I've had a recurrance and will need you ladies as they try Ovarian Cancer chemos on me.

lindaprocopio
lindaprocopio Member Posts: 1,980 Member
edited March 2014 in Ovarian Cancer #1
My oncologist told me from the beginning that Uterine Papillary Serous Carcinoma (UPSC) is every bit as aggressive and recurrant as Ovarian Cancer. But he still wanted me to go for all-out for a cure, as sometimes if you can get it all in the first battle, you can actually get away clean. So I did the major debulking surgery, 6 rounds of carbo-taxol, 28 rounds of IMRT pelvic radiation, and 3 vaginal internal brachy radiation over 9 months of 2008 & 2009, finishing up July 1. That bought me 5 months of blissful remission.

But my last cancer-monitoring routine check-up, my CA-125 shot up from 12 to 154. That triggered a CT-scan that showed some questionable areas, which triggered a PET-scan and the diagnosis that I have enlarged malignant lymph nodes (none bigger than an inch) in my pelvis, behind my stomach, and in my armpit. ARGH! My worst fear come true.

I was also told from the beginning that if my cancer returned, we'd stop talking about a cure. I was given the option of waiting to start treatment until after the holidays, but opted to start a reduced dose of taxol tomorrow. It'll be a once-a-week infusion, and if it doesn't lower my CA-125, then we'll decide if enough time has gone by since my earlier chemo to add carboplatin back with the taxol, or move to Doxil.

I think that one of the reasons UPSC has only a 15-month statistical average life expectancy after recurrance is that it is so rare, and so few drugs are approved for it. The chemo-oncologists try to copy what has worked for ovarian serous cancer for UPSC recurrances, and then they have to fight like crazy to get any new drugs covered for us, and the insurance companies seem to dictate what I'll be able to get. So I'm going to be coming here to you Teal Warriors for advice on the drugs they recommend for me and the side effects, etc.

With all sincerity, I must tell you that the courage I see evidenced by each of you in fighting battle after battle with the beast, is probably the reason I have been able to accept my recurrance with the grace that I have been able to muster. How can I allow myself to sink into dispair when I see how you all live with joy and courage under the same circumstances? And I have my faith in a loving Father and Savior.

Sorry for the long post. It's been a long couple of weeks.

Comments

  • JoanC
    JoanC Member Posts: 231 Member
    #2
    You are an inspiration
    Linda,
    I am here for you with prayer and hugs. Your picture with you pointing to your bald, beautiful head gave me the courage to do the same. Your post are funny, helpful and encouraging. Go forward teal warrior and keep fighting the battle and posting.
    ((HUGS)) LOVE and PRAYERS,
    Joan
  • jtotten1
    jtotten1 Member Posts: 21
    #3
    We're All In This Together
    Please know that you are not alone in your battle. Remember that you became a "survivor" the day you were diagnosed, so never never NEVER give up the fight. No one has an expiration date barcoded on the bottom of their feet.

    Stay strong & keep us posted...
    Hugs & Love
    jme
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #4
    JoanC said:

    You are an inspiration
    Linda,
    I am here for you with prayer and hugs. Your picture with you pointing to your bald, beautiful head gave me the courage to do the same. Your post are funny, helpful and encouraging. Go forward teal warrior and keep fighting the battle and posting.
    ((HUGS)) LOVE and PRAYERS,
    Joan

    Joan, glad you like my bald look since I'm getting taxol today!
    Thanks for your encouragement! I have 3 infusions of taxol before Christmas, so I guess I'll be sporting a bald head again under my Santa hat. The current photo I have posted was taken in Greece and is my new little hairdo that grew during my remission. I had my chemo curls shaped up and colored for my Remission Celebration trip in October to Greece, Italy and Turkey. I'm so glad I made that trip while I could! My 1st 'recurrance chemo' is at 12:30 today.
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Aggghhhhhh!
    I didn't want to hear that this is happening to you too. I am just a little ahead of you. Had my 5th dose of carboplatin last week. I had gone since the Fall of 2007 without carbo but had plenty of taxol. I will most likely be switched to doxil at the first of the year. Not until Feb. as we are cruising the Panama canal for our Golden Wedding Anniversary, and I want to feel good for that. Each appointment, I am told that we will soon switch to another chemo, that I will probably have pretty regular chemos from now on, etc. Faith will see us through to face what must me faced and not dwell on the what ifs. Glad you got to do the trip. I promise you that you and I will have many more. Take them when we can in my motto. Saundra
  • Mawty
    Mawty Member Posts: 133
    #6
    Linda and Saundra,
    I'm just
    Linda and Saundra,

