Is there no hope for remission for me?

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Christine B.
Christine B. Member Posts: 137
edited March 2014 in Ovarian Cancer #1
I was diagnosed with stage IV Sept. 10th. The gyn/onc was not able to complete the surgery as planned to debulk and a complete hysterectomy because there was so much cancer in my abdomen. I had the omentum removed, a colostomy, and as much cancer as possible removed before my blood pressure dropped and I was losing a lot of blood. My understanding from the gyn/onc was that I would have chemo to shrink the cancer and then a second surgery to finish the debulking and hysterectomy. I have had 4 chemo treatments and the CA125 has dropped steadily: 2400 before surgery, 1200 after surgery, 500 first chemo, 191 second, below 100 third chemo, and I had the blood draw today for the fourth chemo, so don't have those results. Today the chemo/onc (different doctor)said that it was below 100 after the third chemo. He said it was dropping "nicely". Today he explained that the next step after my fifth and sixth chemo will not necessarily be surgery as I understood from the gyn/onc. He said they may just decide to watch. When I questioned him about what this meant, he was vague about what would be done if we watch and my numbers go up. I know that stage IV is incurable, and it must be treated as a chronic disease. But does this "watching" mean no hope for remission? I will see the gyn/onc after my last chemo (6th) to discuss the results and next steps. Like I said before, he has always talked about a second surgery. The chemo/onc. always leaves me feeling badly about my prognosis 1-5 years. If the final decision is "watch" and not a second surgery, I feel like my death is just being prolonged, I'll never have a chance for remission with stage IV. Does chronic mean no remission? I HATE this feeling!!!!!
Christine

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  • Mwee
    Mwee Member Posts: 1,338
    #2
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    great chemo results
    Hi Christine,

    I wish I had an answer for you as to whether or not you'll be able to have some remission, but I don't. I do think that your results are simply wonderful. I've been going through chemo for my (1st?) recurrance for the last year. I also have no idea whether I'll ever get back to remission. I found out today that my CA-125s dropped to 60 which is the lowest I've seen them in over a year and I'm thrilled with that. My ONC says very much the same as yours... chonic/no surgery/watch. He does say that if my numbers go back into the "normal" range that he'll continue with maintainance chemo. I'll take that. No progression is a very good thing.
    (((HUGS))) Maria
  • Disneynutt
    Disneynutt Member Posts: 134 Member
    #3
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    Hi Christine,
    I would not
    Hi Christine,

    I would not give up hope at all! Your numbers are dropping very nicely and I think that is a good sign. You may be able to obtain remission thru chemo alone. The doctors like to "watch" because they are trying to balance the effectiveness of giving you a poison with what it does to your body they don't like to do surgery if avoidable. I know I will never be in remission because I have platinum resistant disease; it does not respond to most drugs. I'm now on a break because the last chemo was so hard on me. My CA125 is going up but I have a CT scan tomorrow to see what's up. It's tough to find a chemical that works on me. Now that's scary!!! :-) But I would take heart and don't panic. Besides, it may be too early to decide what to do next. They will probably wait til all your chemo is finished and then make a decision.

    I don't know if chronic means no remission but I don't think it does. I think a lot of cancers are now chronic which means they come and go over time. It's a long term designation.

    But my medical degree has expired so this is all from experience and reading.

    Best of luck,
    Kate
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    Most doctors recommend more
    Most doctors recommend more chemo, rather than more surgery, if efforts to achieve remission are not successful. I will finish 12 months of maintenance Taxol this month and my doctor wants to "wait and watch", with regular lab draws, of course. The thought of just doing nothing makes me crazy.

    Carlene
  • kayandok
    kayandok Member Posts: 1,202 Member
    #5
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    Hi Christine,
    there is ALWAYS hope for remission! There are long term survivors that were dx stage IV ovca walking around.

    I think I would push for the surgery, if your body can tolerate it. Just my opinion, though.

    Hugs,
    kathleen
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #6
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    kayandok said:

    Hi Christine,
    there is ALWAYS hope for remission! There are long term survivors that were dx stage IV ovca walking around.

    I think I would push for the surgery, if your body can tolerate it. Just my opinion, though.

    Hugs,
    kathleen

    Stage 4
    I'm stage 4 PPC and I don't think I will ever be able to have a long remission. I went 7 months last year before my numbers shot right up. I have not been able to have any surgery because my cells are so small and scattered so widely. All I can hope for is to have the chemo, get a few months remission and then gor back on chemo again. I think this "chronic" cancer is a thing I will have to live with and keep hoping my body stays strong enough to keep taking the "hits" from the poison chemo.

    Just a new way of living. Its hard to think it WILL NEVER GET BETTER, but we have no choice and we have to go with what we've got.

    Tina x

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