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LindaProcopio on Ovarian Board

nancygt
Posts: 86
Joined: Jan 2010

I don't think I saw it here on the Uterine Board but Linda is going through a really tough week and I saw her post on the Ovarian board and thought I would mention. I go there regularly too as my doctor always refers to my UPSC as Ovarian as he feels it has far more in common with that than with typical endometrial cancer.Not only is she facing a big jump in CA 125 but worried about what chemos remain, whether her insurer will pay for another PET scan 2 months later (my onc and I just fought that battle). If I missed her post here, I apologize but decided I would rather be safe than sorry since she has been such an inspiration and such a great source of info. I had my first of 8 Cisplatin/Adriamycin chemos a week ago and haven't been on much since today is first day I came close to feeling like a normal human being again.

Kaleena's picture
Kaleena
Posts: 2064
Joined: Nov 2009

Linda:

I really wish there was something I could say or do to make you "feel" better after receiving the news of your CA125 and your treatment. You are such a strong person. I know that all of us ladies here would just like to be there for you. {{{Linda}}}

My prayers for you on your PET/CT scan on Monday. Also, I hope your insurance pays for it. I know that PET/CTs are often covered if it is ovarian, so maybe there is a way to get around it so that your insurance does pay for it. I think that is why my original doctor said that I have endo but we are treating it like ovarian. I never understood that before but I believe it was to be able to get all the tests covered.

I think the hardest thing for you to do is to tell your family and I think that is what is worrying you the most. You care so much for others and you don't want them to feel bad. May you all find comfort in the love you have for each other.

Sending you prayers and hugs,

Kathy

nempark
Posts: 683
Joined: Apr 2010

Nacy: I think this is so sweet of you to inform us on this board about Linda. I don't think she has posted anything yet on this board, she probably dosen't want to worry us. What a stalwart she is. You be well!!!!June

hopeful girl 1
Posts: 454
Joined: May 2010

Nempark,
Those were my thoughts exactly, Linda doesn't want to worry us on this board.
I read her post and her CA125 doubled in a week, and her oncologist noted his concern.

She is getting a scan this week.

Let's all send prayers and positive healing thoughts her way.

Cindy

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you for letting us know what's been going on for linda; i've been wondering since haven't seen any posts recently from her. it makes me so sad, and so mad that she has to go through all of this , and has to worry about insurance coverage as well. btw, my doctor also had to fight to get me a pet scan, and probably will again.

i wonder if linda had an assay of her tissue; i think she did; hopefully there were several chemos that could make a difference. i know when i had my assay done, there were several top combinations of chemos that seemed effective, and others that i could try, that i had never heard of. i assume she's getting the best of care; sure hope she posts here soon. we all love her so much.

cisplatin/adriamycin sounds like a heavy chemo combination. how did your doctors arrive at those? i imagine this is for a recurrence. i sure hope you continue to feel more normal, and that each infusion doesn't just knock you out. it's tough, nancy, and i sure don't look forward to what is probably another chemo in my future--unless the hormone regimen i'm on miraculously makes a difference. hang in there, nancy.

sisterhood,
maggie

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

thank you for letting us know what's been going on for linda; i've been wondering since haven't seen any posts recently from her. it makes me so sad, and so mad that she has to go through all of this , and has to worry about insurance coverage as well. btw, my doctor also had to fight to get me a pet scan, and probably will again.

i wonder if linda had an assay of her tissue; i think she did; hopefully there were several chemos that could make a difference. i know when i had my assay done, there were several top combinations of chemos that seemed effective, and others that i could try, that i had never heard of. i assume she's getting the best of care; sure hope she posts here soon. we all love her so much.

cisplatin/adriamycin sounds like a heavy chemo combination. how did your doctors arrive at those? i imagine this is for a recurrence. i sure hope you continue to feel more normal, and that each infusion doesn't just knock you out. it's tough, nancy, and i sure don't look forward to what is probably another chemo in my future--unless the hormone regimen i'm on miraculously makes a difference. hang in there, nancy.

sisterhood,
maggie

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

for letting us know about Linda. I've been worried that she hadn't posted in a while. I'm sending my love, support, positive thoughts, and prayers her way.

Also - for you Nancy.

Suzanne

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

(sorry I got impatient & clicked twice & double-posted. See post below).

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I didn't post my rapid CA125 rise, or that they now think that the carboplatin I've been getting is not working, on this Board because I do hate to scare or worry the newly diagnosed or the newly recurrent. On the Ovarian Cancer Board, recurrence is something they deal with every day; we lost 4 dearly loved posters on the OVC Board in 2010. It's hard to scare those warriors; their experience with "bumps in the road" is extensive, sadly.

But on THIS discussion board, we have been more shielded from scary stories like my story is becoming. I remember when I started posting here in late 2008 that there were just the 4 of us with UPSC {Peggy: a 2-year/no recurrence survivor; and Marge, Deanna, and me who were all just done with our surgery and starting chemo at the same time.) We were all filled with hope and determination to be CURED, and more and more UPSC ladies started to find us but everyone was just starting out with their surgery or chemo. We may have had disturbing side affects to our treatment to share, but no one seemed to be LOSING the battle with cancer. I guess I just wanted to keep this a place of hope and not make it one more scary place on the web filled with things that keep you awake at night in worry and dread. I think each of us with a recurrence are afraid that we will worry those of you newer in this journey. So let me say this: of the original 4 posters on this Board: Peggy, Marge, and Deanna are ALL STILL NED!! 3 out of 4! Hang onto that great odds!!!

