Question specifically for those with pre-op and post-op chemo

dlrepic
dlrepic Member Posts: 62
edited March 2014 in Esophageal Cancer #1
HI,
My father has stage 2b, had pre-op chemoradiation and then the MIE on Dec 3rd. The pathology revealed 1 lymphnode of 11 removed with residual active tumor. William has given me great advice and today the oncologist recommended(at my insistence) that my dad have a 9 week course of post-op chemo, but dad isn't sure he wants to go through chemo again. He asked if I could get some insight from anyone on this site.

Thanks
Danielle

Comments

  • cindyhils
    cindyhils Member Posts: 27
    #2
    chemo
    I was staged 2a, had pre-op chemoradiation and then the THE surgery. my pathology revealed no cancer out of 11 lymph nodes. I was told and agreed that if any lymph node showed cancer i would have more chemo. it is the only way to be sure. you need to have him do this if he is able. It will be tough but i think it will all be worth it. Good luck, cindy
  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    I was 2B and had post op chemo
    Danielle,

    I was diagnosed 2B. I had Ivor Lewis surgery last December. The pathology study revealed that of the 19 lymph nodes removed that one of them showed active cancer cells. I had a course of 18 weeks of Cisplatin, Epirubicin, and 5 FU.

    It was not a pleasant experience, but thank God, my scans since then have shown no evidence of recurrent cancer. I am glad that I did all that I could do to insure the cancer was eradicated. I would recommend that your Dad do the same.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • dlrepic
    dlrepic Member Posts: 62
    #4
    Thanks
    I just spoke with my dad and read him your posts. He wasn't wanting to do it, but now he's leaning towards doing the 9 weeks. His hair didn't fall out with the first round, but he was told it will this time. I think that and the mouth sores are what was deterring him. When my husband went through chemo 6 years ago, the mouth sores were terrible, dad had them with his first round, as well. Does anyone have a solution or somehow to treat them?

    Danielle
  • dlrepic
    dlrepic Member Posts: 62
    #5
    cindyhils said:

    chemo
    I was staged 2a, had pre-op chemoradiation and then the THE surgery. my pathology revealed no cancer out of 11 lymph nodes. I was told and agreed that if any lymph node showed cancer i would have more chemo. it is the only way to be sure. you need to have him do this if he is able. It will be tough but i think it will all be worth it. Good luck, cindy

    question
    How long since DX and treatment?
    Danielle
  • Unknown
    Unknown
    #6
    dlrepic said:

    Thanks
    I just spoke with my dad and read him your posts. He wasn't wanting to do it, but now he's leaning towards doing the 9 weeks. His hair didn't fall out with the first round, but he was told it will this time. I think that and the mouth sores are what was deterring him. When my husband went through chemo 6 years ago, the mouth sores were terrible, dad had them with his first round, as well. Does anyone have a solution or somehow to treat them?

    Danielle

    This comment has been removed by the Moderator
  • dlrepic
    dlrepic Member Posts: 62
    #7
    unknown said:

    This comment has been removed by the Moderator

    Thanks, I will let dad know
    Thanks, I will let dad know about that solution.
    Take care
    Danielle
  • Donna70
    Donna70 Member Posts: 852 Member
    #8
    unknown said:

    This comment has been removed by the Moderator

    post op chemo works
    Hi,
    I was T3N1MO and had chemo, radiation and Ivor Lewis surgery and was found to have 1 out of 19 nodes positive. So I had 3 cycles of taxotere and now since March I have had all clear scans. My dr simply said I don't want to see you in a year with a recurrence. It was my insurance policy but have to acknowledge there is no 100% guarantee that it won't recur but it sure helps to do as much as you can to prevent it. I have mentioned this many times on this board. I had terrible mouth sores from the preop chemo and after I was given Acyclovir liquid med never had them again. It kept them away and also helped when I had post op chemo. For me, the Magic mouthwash did not seem to help, this med helped big time. Good luck to your father and hope he agrees to some post op chemo. take care,
    Donna70
  • dlrepic
    dlrepic Member Posts: 62
    #9
    Donna70 said:

    post op chemo works
    Hi,
    I was T3N1MO and had chemo, radiation and Ivor Lewis surgery and was found to have 1 out of 19 nodes positive. So I had 3 cycles of taxotere and now since March I have had all clear scans. My dr simply said I don't want to see you in a year with a recurrence. It was my insurance policy but have to acknowledge there is no 100% guarantee that it won't recur but it sure helps to do as much as you can to prevent it. I have mentioned this many times on this board. I had terrible mouth sores from the preop chemo and after I was given Acyclovir liquid med never had them again. It kept them away and also helped when I had post op chemo. For me, the Magic mouthwash did not seem to help, this med helped big time. Good luck to your father and hope he agrees to some post op chemo. take care,
    Donna70

