Stage IV hope...

mmr19
mmr19 Member Posts: 75
in Esophageal Cancer #1
First, please know that though the cancer may be the same, all patients are different. Treatment plans are different. Results are different. What works for one doesn't necessarily work for another.
But we are all in this together. The fear. The hope. We all have it.

I want to share some hope with Stage IV patients.
My husband, Lou, was diagnosed Stage IVB in Dec. 2009. He has been receiving chemo since then.

He has good days and bad days. In the beginning, it was really rough. He had a lot of complications, reactions and things that just added to the stress of it all. Many times I was scared that 'This was it'.
But we got through it. And learned ALOT along the way.

I haven't been on this site in a while, though it was a lifesaver for me in the beginning. I learned so much from other people's experience. It helped tremendously. I guess I reached a point though that it became depressing to see all the newcomers and loss of others. I was worried that I wasn't doing enough compared to others. Were we doing all we could?

The last year and a half our life has become routine. Lou has been on the same chemo now since late 2010 and it seems to be working. It's holding the cancer at bay. He has it 2 weeks in a row (as long as blood work is OK) and then off for 2 weeks. Recently however, it was changed to 3 weeks off. His body just hasn't been recouping enough in just 2 weeks.

He does feel bad a lot. Has a lot of stomach pain that he blames on the chemo. I have been trying to convince him for months to see his GI Dr, but..........

I guess I just have gotten too used to our routine, and one day I had a reality check. He has EC! I cannot rest too easily with this beast lurking in the corner!
But I want to pass on hope to other stage IV patients. I was so afraid we'd never get this far. But we did. Lou gets CT scans every 3 months and they have shown no progression. We must be doing something right!

Thoughts and prayers to all-
Marta

Comments

  • BMGky
    BMGky Member Posts: 621
    #2
    Hope you have continued
    Hope you have continued success with your husband's treatment. BMGky
  • BMGky
    BMGky Member Posts: 621
    #3
    Double post. Sorry.
    Why can't you delete on editing?
  • goty2001
    goty2001 Member Posts: 71
    #4
    Thanks Marta
    I'm going for first chemo treatment next Wed for stage IV EC. It's heartening to hear that it just may keep things going for more than what I'd been thinking about. I wish you and your husband continued success.
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #5
    goty2001 said:

    Thanks Marta
    I'm going for first chemo treatment next Wed for stage IV EC. It's heartening to hear that it just may keep things going for more than what I'd been thinking about. I wish you and your husband continued success.

    I wish you and your husband
    I wish you and your husband continued success! I'm sure it is hard to see all of us newcomers, but you pioneers really have forged the path for us, and we are grateful!
  • ABC321
    ABC321 Member Posts: 52
    #6
    which chemo
    Hi Marta,
    Just wondering what chemo regime your husband is on?
    rgds
    Stephen
  • Callaloo
    Callaloo Member Posts: 135
    #7
    You are fortunate
    What chemo regimens has he been on. Bless you both. I wish you continued success.

    Lu
  • Unknown
    Unknown
    #8
    Callaloo said:

    You are fortunate
    What chemo regimens has he been on. Bless you both. I wish you continued success.

    Lu

    This comment has been removed by the Moderator
  • mmr19
    mmr19 Member Posts: 75
    #9
    Thanks for the good wishes
    Lou had Cisplatin and Fluorouracil for the first 5 days when he started radiation. Had 15 rounds. A week after radiation ended Lou got his first treatment of Taxotere and Carboplatin. He had it every three weeks for 6 cycles. There were occasional delays along the way due to different issues, but the mass in the esophagus shrunk, and the nodule on his lung and adrenal gland are gone. After the 6 cycles were finally completed in Sept. 2010, Lou was put on a new regimen of Cisplatin (Platinol) and Irenotecan (Camptosar). Original plan was a 4 week on (once a week) and 2 weeks off cycle, however, Lou's body didn't agree. He was never able to tolerate the chemo more than 2 weeks in a row. So the Dr finally agreed to change the plan to 2 weeks on and 2 weeks off.

    Now though, since Jan 2012, Lou is not recouping as quickly. He needs 3 weeks off to be able to take chemo again. His body is dictating the schedule. The Dr agreed and 'officially' changed his schedule to 3 weeks off. We were told that the cumulative effects of the chemo makes it harder to recoup.

    Lou is very fatigued most of the time and has ongoing abdominal pain. Scans show no explanation for pain.

    There are many times that he says he's so sick and tired of feeling so sick and tired all the time. But the cancer is being held at bay.....and for that he is grateful. So........?
    Sorry this is long and I probably repeated myself.

    Good wishes to all-

    Marta

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