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Just found another "sister"....a shockingly young one

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

My daughter just told me today that a young woman she went to school with has OVCA. I have friended her on FaceBook, and will try and get her to join us here. She can't be more than 36 or so.

This reaffirms my decision to participate in the vaccine trial. It's sad and awful to lose your mom to this crappy disease, even as an adult, but little kids should NEVER have to go thru that. Never. What if this were my daughter? Who would take care of her kids? She is a single mom, and her ex is not worth the ammo it would take to blow his brains out.

We need a cure, and an accurate means of detecting it early. I am so tired of everything being about the boobs. Granted, ovaries aren't as cute, but damn.....they can be just as deadly. New tee shirt idea: "I had my ovaries removed because they tried to kill me. Support Ovarian Cancer research."

Carlene

leesag's picture
leesag
Posts: 625
Joined: Jan 2010

"I had my ovaries removed and they're STILL trying to kill me. Support Ovarian Cancer Research"

I'll be adding your daughter's friend to my prayers. (and I love your description of her ex!)

Hugs,

Leesa

clamryn's picture
clamryn
Posts: 508
Joined: Jun 2010

Oh Carlene, you are so funny. I love it when you just say it like it is. I blurted out one time that there wouldn't be any boobs if it wasn't for these ovaries.

When I go to the doctor's office and I see the young ones with this terrible disease, it makes me sick. It just isn't fair.

Linda

VictoriaSF
Posts: 165
Joined: Dec 2010

i have a friend who is 26. young, energetic girl from Dallas. Full of ideas, about to open her own business. Stage 3c.... surgery, chemo and now waiting for results to find out if she is in remission.
it is very sad.
i am 44... when i spoke with one of our family friend who is 73 and 3 times cancer survivor she just kep repeating - "you just a baby, you just a baby"
it was sweet and sad...
and i will fight this monster so i have some more years to live

My motto and i think it should be for all of us - failure not an option!!!
And i hope God will help us.

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

when I see the very young ones being treated at my ONC's office. I have a friend who lost her daughter to OVCA at age 30. She was so accomplished, beautiful and bright. This beast has no boundries.
(((HUGS))) Maria

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I think that was why I was pooh-poohed by the GI doc, because of my age. I was diagnosed at 42yrs with 3yr and 5yr old kids at home. There is a lady I know on FB who is 36 or 38yr old single Mom who has been battling OVCA like us. SHe is now going to MDA this week due to her unsuccessful 2nd line treatments. Her husband/boyfriend died several years ago. Her son is 8yrs old or so. Another woman on facebook has a page up in memory of her daughter Meghan who was diagnosed while in college. Her facebook page is 'friends of Meghan. Let us not forget our own spunky 'chemo princess'. I think she is in her early 30s.

Carlene, I remember when I was first diagnosed it was important for me to meet other women like myself. Having a medical background I knew my disease was mostly a post-menopasual disease. I have been on the breast cancer board just so I could connect with other Moms who have young kids at home. For me, that was important. I like the slogan too. I do think we need something attention grabbing. Still haven't given up on Angelina Jolie being our spokesperson either!

Good luck to your friend. I just hope stories like mine won't send her into a panic. I think that "AngleasMom"'s daughter is doing well. She completed her inital treatment. She has 3 young kids at hom.

123missy
Posts: 26
Joined: Jan 2011

Love it, I, too, am tired of pink everywhere. The research is important I know but there are other cancers out there. We need a very prominent spokesperson out front.

Chemo_Princess's picture
Chemo_Princess
Posts: 105
Joined: Aug 2009

"I had my ovaries removed and they're STILL trying to kill me. Support Ovarian Cancer Research"
I LOVE THIS!! So true. And yes Nancy I'm a young fighter, diagnosed at 30, still fighting at 32. I don't have children and never will. I'm bitter and thankful at the same time. I was robbed of the joys of motherhood but I can't imagine going thru this and raising children. It's hard enough taking care of my 3 cats!!
Blessings,
Natalie

jloe's picture
jloe
Posts: 175
Joined: Sep 2010

I love the tee shirt thought. It's a shame about your daughters friend and the prayers are out there.

bluecanari
Posts: 6
Joined: May 2010

Dear Carlene,
I was also diagnosed at a very young age - I was 34... I recently heard of a girl who is 6 years old and was diagnosed with this disease :( It is breaking my heart...

I was wondering if you could give us some info about the vaccine trial you mentioned?

Hugs and kisses,
Claudia

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Claudia.....

It is a Phase I vaccine trial being conducted at Memorial Sloan-Kettering in Manhattan. Dr Paul Sabbitini is the doctor there who is in charge of the trial.

The criteria is pretty simple - you have to be in your first remission, following first line treatment with a platinum drug. You have to have had an elevated CA125 after your third treatment, but it must be normal now. You also have to present evidence that you are currently in full remission (recent CT scan and CA125 test).

I can give you the phone number/name of someone to contact, if you are interested.

Your insurance must cover everything except the vaccine itself, including CT scans every 3 months.

Carlene

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