    I'm just so sorry to hear about your new cancer, Linda, and, of course, I've been following what's been happening with you, too, Saundra. Continued prayers.

    Marty
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #7
    sorry to hear
    Linda,

    I may be in a similar situation as you. I am 8 months out of chemo. My surgeon has suspected reoccurance in me since before 6 months due to my on going bowel symptoms. Fortunately, I still have no confirmed reoccurance. I had a PET/CT last month. The CT was clear but the PET showed one hotspot on my colon. I go for a colonoscopy on 12/9. I had a CA125 drawn today. I'm still hoping the hotspot is a polyp. It always surprises me how many people are in the same situation. I have a love/hate relationship with this discussion board. I find it so scary to see what may be my future but I also find comfort and hope. Best wishes Linda. Keep us updated.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #8
    So Sorry to hear this
    Dearest Linda, I am so sorry to read of your recurrence, but know with your spunk and attitude it won't hold you back for long. You are so right on that Grace allows each of us to live life to fullest and most days in J♥Y. Sending lots of Hugs ♥ Prayers Bonnie
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #9
    papillary serous and statistics
    Would papillary serous ovarian and uterine have the same statistics? I have papillary serous ovarian. My oncologist too spoke of possible cure. I try not to get too caught up in stats. Afterall, I read one stat that said if your ca125 goes under 10 the length of remission is longer than those that don't go under 10. I've read several stories of women who don't meet those statistics.
  • LPack
    LPack Member Posts: 645
    #10
    Sorry to hear
    Linda,

    Sorry to hear of your recurrence, too. It does seem as if many of us are in the same circumstance or close.

    So glad you took your trip. We were planning a cruise for our 35 for next year, but with my treatments being off so much now, we need to wait. And we will go sometime next year, just not February!

    Keep us posted and know we are praying for you.

    In His Grip,
    Libby
  • LPack
    LPack Member Posts: 645
    #11
    nancy591 said:

    papillary serous and statistics
    Would papillary serous ovarian and uterine have the same statistics? I have papillary serous ovarian. My oncologist too spoke of possible cure. I try not to get too caught up in stats. Afterall, I read one stat that said if your ca125 goes under 10 the length of remission is longer than those that don't go under 10. I've read several stories of women who don't meet those statistics.

    CA125
    Nancy,

    I was under 10 for several months and my remission was I believe over 6 months but my onc/gyn says under six!! It is now 12.2 and still have treatments to go.

    Libby
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    #12
    LPack said:

    Sorry to hear
    Linda,

    Sorry to hear of your recurrence, too. It does seem as if many of us are in the same circumstance or close.

    So glad you took your trip. We were planning a cruise for our 35 for next year, but with my treatments being off so much now, we need to wait. And we will go sometime next year, just not February!

    Keep us posted and know we are praying for you.

    In His Grip,
    Libby

    Linda
    So sorry to hear you had a recurrence of this beast. Glad that you took your trip. I had to wait until I finished radiation then I went out West only to have the cancer come back on me in October.Your not alone. Will be saying many prayers for you that the next chemo knocks the cancer back.
    Hugs and Prayers, Terry
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #13
    nancy591 said:

    papillary serous and statistics
    Would papillary serous ovarian and uterine have the same statistics? I have papillary serous ovarian. My oncologist too spoke of possible cure. I try not to get too caught up in stats. Afterall, I read one stat that said if your ca125 goes under 10 the length of remission is longer than those that don't go under 10. I've read several stories of women who don't meet those statistics.

