Lindsay Brown, here is another stage iv story

JaneE2366
JaneE2366 Member Posts: 289 Member
edited March 2014 in Esophageal Cancer #1
Lindsay,
First I want to tell you how sorry I am that you had to seek out this site. It is not a club you want to belong to.
I know things look the darkest to you now. My husband Charlie was dx in Mar 2009 with stage iv EC. (Mets to lung, liver, lymph nodes and peritoneal cavity.) Radiation and surgery are not options. Chemo is his only option. He had 4 rounds....finished up in Aug. I thought we would never have any kind of normalcy in our house again. The chemo made him so ill.....lost around 50 lbs......he was so down.
Well the chemo did it's job. It got him into remission. That is the best we can hope for since he cannot be cured. He had a PET scan after 2 rounds of chemo and he was in remission. Had another Pet after the 4th round and he is still in remission. That was in Sept. He is on oral chemo now and has a treatment of Herceptin every 3 weeks. We are praying the oral chemo and Herceptin keeps him in remission. We will have another PET this month and, God willing, it will show no change. But things have changed dramatically
since Aug. He is stronger......we try to walk or ride our bicycles everyday. He even played Santa last night. He was able to help decorate a friends boat on Friday and Charlie dressed up as Santa and was in the boat parade. He is dressing up again today to play Santa for the kids in our community. Earlier this week he was up on a ladder putting up our outside Christmas lights and helped me with our tree. I would have bet you money he would have never been able to do any of this if you had asked me last summer. My point being.....with the help of God (and good doctors) you dad can turn around. He has to fight......that was my mantra when Charlie was first diagnosed. I would tell him over and over again.....
I wish you and your family the best.....and it goes without saying....every new "member" automatically goes on everyone's prayer list....and never under estimate the power of prayer.
Stay strong,
Jane

Comments

  • LindsayBrown
    LindsayBrown Member Posts: 22
    #2
    Thanks you for sharing this
    Thanks you for sharing this with me Jane. At this point they said my father will be having radiation and chemo and they say that he is curable and most likely will have surgery after chemo and radiation. This is all so new to me that I don't really understand why in stage IV some people are operable and some are not. We don't have any idea what to expect and we are all so scared. Your story has made me feel stronger and I thank you. Your husband will be in my prayers
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #3
    LindsayBrown said:

    Thanks you for sharing this
    Thanks you for sharing this with me Jane. At this point they said my father will be having radiation and chemo and they say that he is curable and most likely will have surgery after chemo and radiation. This is all so new to me that I don't really understand why in stage IV some people are operable and some are not. We don't have any idea what to expect and we are all so scared. Your story has made me feel stronger and I thank you. Your husband will be in my prayers

    Dear Lindsey,Hello and
    Dear Lindsey,
    Hello and welcome. I am quite new to this site as well, and I have found it to be so helpful!
    My dad was diagnosed with stage iv EC November 2008. He was not a candidate for surgery for a few reasons. First of all he had had 5 bypass surgery in 1994, and the surgeon thought it was too risky for his heart. After oral chemo and 6 wks of radiation treatments, he was so beat up and worn out both mentally and physically, the surgeon felt he would not survive the surgery. So we took the chemo and radiation route. He had a pet scan done, which showed a considerable amount of shrinkage of the tumor. We were happy with that!

    This was January 2009. Throughout the winter dad experienced being extrememly tired, and still having some difficulty swallowing. By April 2009, the tiredness subsided, the swallowing problem was there, but he was able to deal with it, and he went back to work!

    He worked all summer, now it is fall, now it is winter, and he has appt to go back to the ongologist. We tell him about the ongoing problem with swallowing. He suggests he thinks it is from scar tissue. He advises us to see the gastro dr. and have an endoscope done.

    So....that is what we did. The scope showed a coniderable amount of scar tissue closing off the esophagus. She said it was really tight. She also said that she did not see any sign of cancer in the esophagus. Horray! She then did a balloon dilation to stretch open the esophagus. Since there was so much scar tissue, she wants dad to come back in 2 weeks, 12/21 to have another dilation done. He will also be having another pet scan done that day. That will be a very looong day for us. Praying that all goes well and the pet scan does not show any more spots!!

    Best of luck to you and your dad. Being a caregiver is a very tough job, but it is also very rewarding. Just stay positive, keep your faith, keep fighting!! You and your dad will be in my prayers.

    Tina
  • LindsayBrown
    LindsayBrown Member Posts: 22
    #4
    Tina Blondek said:

    Dear Lindsey,Hello and
    Dear Lindsey,
    Hello and welcome. I am quite new to this site as well, and I have found it to be so helpful!
    My dad was diagnosed with stage iv EC November 2008. He was not a candidate for surgery for a few reasons. First of all he had had 5 bypass surgery in 1994, and the surgeon thought it was too risky for his heart. After oral chemo and 6 wks of radiation treatments, he was so beat up and worn out both mentally and physically, the surgeon felt he would not survive the surgery. So we took the chemo and radiation route. He had a pet scan done, which showed a considerable amount of shrinkage of the tumor. We were happy with that!

