Please help with advice

dscott
dscott Member Posts: 35
edited March 2014 in Lung Cancer #1
Our doctor told me Monday night that is time for hospice for John. He has stage 4 non small cell lung with met to bone. I feel like I can not deal with this but I know it is the best thing for him and that is the most important thing. He has really just gone down hill tremendously in the last month. The reason I am writing is I was wondering if anyone knows anyone that has improved during hospice. I guess I can not give up hope...He had 6 rounds of chemo avastin taxol and carboplatin...Limited rad of neck and shoulder and only one treatment of zometa. I can not help wondering if we should try something else....

Comments

  • trft
    trft Member Posts: 48
    #2
    That's really tough stuff. I know when I was first dx'd I got another opinion, and I'm glad I did. I'm almost three years post tx, and if my cancer came back was mets to the bone and/or somwewhere, and doctor tells you it's time for hospice...I don't know what I would do in that situation. Crikers! It's just crazy, isn't it? I guess hope is a good thing. And I hope you and your husband do well. I know it must be hard.
  • dscott
    dscott Member Posts: 35
    #3
    trft said:

    That's really tough stuff. I know when I was first dx'd I got another opinion, and I'm glad I did. I'm almost three years post tx, and if my cancer came back was mets to the bone and/or somwewhere, and doctor tells you it's time for hospice...I don't know what I would do in that situation. Crikers! It's just crazy, isn't it? I guess hope is a good thing. And I hope you and your husband do well. I know it must be hard.

    tHANK YOU FOR YOUR KIND WORDS. iT SOMEHOW HELPS. i DO PRAY YOU NEVER HAVE TO GO THRU THIS. i HOPE YOU ARE DOING WELL NOW
  • conijo
    conijo Member Posts: 17
    #4
    dscott said:

    tHANK YOU FOR YOUR KIND WORDS. iT SOMEHOW HELPS. i DO PRAY YOU NEVER HAVE TO GO THRU THIS. i HOPE YOU ARE DOING WELL NOW

    I really wish I had a answer for you.. So I want you to know my thoughts and prayers will be with you.
    I'm no stranger to cancer or hospice.. I had cancer 2 times, my Mom had it, my Dad, my Mother in law (best friend) and now my hubby. it's so dang hard and painful. but somehow we get through it all.
  • dscott
    dscott Member Posts: 35
    #5
    conijo said:

    I really wish I had a answer for you.. So I want you to know my thoughts and prayers will be with you.
    I'm no stranger to cancer or hospice.. I had cancer 2 times, my Mom had it, my Dad, my Mother in law (best friend) and now my hubby. it's so dang hard and painful. but somehow we get through it all.

    Thank you for replying. Again it helps to come on here and read. Right now I feel like I can not breathe. I wish you all the luck with your husband. Tough is not the word for any of this but when the miracles do happen it is amazing. I believe all the survivors are truly miracles
  • conijo
    conijo Member Posts: 17
    #6
    dscott said:

    Thank you for replying. Again it helps to come on here and read. Right now I feel like I can not breathe. I wish you all the luck with your husband. Tough is not the word for any of this but when the miracles do happen it is amazing. I believe all the survivors are truly miracles

    I understand.. I feel so sick to my stomach today.. he goes to the lung doctor later and we get all the info on him...
    I'm a walking miracle myself, I only had 4 weeks to live and that was 30 years ago. They wrote me off but here I'am 53 and a grandma... There's always hope.
  • dscott
    dscott Member Posts: 35
    #7
    conijo said:

    I understand.. I feel so sick to my stomach today.. he goes to the lung doctor later and we get all the info on him...
    I'm a walking miracle myself, I only had 4 weeks to live and that was 30 years ago. They wrote me off but here I'am 53 and a grandma... There's always hope.

    Thank you again for your encouragement. Stories like yours give me hope. Please let me know about your husband. I know that sick feeling. I will be thinking of you.
  • conijo
    conijo Member Posts: 17
    #8
    dscott said:

    Thank you again for your encouragement. Stories like yours give me hope. Please let me know about your husband. I know that sick feeling. I will be thinking of you.