That being said, I do appreciate the support you've all given me. My labs from Thursday show my CA125 at 876, up ANOTHER 100+ points last week. I was waiting to tell you this latest chapter of my battle once I had a new plan in place, to keep this upbeat. I don't have that yet. I still don't have a CT/PET scan appointment yet but will be on the phone tomorrow pushing for it. Meanwhile I had a lovely happy weekend, with my grandkids staying over and we went to Emily's soccer game and Jakey's basketball game and to Friendley's and 2 pet stores. I am over the shock. I have worked my way back to my usual peace and my family is following my lead. I FEEL good. & maybe the next thing will work!

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Linda, SO glad to hear you enjoyed your weekend with family - keep making every day count. We know better than most how important that is.
Also, do want to thank you for the thread you started, way back when, calling for UPSC survivors to post together. The size of thread brought it up in early results on a Google search and that's how I found you all! Always the proactive gal!
Hang in there Linda -- "it's not just who'll drive in the limo with you, but who'll join you when you have to ride the bus" (Oprah)-- we're with you in the limo or on the bus.
Annie

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I just feel so bad for you, but am so glad you include us in your posts. I am sorry that your CA 125 continues to rise. This still is a place of hope. I appreciate your vast knowledge and your willingness to share what you know. You have been such an inspiration to me. I joined this board in January 09 after my first chemo. You 4 initial warriors have been such an inspiration to me.

We don't want you to always be upbeat, as we want to be there when you need support too. You always have encouraging words for everyone. I care about you very much. I am wishing you get your new plan soon, as I know you want to continue the FIGHT.

Glad you had a happy weekend and you continue to feel good. My prayers continue for you multiple times a day. In peace and caring.

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daisy366
Posts: 1493
Joined: Mar 2009

I echo Ro's comments. You have been a role model to me - thanks for all your WORK and DEDICATION in providing information and inspiration and hope to me. I, like Ro, joined this site soon after the initial 4, and I have benefited from all your knowledge and experience.

I appreciate your wish to keep this a comfortable place for us, but I think we need to be real here too and not in some fantasy world. Your story of struggle with recurrence is real. I want to be here for YOU as you have been here for me and others these last 2.5 years. I'm walking with you on this journey - I've got one recurrence under my belt and my fingers are crossed. I start each day with gratitude and intention to enjoy all the wonder offered to me. I will be here with you and for you and others as they walk the path.

It's OK for you to be scared of the unknown - to cry and be vulnerable - you are human after all!! Take heart, Linda - you have great docs. I'm confident that they will win the fight with the insurance company to get you the care you need. Please know that you are being lifted up in prayer by many. Please keep us posted.

Sending love and hugs to you, Mary Ann

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I agree with Mary Ann, you've been a trooper and role model for many of us here. We know cancer is scary and does go different paths for all of us, but you know what WE'RE ALL IN THIS TOGETHER. So.....the bad spots in our lives...come back and do share them with us...we want to help you soldier the journey. Nice to have people by you holding your hands (even if in cyberspace).

I know and feel in my heart you'll get thru this, as you've done all along your journey. Let us help you...don't cover up the unknowns, as we're here to comfort and guide you. You've been a rock to many of us and we in-turn want to be your rock.

Again, plse keep us posted...we care!!

Jan
(((( hugs ))))

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

this site is still a place of hope, for you and for the rest of us. i realize your numbers are up, and that's not what we want to see, but i've always believed there are chemos out there for you that will work. when you had your assay done, what did they come up with? i've recently had an assay done and they tried out 16 different combinations of chemo, several of which looked effective and promising, plus some chemos i've never heard of. that has to be true for you, as well. do not give up. i personally don't resonate with the battle/war perspective, i feel more sad for our poor bodies and what they are going through, and have to endure. so, while hope is definitely alive, we want you, as well as the rest of us to be able to tell the truth re: what's happening. knowing you, you will have a new plan in place soon. there really is more out there than the the carbos and taxols, etc., and you never know what will work. maybe even hormone therapy as this point is a possibility, however small. i'm on tamoxifen and megace, and once they added the megace i started to feel better and have more energy. i don't have the slightest idea what that really means except that i feel better, which is a lot in itself.

we are all so with you, linda, and i KNOW there is something out there that will work for you. i feel it in my bones.

sending love,
sisterhood,
maggie

hopeful girl 1
Posts: 454
Joined: May 2010

Linda,

As mentioned by all, we are in this together and we all care about one and other and are here to share the good news, along with the bumps in the road.

Even though that CA125 number is rising, it may just be that your body is no longer responding to the carbo now. I feel very strongly as well that your team will put together a new program that will knock your CA125 right back down. The treatments just keep getting better and they keep coming up with new combos.

Plus the fact that you are feeling well I think speaks volumes.

Glad you enjoyed your week-end. Good luck getting that scan appointment locked down.

Hugs,
Cindy

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Linda
You are such a caring person to not want to worry us. But I share everyone else's thoughts, concerns and love for you at this difficult time.
We're all here for you, hoping and praying that the next chemo or treatment will knock those darned numbers back down.
We're here to share the good and the less good news together - let us be here for you like you're always here for us.
Some serious thoughts and prayers for your wellbeing will be winging skywards from me tonight.
Love
Helen xx

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