    Thanks
    I will read him your post and ask about the medicine. I appreciate your advice.
    Danielle
  • K_ann1015
    K_ann1015 Member Posts: 500
    #10
    dlrepic said:

    Thanks
    I just spoke with my dad and read him your posts. He wasn't wanting to do it, but now he's leaning towards doing the 9 weeks. His hair didn't fall out with the first round, but he was told it will this time. I think that and the mouth sores are what was deterring him. When my husband went through chemo 6 years ago, the mouth sores were terrible, dad had them with his first round, as well. Does anyone have a solution or somehow to treat them?

    Danielle

    sorry so late..
    Hi Danielle

    my dad had his surgery 12/09 at Duke and had pre & post op chemo. We were very worried about post op chemo--but what I notices is that Duke doesn't always do things the same way other hospitals do things---his nodes were negative and there was actually a disagreement whether he should do post op chemo. The Surgeon felt that some areas that
    lit up in pet scan post op were do to the surgery or inflammation and the oncologist disagreed. Obviously we felt the oncologist should be the deciding factor---but they made him wait a short time until he was able to build his strength up---we know he couldn't have tolerated it otherwize. But even though it was a challenge--it was nothing compared to the initial chemo (a clinical trial with a chemo rad combo).

    Bottom line---with the voracity of this cancer---if there is any way your dad can tolerate it--and the doctors recommend it (you can always stop), I know we would do it again....
    God Bless
    Kim
  • sandy1943
    sandy1943 Member Posts: 824
    #11
    Hi, I was diagnosed with
    Hi, I was diagnosed with T3N1mo EC in Nov'07. I had preop chemo and the ivor Lewis surgery. Afterward I tested positive in one lymph Node, so chemo was given again . Two weeks into the first round ,chemo was stopped because of complications. I felt like I was given a death sentence . When my first scan came back, I was cancer free and have been every since. Yes, as bad as chemo is , I beleive God has given the drs. the knowledge to treat us and I praise Him for the healing juices that poured into my body ( even though we know it's poisen). I would try it again.
    Praying your dad will make the right decision,
    Sandra
  • paul61
    paul61 Member Posts: 1,391 Member
    #12
    dlrepic said:

    Thanks
    I just spoke with my dad and read him your posts. He wasn't wanting to do it, but now he's leaning towards doing the 9 weeks. His hair didn't fall out with the first round, but he was told it will this time. I think that and the mouth sores are what was deterring him. When my husband went through chemo 6 years ago, the mouth sores were terrible, dad had them with his first round, as well. Does anyone have a solution or somehow to treat them?

    Danielle

    Keeping ice in your mouth during chemo infusion helps
    Danielle,

    The first couple of cycles of chemo I had mouth sores. My oncologist recommended sucking on crushed ice while I was getting my chemo infusion. One of the medications I received (Epirubicin) had a tendency to concentrate in mucous membranes and cause the mouth sores. The cold from the ice reduced that concentration. After I started doing that I did not have mouth sources for the following four cycles.

    I have talked to other chemo patients who have had success with that approach as well. I also used a toothpaste and mouthwash called Biotene that is made specifically for people who have problems with dry mouth. That allowed me to brush my teeth as normal and reduced the general discomfort in my mouth.

    Paul Adams
    McCormick, South Carolina
  • Unknown
    Unknown
    #13
    This comment has been removed by the Moderator
  • dlrepic
    dlrepic Member Posts: 62
    #14
    unknown said:

    This comment has been removed by the Moderator

    thanks
    Good morning,

    As always, thank you for your advice and humor

    If you recall, last month when dad had his surgery and the pathology came back, both the surgeon and the oncologist were adamant that he DID NOT need additional chemo. I told them what I had read and they said, “Those are just patients” and that made me very angry. Who know better than those that have went through this? Well, I took your advice and contacted Dr. Luketich and he referred me to the oncologist in his clinic…..well, long story short, when I shared their emails with the surgeon, I can only assume that she conferred with the oncologist, because when we went to the appointment yesterday, she came in with a plan. I didn’t even have to grab her by the hair and drag her through the mud, which I was prepared to do. I’m pretty sure dad will take the treatment, he just got scared when she mentioned that it was going to be a hard 9 weeks, but in the big picture, 9 weeks is a very small piece of time.