    Thank you.. it's nice to have someone who "understands".. I'm so scared because he could be very advanced. he only found this out because he broke a rib (somehow)..he is one who would never go to doctors. he has lost some weight and complaining of being tired. early today I had to tell our 3 kids the news, that was heart breaking but I was positive and up beat.
    I don't know how much longer he will be able to stay working, I think the doctor will have to put him on disabilty.
    Thanks again for writing me.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #9
    Doctors are used to helping folks get a second opinion and it sounds like you would benefit from getting one. Get out a map and see where the best university medical clinics for lung cancer are and make an immediate appointment just to be sure that you have done all that can be done. That will give you peace of mind even if they say your doctor is right. There is nothing wrong with deciding it is time to stop the chemo and surgery and nothing wrong with fighting cancer with every drug available. It is a choice and you need as much information as you can get to be able to make the right one for your family. Please ask about how to make him comfortable and have the best quality of life possible even if you choose no more active cancer treatment. An expert in end-stage cancer can advise you better than someone who rarely sees cancer patients. While doctors are supposed to wait until someone has a limited number of months left to live before they call in hospice (usually 6 months or less I think), there are certainly cases where even the experts have been wrong. Doctors are not gods that know the future. They can only make educated guesses based on past experience. Since the present is always changing, the future is not totally predictable. But even if John lives many, many more years, there are advantages to getting ready for the end by writing your will, straightening out the family finances, and preparing for what you will do if either one of you dies. My thoughts and prayers are with you.
  • dscott
    dscott Member Posts: 35
    #10
    conijo said:

    Thank you.. it's nice to have someone who "understands".. I'm so scared because he could be very advanced. he only found this out because he broke a rib (somehow)..he is one who would never go to doctors. he has lost some weight and complaining of being tired. early today I had to tell our 3 kids the news, that was heart breaking but I was positive and up beat.
    I don't know how much longer he will be able to stay working, I think the doctor will have to put him on disabilty.
    Thanks again for writing me.

    Conijo, I hope you found out today that it is not so advanced but even if it is there are so many people who react well to treatment. So much of what you say sounds like John but have faith not everyone has the same outcome as you can see. Please keep me informed. I would like to keep in contact with you...Debbie
  • dscott
    dscott Member Posts: 35
    #11
    cabbott said:

    Doctors are used to helping folks get a second opinion and it sounds like you would benefit from getting one. Get out a map and see where the best university medical clinics for lung cancer are and make an immediate appointment just to be sure that you have done all that can be done. That will give you peace of mind even if they say your doctor is right. There is nothing wrong with deciding it is time to stop the chemo and surgery and nothing wrong with fighting cancer with every drug available. It is a choice and you need as much information as you can get to be able to make the right one for your family. Please ask about how to make him comfortable and have the best quality of life possible even if you choose no more active cancer treatment. An expert in end-stage cancer can advise you better than someone who rarely sees cancer patients. While doctors are supposed to wait until someone has a limited number of months left to live before they call in hospice (usually 6 months or less I think), there are certainly cases where even the experts have been wrong. Doctors are not gods that know the future. They can only make educated guesses based on past experience. Since the present is always changing, the future is not totally predictable. But even if John lives many, many more years, there are advantages to getting ready for the end by writing your will, straightening out the family finances, and preparing for what you will do if either one of you dies. My thoughts and prayers are with you.

    Cabbott, Thank you so much for taking the time to write to me. I have been reading a lot of your posts. You give the best advice. Thank you again for your concern
  • conijo
    conijo Member Posts: 17
    #12
    dscott said:

    Cabbott, Thank you so much for taking the time to write to me. I have been reading a lot of your posts. You give the best advice. Thank you again for your concern

    Hi Debbie,
    How are you and your boyfriend doing?... That reply from Cabbott was great and so very true..
    My hubby only got to see the lung doctor who told us what we already knew, he still has to go in for the biopsy to see what kind of cancer it is, which will be this week then he sees the doctor Fri. all the steps and wasted time ya know..... Today I need see about hubby getting retirement disabilty so he can get some income and medicare.( I hope) he wont be able to work much longer.
  • dscott
    dscott Member Posts: 35
    #13
    conijo said:

    Hi Debbie,
    How are you and your boyfriend doing?... That reply from Cabbott was great and so very true..
    My hubby only got to see the lung doctor who told us what we already knew, he still has to go in for the biopsy to see what kind of cancer it is, which will be this week then he sees the doctor Fri. all the steps and wasted time ya know..... Today I need see about hubby getting retirement disabilty so he can get some income and medicare.( I hope) he wont be able to work much longer.

