Primary Peritineal/Neuroblastoma Connection

Hello All,
Desperately searching for others like our Jodi.
My beloved sister, Jodi, passed away after a long fight with Primary Peritineal Cancer in January of 06. She was only 30. She was treated as an Ovarian cancer patient would be, like I've heard so many with PPC are.
What's unique with her, or our story, is that she survived Neuroblastoma as a baby back in '75. Her cancer came back, found in her pelvic floor actually, in 2000.
We are trying desperately to find others that came from surviving neuroblastoma as children but have been hit with cancer again in their late 20's. Surviving that cancer was rare to begin with but know there are a few out there, somewhere.
We have a very long story we want to share with the world about her & her care but want to start with trying to find others out there like her/us. We were pretty much told she was one in a milliion, sort of speak. They think it all stemmed from when she was a baby, just laid dormant until she was 25.
Feel very alone in this world without her & want badly to even help one other woman that feels alone from having had childhood cancer(really neuroblastoma).
Due to the HIPPA law, are research at hospitals for names is impossible.
Thank you for your time. For a survivor of Ovarian, baldisbeautiful.com is an amazing site. We just need a site for those that have LOST and need answers about others out there.
-jodis's sis

 

On 12/16/2007 jodissis wrote:

Hello All,
Desperately searching for others like our Jodi.
My beloved sister, Jodi, passed away after a long fight with Primary Peritineal Cancer in January of 06. She was only 30. She was treated as an Ovarian cancer patient would be, like I've heard so many with PPC are.
What's unique with her, or our story, is that she survived Neuroblastoma as a baby back in '75. Her cancer came back, found in her pelvic floor actually, in 2000.
We are trying desperately to find others that came from surviving neuroblastoma as children but have been hit with cancer again in their late 20's. Surviving that cancer was rare to begin with but know there are a few out there, somewhere.
We have a very long story we want to share with the world about her & her care but want to start with trying to find others out there like her/us. We were pretty much told she was one in a milliion, sort of speak. They think it all stemmed from when she was a baby, just laid dormant until she was 25.
Feel very alone in this world without her & want badly to even help one other woman that feels alone from having had childhood cancer(really neuroblastoma).
Due to the HIPPA law, are research at hospitals for names is impossible.
Thank you for your time. For a survivor of Ovarian, baldisbeautiful.com is an amazing site. We just need a site for those that have LOST and need answers about others out there.
-jodis's sis

 

hi, I'm so sorry about your sister. I can't imagine your pain.  My sister is only 46 and was just diagnosed with primary peritineal cancer just this week . the first diagnosis was Abdominal wall cancer. she is going through chemo now and just had a blood transfusion . I'm so scared. We live in the Buffalo NY area, and she is going to Roswell for treatment. She has lost so much weight . I know there are drugs now that they say can cure cancer but have not tried them on humans yet. I 'm going to get tested for this type of cancer since it is hereditary .  Any information on treatment or advice is greatly appreciated. thank you, Marcia  

Marcia,

My mom emailed me back & said your sister is an an EXCELLENT hospital. She heard a doctor from there talk at a conference & was extremely impressed. Definitely email her, and me, & we'll go from there on sending you info on what we know from our experiences in Connecticut.
-jodissis