Now, he had been that way before...before he started Halaven. For the past 6 months he has done well on halaven. But this last month, things are changing and it is one rollercoaster ride!
  • jnl
    jnl Member Posts: 3,869 Member
    JackieA said:

    Robert
    You are right about the mixed signals. We were told he couldn't come off the halaven because it is keeping him alive. Okay. We were told his blood work looks great 2 treatments ago, so my husband asked what does this bloodwork tell us. We were told it is just a guide (lack of word) that tells them how his blood is responding to treatment. It does not tell us anything about the cancer--does that make sense? So we wondered okay, what does? We were told that test was unreliable, and they dont really look at that. So the next question my husband had was, how do you tell how the cancer is doing...the response was, by the way you feel until we do a scan, which is coming in a few weeks. Well, my issue is that lately he has been horrible. He has not been totally honest with the dr. So tonight and for the past 2 weeks he has had chest pain and it hurts to cough. He has gotten weaker and weaker. He takes the happy pills before going to the dr. and put on a good front. Doesn't tell about the pain or anything. weight averages around 158 or so. He has had a lot of fluid lately. I read somewhere Halaven does that. I told the dr back in May, I just want to know the truth about my husband's condition. It has been a rollercoaster because I feel in the dark. I see other cancer patients looking well gaining weight, but my husband has declined significantly since last year. I love him sooo much, but I am a realist...hopeful, but all things considered...realist. By the way, we are from Cordova, TN. Husband is Kip. Thank you so much for your thoughts, for sharing. I appreciate all of the acknowledgment...thanks a million.

    Prayers for you and
    Prayers for you and Kip!


    Hugs, Leeza
  • ManWithaMission
    ManWithaMission Member Posts: 497
    JackieA said:

    Robert
    You are right about the mixed signals. We were told he couldn't come off the halaven because it is keeping him alive. Okay. We were told his blood work looks great 2 treatments ago, so my husband asked what does this bloodwork tell us. We were told it is just a guide (lack of word) that tells them how his blood is responding to treatment. It does not tell us anything about the cancer--does that make sense? So we wondered okay, what does? We were told that test was unreliable, and they dont really look at that. So the next question my husband had was, how do you tell how the cancer is doing...the response was, by the way you feel until we do a scan, which is coming in a few weeks. Well, my issue is that lately he has been horrible. He has not been totally honest with the dr. So tonight and for the past 2 weeks he has had chest pain and it hurts to cough. He has gotten weaker and weaker. He takes the happy pills before going to the dr. and put on a good front. Doesn't tell about the pain or anything. weight averages around 158 or so. He has had a lot of fluid lately. I read somewhere Halaven does that. I told the dr back in May, I just want to know the truth about my husband's condition. It has been a rollercoaster because I feel in the dark. I see other cancer patients looking well gaining weight, but my husband has declined significantly since last year. I love him sooo much, but I am a realist...hopeful, but all things considered...realist. By the way, we are from Cordova, TN. Husband is Kip. Thank you so much for your thoughts, for sharing. I appreciate all of the acknowledgment...thanks a million.

    Jackie
    I have been thinking about you and your husband,Kip. I am still working on a reply for you, please be patient with me. Thanks. Robert
  • jnl
    jnl Member Posts: 3,869 Member

    Jackie
    I have been thinking about you and your husband,Kip. I am still working on a reply for you, please be patient with me. Thanks. Robert

    How are you doing
    How are you doing Robert?


    Leeza
  • Megan M
    Megan M Member Posts: 3,000
    JackieA said:

    thank you
    Thank you for your responses...Everyone. I am humbled and grateful.

    Jackie, you and Kip are in
    Jackie, you and Kip are in my prayers. Please do keep updating us and please take care of yourself!


    Hugs, Megan
  • Noel
    Noel Member Posts: 3,095 Member
    epark said:

    Jackie... just wanted you to
    Jackie... just wanted you to know you and your husband are in my thoughts & prayers.

    tons of hugs and god bless

    Eva

    Sending lots and lots of
    Sending lots and lots of prayers for you Jackie and your husband and to you also Robert!
  • Angie2U
    Angie2U Member Posts: 2,991
    JackieA said:

    thank you
    Thank you for your responses...Everyone. I am humbled and grateful.

    Please keep posting so we
    Please keep posting so we know how you and Kip are doing.

    Prayers and best wishes,


    Angie