chemo for the rest of life

JackieA
JackieA Member Posts: 150
Is there anyone here who has to have chemo for the rest of your life? Any stories? My husband has stage 4 breast with mets to all bones. We have been on chemo since 2009 with no breaks. Every 21 days. I have watch the disease change him physically. He was 41 when he had a reocurrence, now he looks like an eighty year old man and is on a walker.I just want to know if this is normal? will he ever come off?
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Comments

  • roseann4
    roseann4 Member Posts: 992 Member
    So sorry to hear about your husband.
    With stage 4 they treat it as a chronic disease and try whatever they can to stop the progression. There are many sisters who can give you better information. I just wanted to let you know that I read your message and admire what you are doing for your husband.

    Roseann
  • ManWithaMission
    ManWithaMission Member Posts: 497
    Chemo for Life
    Dear Jackie, I was diagnoised with Stage 3 breast cancer in Seotember 2007.I had a left breast mascetomy,radiation for 2 months and chemo of Taxotier & Cytoxin for 6 months. Then I was put on Tamoxifen for the next 5 years. In January 2011, I was diagnoised with bone metastisis. I had 3 weeks of radiation & my oncoligest changed my harmone treatment to Famera. I have also had a monthly infusion of Zomteta since January. Because of the bone mets, I was forced to retire from work and I also use a walker to get around with,too.

    I am not on chemo right now,but my oncoligest says that that is still an option. I'm not sure why your husband is on chemo for life, but I'll ask my oncoligest on Nov. 3rd when I see her.I'm very sorry that your husband is going through this because it is not fun for any of us, especilly for the caregivers. I know it is not easy for you to watch him go through this because you care for him so much, it hurts you also because you fell so helpless to do anything to ease his pain. Just being there IS enough! I hope this helps and if he needs to talk,I'll be here.

    Sincerely,Robert
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    roseann4 said:

    So sorry to hear about your husband.
    With stage 4 they treat it as a chronic disease and try whatever they can to stop the progression. There are many sisters who can give you better information. I just wanted to let you know that I read your message and admire what you are doing for your husband.

    Roseann

    I am so sorry Jackie.. Just
    I am so sorry Jackie.. Just want you to know that I am praying for your husband and for you.


    Sue :(
  • camul
    camul Member Posts: 2,537

    Chemo for Life
    Dear Jackie, I was diagnoised with Stage 3 breast cancer in Seotember 2007.I had a left breast mascetomy,radiation for 2 months and chemo of Taxotier & Cytoxin for 6 months. Then I was put on Tamoxifen for the next 5 years. In January 2011, I was diagnoised with bone metastisis. I had 3 weeks of radiation & my oncoligest changed my harmone treatment to Famera. I have also had a monthly infusion of Zomteta since January. Because of the bone mets, I was forced to retire from work and I also use a walker to get around with,too.

    I am not on chemo right now,but my oncoligest says that that is still an option. I'm not sure why your husband is on chemo for life, but I'll ask my oncoligest on Nov. 3rd when I see her.I'm very sorry that your husband is going through this because it is not fun for any of us, especilly for the caregivers. I know it is not easy for you to watch him go through this because you care for him so much, it hurts you also because you fell so helpless to do anything to ease his pain. Just being there IS enough! I hope this helps and if he needs to talk,I'll be here.

    Sincerely,Robert

    Chemo for life our until your body says no....
    I thought I was on chemo for life, but after 9 months of chemo 3x a month, my onco decided it was time to take a break. I was very hesitant and questioned this as I figured it was the only thing keeping me here. But now I have been off for 6 weeks and I am liking the break. On my last appointment, chemo wasn't mentioned which makes me wonder... I will have scans in December and will make a determination at that time.

    Honestly, now that I am not on chemo I am realizing how much of that 9 months were lost. I am thinking quality over quantity. If I just didn't get so dang sick and worn down from the chemo. I just wish there was not so much bone pain. It is now keeping me up at night! It is in almost every bone, but the spine, tailbone and ribs are the most painful.

    I am still getting Xgeva shot once a month for the bones and I am on Evista to block the Estrogen. I take Tylenol 3 for pain (sometimes I will take an oxy when it gets unbearable), and can't sleep without Atavan. So life is still not perfect. I am not in a walker, but use my electric chair when I have to walk any distance, and if I do go down I cant get back up as the cancer has wiped out any strength in my legs and back.

    So, chemo for life is to keep the cancer stable! Yes the chemo ages our bodies, but I will keep up the hope that the chemo will keep me stable enough to be here when they do find something that will make it chronic rather than terminal.

    I will keep you both in my prayers.
  • debi.18
    debi.18 Member Posts: 850 Member
    No stories
    Jackie, but just wanted to let you know you and your husband are in my thoughts and prayers.

    I so hope and pray for a cure soon so no one has to endure this!

    Hugs,
    Debi
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    debi.18 said:

    No stories
    Jackie, but just wanted to let you know you and your husband are in my thoughts and prayers.

    I so hope and pray for a cure soon so no one has to endure this!

    Hugs,
    Debi

    Jackie
    Sorry to hear about your husband being on chemo for the rest of his life. Maybe eventually he will be in remission and they can stop but now they must see no future unless things get better.If they were to stop and it came back soon after they made a mistake. They don't want to take chances.

    I read of a situation not far from me.A lady was dx with breast cancer and then 5 months later her husband was dx with bc.She is still living and he passed away in July after 1 1/2 years. Cancer in men is harder to detect. Usually when a man is dx it is in the late stages.The warning for this man was his steering wheel hurt to put on.Then he went to the doctor.

    I didn't need chemo.Non invasive localized bc but those who get it are living longer.My friend is a 16 year survivor and doing great.She had chemo for over a year. She was Stage 3. Had a lumpectomy which concerned me but she is fine.

