Feeling hopeless

John Char
John Char Member Posts: 30
in Esophageal Cancer #1

In May The doctors gave my husband 2 to 4 months to live. My husband is still mowing our 2 ac yard, mows our 90 year old neighbors ditch for them and helps our 70 year old neighbors across the street. We never know when this is going to change because the chemo is starting to make him really sick. But as for now he is still helping everyone he can. Pray for God to give him the strength he needs and many more months or years to live.

Comments

  • dfd24
    dfd24 Member Posts: 91
    #2
    her2 positive and herceptin

    Hello,

    has your husband been tested for Her2? it is important because if he is positive he can get herceptin.

    other people will tell you that they survived way beyond what the doctors announced. every person is different and they can't really predict.

    also there are new treatments available if the chemo stops working or different combinations of chemo to try sometimes.

     

    wish you all the best ,

    danièle

  • Di
    Di Member Posts: 2
    #3
    dfd24 said:

    her2 positive and herceptin

    Hello,

    has your husband been tested for Her2? it is important because if he is positive he can get herceptin.

    other people will tell you that they survived way beyond what the doctors announced. every person is different and they can't really predict.

    also there are new treatments available if the chemo stops working or different combinations of chemo to try sometimes.

     

    wish you all the best ,

    danièle

    Her 2 positive and Herceptin

    Dear Daniele thank you so much for your informed comments ...my clean living husband age 59 was diagnosed in June stage 4 with mets to liver and lungs was a total shock ..but we have something as he is her 2 positive and therefore received his 2nd  dose of herceptin on the 19th of sept..I have read your posts on various other boards so I know about Claude hope he is doing ok and thank you for giving me some glimmer of hope all the best from London x 

  • dfd24
    dfd24 Member Posts: 91
    #4
    Di said:

    Her 2 positive and Herceptin

    Dear Daniele thank you so much for your informed comments ...my clean living husband age 59 was diagnosed in June stage 4 with mets to liver and lungs was a total shock ..but we have something as he is her 2 positive and therefore received his 2nd  dose of herceptin on the 19th of sept..I have read your posts on various other boards so I know about Claude hope he is doing ok and thank you for giving me some glimmer of hope all the best from London x 

    It is really good news that

    It is really good news that your husband is her2 positive and is getting herceptin. 

    claude is still getting chemo along with the herceptin ( we're in France ) but two other people i've had exchanges with are now getting herceptin only and have no evidence of disease on scans. They too were only given months to live and are around years later. In Claude's case they never gave an estimate as they don't really know. the only thing his oncologist says is that his cancer is slow.

    My husband will have a pet scan end of October and that will evaluate how effective treatment has been. Up to now his oncologist has not wanted to try herceptin alone . 

    there are very few people who have her2 positive EC and treatment with herceptin for EC is only recent (2011) so there is little data so far on outcomes and they don't even know  the best protocol to treat metastatic EC.

    all the best to you both,

    danièle

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #5
    Glad to Hear

    Hello,

     

    I'm glad to hear your husband is doing well so far, he sounds quite strong willed.  I don't know his exact chemo regimen, but of the four different ones I've had, the one for a metastatic recurrence (lung) was by far the harshest.  I had 12 rounds of folfox (biweekly) and weekly herceptin (I am HER2+ also).  That's roughly a six month courese of treatment.  I was initially given about 7-8 months of life expectancy, so it appeared to all of the folks close to me that I was winding down exactly according to schedule as the cumulative effects of the chemo became more pronounced.  By the end of that course I was literally crawling to the bathroom as fast as I could crawl hoping I'd get there quickly enough.  It turned out that I wasn't circling the drain, but that the chemo was working wonderfully, albeit with pretty rough side effects.  I'm relating my tale just to let you know that it can be near impossible to tell the difference between decomposition due to cancer or chemo.  It's ugly either way, but one can be recovered from.  I'm coming in on 3 years since my 7-8 month prognosis and I'm continuing to test completely clean.  While that's not likely a permanent status, I'll take clean tests for as long as they come.  Hopefully, your husband has as good a response to chemo combined with herceptin as I did and you guys get a long time together.  He's already beaten his prognosis, at this point it's a matter of by how much.

     

    Best wishes,

     

    Ed

  • labflower
    labflower Member Posts: 3
    #6
    prayers for your family --

    prayers for your family -- this struggle is so hard.