    This was January 2009. Throughout the winter dad experienced being extrememly tired, and still having some difficulty swallowing. By April 2009, the tiredness subsided, the swallowing problem was there, but he was able to deal with it, and he went back to work!

    He worked all summer, now it is fall, now it is winter, and he has appt to go back to the ongologist. We tell him about the ongoing problem with swallowing. He suggests he thinks it is from scar tissue. He advises us to see the gastro dr. and have an endoscope done.

    So....that is what we did. The scope showed a coniderable amount of scar tissue closing off the esophagus. She said it was really tight. She also said that she did not see any sign of cancer in the esophagus. Horray! She then did a balloon dilation to stretch open the esophagus. Since there was so much scar tissue, she wants dad to come back in 2 weeks, 12/21 to have another dilation done. He will also be having another pet scan done that day. That will be a very looong day for us. Praying that all goes well and the pet scan does not show any more spots!!

    Best of luck to you and your dad. Being a caregiver is a very tough job, but it is also very rewarding. Just stay positive, keep your faith, keep fighting!! You and your dad will be in my prayers.

    Tina

    Thanks Tina. It's nice to
    Thanks Tina. It's nice to hear from another daughter going through the same thing. I am so close with my dad and it sounds as though you are with yours as well. Anyhow, he will start Cistipan chemo in the hospital on Tuesday and radiation on Wednesday as well as the 5 day fanny pack 5-FU (i think that is what it's called). He is in good health so they are 5 weeks of chemo and radiation and then surgery. I'm sure we will have to see how effective the treatments have been before surgery. Do you know why the cistipan has to be delivered in hospital? Did your dad have that as well? How did he do with the chemo, loss of hair, etc? Lot's of prayers coming your way!

    Lindsay
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    LindsayBrown said:

    Thanks Tina. It's nice to
    Thanks Tina. It's nice to hear from another daughter going through the same thing. I am so close with my dad and it sounds as though you are with yours as well. Anyhow, he will start Cistipan chemo in the hospital on Tuesday and radiation on Wednesday as well as the 5 day fanny pack 5-FU (i think that is what it's called). He is in good health so they are 5 weeks of chemo and radiation and then surgery. I'm sure we will have to see how effective the treatments have been before surgery. Do you know why the cistipan has to be delivered in hospital? Did your dad have that as well? How did he do with the chemo, loss of hair, etc? Lot's of prayers coming your way!

    Lindsay

    Hey Lindsay, Glad to hear
    Hey Lindsay,
    Glad to hear back from you. I do not know the names of what chemo and radiation my dad had. Sorry. As far as it having to be delivered to the hospital? I don't understand that either. My dad did great with both the chemo and radiation. Thank God. The only side effect he had was being extremely tired. For some reason, he did not lose any of his hair. In fact, we think it came back in thicker than before treatment.

    If your dad does experience nausea from the treatments, the drs will give him a med. to help with this. I think my dad had to use it a couple of times. My dad did not have this fanny pack. Yes that is what you call it.

    Before his surgery I am sure they will do another cat or pet scan to see how the treatment effected the tumor. Then they will discuss surgery. Keeping you both in my prayers daily. Keep positive.Yes, my dad and I are very close. I have always been daddy's little girl...even at 45!! He says I am his right hand girl. :)
    Tina
  • Betty in Vegas
    Betty in Vegas Member Posts: 290 Member
    #6
    LindsayBrown said:

    Thanks Tina. It's nice to
    Thanks Tina. It's nice to hear from another daughter going through the same thing. I am so close with my dad and it sounds as though you are with yours as well. Anyhow, he will start Cistipan chemo in the hospital on Tuesday and radiation on Wednesday as well as the 5 day fanny pack 5-FU (i think that is what it's called). He is in good health so they are 5 weeks of chemo and radiation and then surgery. I'm sure we will have to see how effective the treatments have been before surgery. Do you know why the cistipan has to be delivered in hospital? Did your dad have that as well? How did he do with the chemo, loss of hair, etc? Lot's of prayers coming your way!

    Lindsay

    I think where you get your citsplatin
    has to do with your health and your oncologist. Our friends at MD are doing theirs outpatient, (at the hospital in a chemo room, then home after chemo). We did oxalplatin, and it was also done outpatient. If you mean why is it done there and not in a fanny pack, some of the chemos need to have flushes before and after, dosed in a particularly quick way, or need steriods given when administered.

    Layne didn't lose hair...of course not, he's nearly bald on top and wouldn't have minded...then he would have had an EXCUSE to be bald. No, it's the 17 year old female with hair to her ankles that loses hers it seems. Sigh. The one side effect Layne wouldn't have minded getting he never got!

    Betty

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