    Thank you so much for replying. I will be thinking of you and hope you continue to keep me posted on your husband. I hesitate to write about what is going on here as I do not want to bring you down. Just know there are so many people that do well with the treatment. I am afraid that is not going to be the outcome here. We have started with hospice as I know I can not close my eyes any longer as to what is going on with John. These words are so hard for me to write. I still will pray for something else to happen but have to face reality with what is going on for his sake as this is his story and I am the bystander.
    Finances can be so hard at this time so start preparing now like you said. It will be good if your husband can get treatment without worrying about money...Keep me posted
  • conijo
    conijo Member Posts: 17
    #14
    dscott said:

    Thank you so much for replying. I will be thinking of you and hope you continue to keep me posted on your husband. I hesitate to write about what is going on here as I do not want to bring you down. Just know there are so many people that do well with the treatment. I am afraid that is not going to be the outcome here. We have started with hospice as I know I can not close my eyes any longer as to what is going on with John. These words are so hard for me to write. I still will pray for something else to happen but have to face reality with what is going on for his sake as this is his story and I am the bystander.
    Finances can be so hard at this time so start preparing now like you said. It will be good if your husband can get treatment without worrying about money...Keep me posted

    Debbie... I want to thank you again for keeping in touch with me..you are helping me more than you know. My hope is that my hubby will do well with his treatments like his Mother did..she was in remission for 12 years after her lung cancer..
    I hope you are also taking care of you..
    I want you to know my prayers are with you

    Connie
  • dscott
    dscott Member Posts: 35
    #15
    conijo said:

    Debbie... I want to thank you again for keeping in touch with me..you are helping me more than you know. My hope is that my hubby will do well with his treatments like his Mother did..she was in remission for 12 years after her lung cancer..
    I hope you are also taking care of you..
    I want you to know my prayers are with you

    Connie

    Connie, Thank you again for replying. It really helps. There are so many great stories out there of people even stage 4 that have really done well. The things they can do now are unbelievable even compared to a couple of years ago. I am going to send you my email address thru ACS email so that if you want to keep in touch we can. I am a great sounding board and know all to well what you are going thru. So watch for it if you like and write me...Debbie
  • conijo
    conijo Member Posts: 17
    #16
    dscott said:

    Connie, Thank you again for replying. It really helps. There are so many great stories out there of people even stage 4 that have really done well. The things they can do now are unbelievable even compared to a couple of years ago. I am going to send you my email address thru ACS email so that if you want to keep in touch we can. I am a great sounding board and know all to well what you are going thru. So watch for it if you like and write me...Debbie

    That be great Debbie thank you
  • Donnamk1
    Donnamk1 Member Posts: 5
    #17
    God Bless you I know your struggle right now I have lost my little brother and Dad to lung cancer I too am now a survivor of the beast I was diagonosed 3/12 years ago have had my upper left lung lobe removed and went on taxol and carboplanin chemo as follow up so far so good there is always hope and continue to pray God will lead you as far as hospice yes I want them to come they help when it is time for peace and comfort they will quide you don't give up but accept the peace they can offer
  • arbrab
    arbrab Member Posts: 55
    #18
    I lost my husband 3-28-07 to non small cell carcinomia. We tired everything and we were going to start clinical trails when he gave up. It started with a small tumor on his right lung, and it never did go to the left. But, without xrays in the last month we never knew if he had it anywhere else. When we would take a shower he never let me wash his head. I don't know why, he never said. We also talked about hospice, but I think he didn't want to put me through anymore than he already had. I would have taken care of him forever. I don't know what to really say, I'm still on the mending end. Just don't give up. Tell him not to give up. My husband just didn't want to live with oxegen and being so tired he couldn't do the yard anymore. He had all the same chemo drugs as your husband and radiation too. Keep the faith. We have UC Davis here in California. It is the best. But we were too late. Look for a good University that deals in nothing but cancer. And pray that it's not to late. Tell him you love him. And be at peace with his decisions.
    barbra

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