  • John Char
    John Char Member Posts: 30
    #7
    dfd24 said:

    her2 positive and herceptin

    Hello,

    has your husband been tested for Her2? it is important because if he is positive he can get herceptin.

    other people will tell you that they survived way beyond what the doctors announced. every person is different and they can't really predict.

    also there are new treatments available if the chemo stops working or different combinations of chemo to try sometimes.

     

    wish you all the best ,

    danièle

    Feeling hopeless

    I asked the doctor my husband is not her2 positive. he is now on so much medication he doesn't feel like his self. He is still Driving and helping anybody that he can. He is starting to get upset easy anymore. What can i do to help? He wants to take our camper and go south for january. I am not sure he will be able to. His driving isn't as good as it once was.

  • John Char
    John Char Member Posts: 30
    #8
    dfd24 said:

    her2 positive and herceptin

    Hello,

    has your husband been tested for Her2? it is important because if he is positive he can get herceptin.

    other people will tell you that they survived way beyond what the doctors announced. every person is different and they can't really predict.

    also there are new treatments available if the chemo stops working or different combinations of chemo to try sometimes.

     

    wish you all the best ,

    danièle

    Feeling hopeless

    I asked the doctor my husband is not her2 positive. he is now on so much medication he doesn't feel like his self. He is still Driving and helping anybody that he can. He is starting to get upset easy anymore. What can i do to help? He wants to take our camper and go south for january. I am not sure he will be able to. His driving isn't as good as it once was.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #9
    John Char said:

    Feeling hopeless

    I asked the doctor my husband is not her2 positive. he is now on so much medication he doesn't feel like his self. He is still Driving and helping anybody that he can. He is starting to get upset easy anymore. What can i do to help? He wants to take our camper and go south for january. I am not sure he will be able to. His driving isn't as good as it once was.

    Husband

    My husband was first diagnosed with laryngeal cancer.  Then after treatment, a second primary was found at the cervical of his esophagus which is rare and survival with or without treatment is about the same.  More treatment, no surgery this time.  Clear for about 6 months when it reoccurred at the cervical of his esophagus and spread to his lung, he declined all further treatment.  We are almost 2 years out from this and he is loosing ground.  What I want to say, is that your husband should not be driving.  Mine stopped about 6 months due to pain medication and other medication he is on.  I know how hard it is to drive and pull a trailer.  We used to camp with our fifth wheel all the time and loved it.  But once my husband went thru his first treatment, radiation, chemo and then surgery, he felt he just wasn't strong enough to take the fifth wheel out so we sold the camper.  We both miss camping a lot.  My husband has been on in-home hospice for the last 14 months.  One of our grandsons is getting married this week-end in TN (a 5 hour drive for us) and as much as we would love to go, my husband just isn't up to the trip. 

    And yes my husband gets upset very easy.  Our nurse asked him if he was afraid and he said yes and she says this is not unusal at all.  Hospice was working to set up another hospice where we would be going which is great but I'm just scared for him being around so many people, germs plus the wedding is outside around a lake and the weather will be rainy and cold. 

    This cancer is a beast and it is horrible for all those that have it plus all the caregivers. 

    Wishing you and your husband the best --

  • John Char
    John Char Member Posts: 30
    #10
    Ladylacy said:

    Husband

    My husband was first diagnosed with laryngeal cancer.  Then after treatment, a second primary was found at the cervical of his esophagus which is rare and survival with or without treatment is about the same.  More treatment, no surgery this time.  Clear for about 6 months when it reoccurred at the cervical of his esophagus and spread to his lung, he declined all further treatment.  We are almost 2 years out from this and he is loosing ground.  What I want to say, is that your husband should not be driving.  Mine stopped about 6 months due to pain medication and other medication he is on.  I know how hard it is to drive and pull a trailer.  We used to camp with our fifth wheel all the time and loved it.  But once my husband went thru his first treatment, radiation, chemo and then surgery, he felt he just wasn't strong enough to take the fifth wheel out so we sold the camper.  We both miss camping a lot.  My husband has been on in-home hospice for the last 14 months.  One of our grandsons is getting married this week-end in TN (a 5 hour drive for us) and as much as we would love to go, my husband just isn't up to the trip. 

    And yes my husband gets upset very easy.  Our nurse asked him if he was afraid and he said yes and she says this is not unusal at all.  Hospice was working to set up another hospice where we would be going which is great but I'm just scared for him being around so many people, germs plus the wedding is outside around a lake and the weather will be rainy and cold. 

    This cancer is a beast and it is horrible for all those that have it plus all the caregivers. 