    P.S. – dad is still trying to eat steak, chicken, pasta, etc – it doesn’t always stay down, but he keeps trying. He does still have the j-tube and they told him it would be in a few more months because he’s dehydrated. He’ll eat but won’t drink, go figure. I have convinced him that if nothing else, squirt the Gatorade into the tube.

    I wish everyone well
    Danielle
  • Unknown
    Unknown
    #15
    dlrepic said:

    thanks
    Good morning,

    As always, thank you for your advice and humor

    If you recall, last month when dad had his surgery and the pathology came back, both the surgeon and the oncologist were adamant that he DID NOT need additional chemo. I told them what I had read and they said, “Those are just patients” and that made me very angry. Who know better than those that have went through this? Well, I took your advice and contacted Dr. Luketich and he referred me to the oncologist in his clinic…..well, long story short, when I shared their emails with the surgeon, I can only assume that she conferred with the oncologist, because when we went to the appointment yesterday, she came in with a plan. I didn’t even have to grab her by the hair and drag her through the mud, which I was prepared to do. I’m pretty sure dad will take the treatment, he just got scared when she mentioned that it was going to be a hard 9 weeks, but in the big picture, 9 weeks is a very small piece of time.

    P.S. – dad is still trying to eat steak, chicken, pasta, etc – it doesn’t always stay down, but he keeps trying. He does still have the j-tube and they told him it would be in a few more months because he’s dehydrated. He’ll eat but won’t drink, go figure. I have convinced him that if nothing else, squirt the Gatorade into the tube.

    I wish everyone well
    Danielle

    This comment has been removed by the Moderator
  • dlrepic
    dlrepic Member Posts: 62
    #16
    unknown said:

    This comment has been removed by the Moderator

    answers
    As for the stretching, we did talk to Dr. Dunst, but right now we believe it's just the bulk that he's eating. I do believe he's finally getting the picture.

    I will ask if he would talk to you. He's always asking if I've heard anything new.

    I will ask about the hydration you mentioned (Lactated Ringers).

    Thanks again
    Danielle
  • Donna70
    Donna70 Member Posts: 852 Member
    #17
    dlrepic said:

    answers
    As for the stretching, we did talk to Dr. Dunst, but right now we believe it's just the bulk that he's eating. I do believe he's finally getting the picture.

    I will ask if he would talk to you. He's always asking if I've heard anything new.

    I will ask about the hydration you mentioned (Lactated Ringers).

    Thanks again
    Danielle

    use j tube for hydration
    Hi Danielle.
    A simple solution for hydration is flush the j tube with water more frequently I did that esp when I knew I was showing signs of dehydration. Also my cancer center would do infusions if you needed them. take care and glad he is getting the post op chemo. take care,
    Donna70
  • Pat Davis
    Pat Davis Member Posts: 8
    #18
    hope for recovery
    Hi, My husband is newly diagnosed with Stage IV and we have been told there is no hope for his recovery because it has metasticized to the liver. He has no symptoms and will be starting chemo in a week, not to cure him, just lengthen his life. I only wish that he had the hope that your Dad has, and to refuse it would not even be an option. It is the gift of life that you have been given, and when others are being told there is no chance of a cure other than a miracle, I would urge your Dad try to do it. I am not making a comparison between patients; I know each person must decide for himself. If it maximizes his chances of a cure, that is wonderful. I just wish we had that hope.
  • Donna70
    Donna70 Member Posts: 852 Member
    #19
    Pat Davis said:

    hope for recovery
    Hi, My husband is newly diagnosed with Stage IV and we have been told there is no hope for his recovery because it has metasticized to the liver. He has no symptoms and will be starting chemo in a week, not to cure him, just lengthen his life. I only wish that he had the hope that your Dad has, and to refuse it would not even be an option. It is the gift of life that you have been given, and when others are being told there is no chance of a cure other than a miracle, I would urge your Dad try to do it. I am not making a comparison between patients; I know each person must decide for himself. If it maximizes his chances of a cure, that is wonderful. I just wish we had that hope.

    Pat, do a separate post and tell us your story
    Hi Pat,
    Have you done a separate post telling us about your husband's situation? There are Stage IV patients on this board and they can be very helpful to you about what can be done to extend life. They have been thru various treatment regimens and can give hope for a longer survival than sometimes people are told. It sounds good that the drs are proceeding with chemo but I am sure Bailey (Sherrie) could give you a lot of sound advice from her experience that her husband Jim and she have gone thru and are still here. take care,
    Donna70

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