update from lulu1010

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lulu1010
lulu1010 Member Posts: 367
in Ovarian Cancer #1
Thought I would check in with what has been going on. I have been off chemo since May and getting a trial vaccine. Six weeks after my last CT scan that was negative I started to have abdominal pain and constipation. Abdominal series at that time was negative. The doctor felt it was a GI issue since the CT scan was negative and my CA125 was in the teens. I have continued to have abdominal pain and constipation for another 6 weeks. On Thursday this week I am due for my 3 mos. CT scan and bloodwork. I am hoping for some kind of answer. I also have an appt with a GI doctor next week.
While this is going on I had a double mastectomy ( I am BRCA 2 Positive) which went very well. I went into the procedure a little unsure but now I am glad I did it. My abdominal pain has been more of a problem than the mastectomy.
If the CT is ok I will get another dose of the vaccine and will stay in the trial and then see the GI doctor. Big day on Thursday!
And to top it off I am scheduled to go back to work next week. I hope the stars are all lined up in the right way. As you all know, waiting and not knowing what is going to happen is sooo hard. I will keep busy till Thursday...

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  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #2
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    Hi Lu
    good to hear from you. I hope you are feeling well these days. Your pain may be old scar tissue. How much longer on the vaccine trial? Take it slow and pace yourself when you return to work...val
  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #3
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    Thanks for the update
    I will be hoping and praying that your upcoming CT scan explains what's going on and that it's non-cancer related and easy to treat. I know that the waiting is torture but you're a very strong person who bravely and understandably chose a double mastectomy plus you're fighting back against this beast that we're all dealing with. Please keep us posted.

    Hugs,
    Kelly
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #4
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    The waiting is horrible !
    You are so strong and have been thru so much you really deserve a break ! Constipation is the worst, I never thought my bowel habits would affect my life so much. It is very likely your constipation the only cause of your pain. I am crossing my fingers for you.
    what vaccine are you getting? Good Luck let us know how your tests come out.
    Colleen
  • lulu1010
    lulu1010 Member Posts: 367
    #5
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    poopergirl14052 said:

    Hi Lu
    good to hear from you. I hope you are feeling well these days. Your pain may be old scar tissue. How much longer on the vaccine trial? Take it slow and pace yourself when you return to work...val

    Val
    I get my 7th set of injections this week and then I only have 3 more but the last two are every 8 weeks so I will be done with all of those by August and then one year of monitoring.
    I lost my part-time job when I was sick but they have been very nice and let me work PRN which gives me flexability and a little money. I am scheduled for 2-3 days a week for March and they are every other day so it should be fine. I really dont think I could work more that 2-3 days a week on a long time basis anyway. Last summer we were slow and I hardly worked at all which was hard on the wallet. We will see what happens this year.
    I will be really glad to find out about the pain. The Dr says scar tissue or inflammatory bowel disease. That is what they thought when I was diagnosed with the cancer. Maybe they just found the cancer by accident! Who knows. Anyway it got better but now if it is not cancer then we must find another reason so I have an appt with a new GI guy next week. I so hope it is the GI issue...never thought I would think that but it is sure better than the beast.
    Take care and pace yourself as well. I hope you have a lovely spring.
    Hugs! Linda
  • lulu1010
    lulu1010 Member Posts: 367
    #6
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    Cafewoman53 said:

    The waiting is horrible !
    You are so strong and have been thru so much you really deserve a break ! Constipation is the worst, I never thought my bowel habits would affect my life so much. It is very likely your constipation the only cause of your pain. I am crossing my fingers for you.
    what vaccine are you getting? Good Luck let us know how your tests come out.
    Colleen

    Colleen
    I am getting the CVAC vaccine at Cleveland Clinic but it is given several places in the US and Austrailia. You can look it up online. I know that they are about to start another round of trial soon...I think it will be phase 3.
    Thanks for your good wishes!

    Linda

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