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Karenann--Tell Us About OCNA Conference Karenann--Tell Us About OCNA Conference

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Unread 09-23-2002, 06:45 AM
Karenann--Tell Us About OCNA Conference

Who you met, what you learned, etc. I hope you got to meet one remarkable lady, Martha Lip****z and a few others. Sandy Pnaiuskas from Canada (as close as I can spell her name) is awesome too. Has raised awareness up there to new levels!
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Unread 09-23-2002, 09:49 AM
Karenann--Tell Us About OCNA Conference

s Ellen

Hope you are doing okay!
It was just the most fantastic conference. And to answer your immediate questions:
I meet so many of the ladies from the list. They are just the most knowledgeable, articulate bunch of ovca survivors to be found.
Sandi from Toronto is very petite and gorgeous. Looks about 35 years old!
Martha (from Barb and Martha is how I think of her) was a moderator for one session. Another articulate woman. I went and introduced myself to Martha after the session. She is doing okay, but like she said, it has only been six months. It was good to hear her talk about Barb in person.
The biggest thrill for me was to meet and chat with Cindy Melancon of Conversations news letter. She is a tall woman with a beautiful complexion. Cindy is so down to earth. She presented the last session on clinical trials with a doctor from NCI. Cindy talked about how she had to fudge on some info to be eligible for the gleevac trial. She even had difficulty with her computer power points and had to get her husband's help on stage a few times. Just a regular lady. I feel blessed to have gotten a hug from her.
My sister and I also met the incoming president of the Society of Gyn Oncologists. His term starts in February.
The OCNA is such a political advocacy group. And I learned so much about what to do with my own interest in their area.
Clinical trials are so important. Only about 4% of ovca women participate. This is mainly due to the fact that the requirements are so stringent.
ie: women with neuropathy are excluded. This is one that fires up Cindy Melancon. I think this will an area that the OCNA tackles next. With so few clinical trials advancement is slowed. They need to allow more women to participate.
I could go on and on...........
Thanks for asking Ellen. Next year the conference is in San Francisco. I plan on being there.

Unread 09-23-2002, 12:43 PM
Karenann--Tell Us About OCNA Conference

Sounds like a great conference Karen!!
I bet Cindy ( of Conversations) is a lovely lady. She certainly is open and straight forward about her own battle in the newsletter, and I just bet she is indeed a sweetie!!

So nice to hear Canada had representatives there as well.
The news about the clinical trials and no one with neuropathy being considered makes me a bit uneasy...considering I still have that in my feet and probably always will.

Glad you got back safe and sound. Thanks for letting us know how you made out!!
M. xoxoxo
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Unread 09-23-2002, 01:48 PM
Karenann--Tell Us About OCNA Conference

s Maria

That's the problem with the way present trials are being handled. Too many reasons for exclusion. Many, many women finish their initial chemo with peripheral neuropathies. It is probably the number one side effect of taxol and carboplatin, as well as your chemo drugs.
So from that point on, if these women are honest, they are excluded from trials. That decision should be up to the individual woman. If they are willing to take the chance that the neuropathy may worsen.
When children are diagnosed with cancer, the huge majority are placed in clinical trials, (95%, this figure is from the Natl Cancer Institute) Along with the current standard of treatment. When my nephew was diagnosed with leukemia four years ago, he was placed in a trial. And he was treated at a very renowned children's hospital in Phila.
This is the reason so much advancement has taken place in treating childhood cancers.
So in order to advance treatments for ovarian cancer, we must be allowed in more clinical trials. This is what OCNA and Cindy from Conversations would love to change.
Now I have another soapbox along with the use of gyn oncologists!!!

Unread 09-25-2002, 06:05 PM
Karenann--Tell Us About OCNA Conference

Hi Karenann...
What a wonderful conference that must have been..Sounds as if you really had a great time and gots of information..I am sure that we will all be picking your brain from time to time.
I just wanted to tell you that I was asked to participate in a clinical trial when i was diagnosed. At first i was going to do it but then i changed my mind. My reasons were because things were not exactly as they said it would be. The treatments were supposed to be 8 instead of 6. ok that was not a real problem.. but then they said that on certain weeks i would have to have the chemo a few days in a row... big problem there at least for me. Then i asked them to hook me up with a reference person so that i could get information from her.. Well, they gave me a person that was sooo sick from the chemo that she said that she had not gone back to work for a year and that she did nothing but sit around all day. That was the wrong person for me to talk to.. There was no encouragement there. Sooo needless to say i did not do the trial but did finish my last chemo 2 weeks ago.
Please keep us posted with any new information.

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