    Nancy: I was initially Stage III-c, & still told maybe a cure!
    They know so little about UPSC that it is hard to say if the stats are similar for Ovarian Papillary Serous, and I comfort myself that these sad stats include fat people and really old people and people with concurrent medical conditions like a bad heart and diabetes, etc.

    You look young and strong, and have a really good chance of finding yourself in the small lucky happy percentage that beat the odds. My cancer was already Stage III-c when it was discovered, so unless you are Stage III or IV, your prognosis may be much better than mine. ((((Hugs)))).

    My CA125 was 11 after my last treatment; I don't think CA-125 is a reliable marker for most people, but has so far been reliable for me. I had my first recurrance chemo yesterday and am curious what my CA125 will be when I get it drawn on Monday. (I will have a CA-125 taken every Monday before my chemo infusion to see if I can get away with this low weekly taxol dose, which is just 1/3 the strength of what I took last year every 3 weeks, & last time the taxol was also mixed with carboplatin. If my CA125 doesn't drop after 4 infusions, they'll be changing my chemo; maybe even sooner of my CA125 goes up a lot.)
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #14
    LPack said:

    CA125
    Nancy,

    I was under 10 for several months and my remission was I believe over 6 months but my onc/gyn says under six!! It is now 12.2 and still have treatments to go.

    Libby

    ca125 under 10 and reoccurance
    I've read stories of women who had went under 10 and had reoccurence in 6 months or less. My lowest was 7. I am now 8 months out of chemo. My surgeon has suspected reoccurence since my 6 month check.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #15
    lindaprocopio said:

    Nancy: I was initially Stage III-c, & still told maybe a cure!
    They know so little about UPSC that it is hard to say if the stats are similar for Ovarian Papillary Serous, and I comfort myself that these sad stats include fat people and really old people and people with concurrent medical conditions like a bad heart and diabetes, etc.

    You look young and strong, and have a really good chance of finding yourself in the small lucky happy percentage that beat the odds. My cancer was already Stage III-c when it was discovered, so unless you are Stage III or IV, your prognosis may be much better than mine. ((((Hugs)))).

    My CA125 was 11 after my last treatment; I don't think CA-125 is a reliable marker for most people, but has so far been reliable for me. I had my first recurrance chemo yesterday and am curious what my CA125 will be when I get it drawn on Monday. (I will have a CA-125 taken every Monday before my chemo infusion to see if I can get away with this low weekly taxol dose, which is just 1/3 the strength of what I took last year every 3 weeks, & last time the taxol was also mixed with carboplatin. If my CA125 doesn't drop after 4 infusions, they'll be changing my chemo; maybe even sooner of my CA125 goes up a lot.)

    stats
    I am stage 4 and I was diagnosed about the same time as you. Sept. '08 diagnosis & surgery. I finished my chemo April '09. I comfort myself with those same facts! My doctor spoke of possible cure even thou I was stage 4. However low the odds are the fact is somebody makes up those odds. My ca125 was at a 7 post treatment and a 9 at my 3 month check. It went up to a 12 at 5 months then back down to a 10 at my 6 month check. I had a pet/ct due to ongoing bowel symptoms.
  • bluerose
    bluerose Member Posts: 1,104
    #16
    I am so sorry to hear this Linda
    I was heartbroken to hear about your recurrance Linda but know that with the help of the Teal ladies on here you will get through yet another battle. They helped me a great deal when I was grappling with the 'what if's'of my cyst and node and I still touch base as they continue to monitor my situation - still feeling it is benign but they are following up now every 3 months to check and see how it looks.

    One step at a time Linda, it's all any of us can do, you are intelligent and have tons of common sense and I know that you will make the right decisions on how to proceed from here with what the docs are saying to you. You have all of our support, I am usually hanging aroud Emotional Support more than here but I will check in here to read about your updates now and again.

    Keep the faith Linda, I know you will and remember that even if a cancer can't be cured nowadays with all the latest in treatments it can be a manageable chronic illness.

    You are always in my prayers. Hugs, Bluerose

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