    People are living longer. Wishing the best for you and your husband.

    Lynn Smith
  • JackieA
    JackieA Member Posts: 150

    Jackie
    Sorry to hear about your husband being on chemo for the rest of his life. Maybe eventually he will be in remission and they can stop but now they must see no future unless things get better.If they were to stop and it came back soon after they made a mistake. They don't want to take chances.

    I read of a situation not far from me.A lady was dx with breast cancer and then 5 months later her husband was dx with bc.She is still living and he passed away in July after 1 1/2 years. Cancer in men is harder to detect. Usually when a man is dx it is in the late stages.The warning for this man was his steering wheel hurt to put on.Then he went to the doctor.

    I didn't need chemo.Non invasive localized bc but those who get it are living longer.My friend is a 16 year survivor and doing great.She had chemo for over a year. She was Stage 3. Had a lumpectomy which concerned me but she is fine.

    People are living longer. Wishing the best for you and your husband.

    Lynn Smith

    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!
  • catowner
    catowner Member Posts: 50
    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!

    I am so sorry to hear about
    I am so sorry to hear about your husband and yourself. I hope and pray the cure will come soon. I will keep you two in my prayers. There are many people out there who are praying for all of us. Hugs, Debbie
  • Alexis F
    Alexis F Member Posts: 3,598
    debi.18 said:

    No stories
    Jackie, but just wanted to let you know you and your husband are in my thoughts and prayers.

    I so hope and pray for a cure soon so no one has to endure this!

    Hugs,
    Debi

    Also sending lots of prayers
    Also sending lots of prayers and big hugs to you and your husband.


    Hugs, Lex
  • butterflylvr
    butterflylvr Member Posts: 944
    Alexis F said:

    Also sending lots of prayers
    Also sending lots of prayers and big hugs to you and your husband.


    Hugs, Lex

    Aww Jackie,
    I too want to send along my love and support to both you and your husband. We have some loving pink brothers here that can relate to what your husband is going through. He is blessed to have such a loving wife by his side, I feel equally as blessed having my husband David. Stay strong for him... and we are here for you.

    Hugs,
    Lorrie
  • DianeBC
    DianeBC Member Posts: 3,881 Member
    debi.18 said:

    No stories
    Jackie, but just wanted to let you know you and your husband are in my thoughts and prayers.

    I so hope and pray for a cure soon so no one has to endure this!

    Hugs,
    Debi

    I've never had chemo Jackie.
    I've never had chemo Jackie. I just want to tell you that I am praying for your husband and ofcourse for you also.


    Big hugs!
  • JackieA
    JackieA Member Posts: 150
    DianeBC said:

    I've never had chemo Jackie.
    I've never had chemo Jackie. I just want to tell you that I am praying for your husband and ofcourse for you also.


    Big hugs!

    Thank you so much!
    Thank you for the love....
  • JackieA
    JackieA Member Posts: 150
    DianeBC said:

    I've never had chemo Jackie.
    I've never had chemo Jackie. I just want to tell you that I am praying for your husband and ofcourse for you also.


    Big hugs!

    Thank you so much!
    Thank you for the love....
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    DianeBC said:

    I've never had chemo Jackie.
    I've never had chemo Jackie. I just want to tell you that I am praying for your husband and ofcourse for you also.


    Big hugs!

    Gentle hugs for you, and your husband Jackie ...
    my heart aches for you two. Prayers of hope and strength.

    Camul and ManwithaMission offer up the best advise I've ever read, or research. I hope this provides some type of comfort to you and your hubby.

    Best of luck and positive thoughts.

    Vicki Sam
  • Kylez
    Kylez Member Posts: 3,761 Member
    VickiSam said:

    Gentle hugs for you, and your husband Jackie ...
    my heart aches for you two. Prayers of hope and strength.

    Camul and ManwithaMission offer up the best advise I've ever read, or research. I hope this provides some type of comfort to you and your hubby.

    Best of luck and positive thoughts.

    Vicki Sam

    This is so sad and I am so
    This is so sad and I am so sorry Jackie. Prayers for you and your husband.


    Hugs, Kylez
  • JackieA
    JackieA Member Posts: 150
    Kylez said:

    This is so sad and I am so
    This is so sad and I am so sorry Jackie. Prayers for you and your husband.


    Hugs, Kylez

    I appreciate everything!
    I want to thank you for your encouraging words. We will continue to hope for the best and live! each day. I know that it is a fight, but each day is a blessing. Thank you.
  • Alexis F
    Alexis F Member Posts: 3,598
    JackieA said:

    I appreciate everything!
    I want to thank you for your encouraging words. We will continue to hope for the best and live! each day. I know that it is a fight, but each day is a blessing. Thank you.

    Each day is a blessing
    Each day is a blessing Jackie and never give up, there is always hope!


    Hugs and lots of prayers to you and your family,


    Lex
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    Warriors of all kinds
    There are warriors of all kinds here. I guess the best thing to do is to listen to your husband on his level of tolerance for this extended length of chemo treatment regimen. The doctor may eventually suggest a break at some point in time. as you heard another here speak of. The most important questions you and your husband should ask are these; How well is this treatment regimen tolerated? Is there a point where we can give more time between treatments? Is there a chance for a chemo treatment holiday? At present I can't think of any other questions but if I have overlooked an important one I am sure another will chime in. Just decide these matters carefully, taking your husbands thoughts and feelings as the top matter for consideration.

    You and hubby will definately be on my prayer list.
  • ManWithaMission
    ManWithaMission Member Posts: 497
    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
  • mwallace1325
    mwallace1325 Member Posts: 806

    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

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

    marge