    Wishing you and your husband the best --

    We are at the Cleveland

    We are at the Cleveland Clinic tonight. This is the first time he has been admited to the hospital. he couldnt swallow anything not even water. They are going to scope him tomorrow or Monday. If the esolphegus is closing they are going to put a stent in. Did anybody ever have this done or know anybody that did.

  • John Char
    John Char Member Posts: 30
    #11
    Going south To be

    In May of 2014 the doctor gave my husband 2 to 4 months to live. We are getting ready in 2 weeks to hook onto our camper and just go where the road takes us. The lord willing of course. Anybody that has cancer just take one day at a time and don't let anybody tell you how long you have to live. Only God knows. We go for chemo every 2 weeks for 3 days the rest of Johns life. The doctor at the Cleveland Clinic is going to give us a 3 week break so we can do this trip. This is what John wants to do go where it is warm. We will leave on February 11 after Chemo. Everyone wish us  luck because you all know we need it. 

  • JKGulliver
    JKGulliver Member Posts: 93
    #12
    Right For You

    You and your husband are doing what is right for you.  That is what counts.  I wish you safe and wonderful travels.  We are here wherever there is internet!!!  

  • John Char
    John Char Member Posts: 30
    #13
    JKGulliver said:

    Right For You

    You and your husband are doing what is right for you.  That is what counts.  I wish you safe and wonderful travels.  We are here wherever there is internet!!!  

    Didn't get to go on trip

    we didn't get to go on our trip. The Cleveland Clinic gave us 3 weeks off chemo so we could go. Our camper was packed and ready. On our way home from the clinic our strap broke that held the gas tank on the truck. Got that fixed and our new trailer the lights wouldn't work. We desided it wasn't ment to go. It's a good thing we didn't go because my husband was so sick for over a week. It is to late for us to travel now. John has got to bad. He said he wants to go this summer to a state park close to our house. We will have to wait and see. He says he is not ready to die. This is so sad.

  • John Char
    John Char Member Posts: 30
    #14
    Can't explain how he feels

    After 10 months on cheme every other week john can't explain how he feels. All he says is he feels bla. He knows when he is nauseated but when he is ha sing a bad day he can't tell me what is wrong. Can anybody help explane what he is feeling?

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #15
    John Char said:

    Can't explain how he feels

    After 10 months on cheme every other week john can't explain how he feels. All he says is he feels bla. He knows when he is nauseated but when he is ha sing a bad day he can't tell me what is wrong. Can anybody help explane what he is feeling?

    I've felt blah too.

    Sorry to hear you guys missed out on the road trip. Hopefully, you get to enjoy a trip to the state park.

     

    At the end of my roughest chemo regimen (I'm also stage IV and her2+) everything, and I mean everything, was a strain. I had to struggle to find the energy to even care about eating, drinking or staying awake.  It wasn't taxing to talk, it was an overwhelming burden just to listen.  I'd sit for over an hour just trying to get up the energy to get up.  I think that might be some of the blah your husband is describing.  For me, the feeling that everything was too much work to be worth it was more than a little depressing.  I also struggled a lot with not wanting to admit to anyone just how weakened I was.  I was a man, dammit, and I could do for myself.  Unfortunately, this disease can take us to some unpleasant places.

     

    Wishing you the best,

     

    Ed

     

     

     

  • John Char
    John Char Member Posts: 30
    #16
    Deathorglory said:

    I've felt blah too.

    Sorry to hear you guys missed out on the road trip. Hopefully, you get to enjoy a trip to the state park.

     

    At the end of my roughest chemo regimen (I'm also stage IV and her2+) everything, and I mean everything, was a strain. I had to struggle to find the energy to even care about eating, drinking or staying awake.  It wasn't taxing to talk, it was an overwhelming burden just to listen.  I'd sit for over an hour just trying to get up the energy to get up.  I think that might be some of the blah your husband is describing.  For me, the feeling that everything was too much work to be worth it was more than a little depressing.  I also struggled a lot with not wanting to admit to anyone just how weakened I was.  I was a man, dammit, and I could do for myself.  Unfortunately, this disease can take us to some unpleasant places.

     

    Wishing you the best,

     

    Ed

     

     

     

    Thank you for replying Deathorglory

    Thank you for Answering that is what he has been telling me but couldn't put it in words.  This has been a sad lonely road. All of our friends that we thought would support us stays away like we have something they will catch. My husband was ALWAYS doing for others. Now he has nothing to offer our friends has disappeared. So sad for my husband. 

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