advice to anyone with OVCA

[SimplyStar]

Stay on top of it always, insist on the best care, tell them you are important to many people , get all the facts you can and use them, don't take no for an answer ever.

[bohan54]

Good advice, it's basically like a full time job only 24/7 instead of 9 - 5.

[withe]

The only thing I would add to the above advice is keep track of all treatment procedures dates, WRITE DOWN EVERYTHING !!!!!

[nyc lady]

Our Chapter of the NOCC has done a program for newly diagnosed women that we are calling Totes For Hope which has numerous items to help, such as books of encouragement, pamphlets, knit caps and most importantly a JOURNAL.  Not only to track treatment but to write what how you are feeling, symptoms even questions to ask the doctor.  Advocating for your own health care is more then a full time job.

The American Cancer Society offers a great medical manager for free, just by calling, at least they do here.  It is a great portfolio to have and helps track everything.

[Tybear]

Thanks for posting this Marty...I would like to add as well, that you should get copies of EVERYTHING for your own personal file. Blood work, tests, procedures, surgical records...keep records of it all.

[crecco]

Thanks for posting such good advice Marty. This is our life we are dealing with, and the more that we know about what we are dealing with and the more we get involved with the Drs and out treatments, the better off we are.
  Chris

[SimplyStar]

Just got a call from Leslee, Mayo was good for her this time, they removed the urinary cather, said she didn't need it, started her in Etopepside SP?   once daily  q 20 days off then for 10, ca125 was 475,  that was not changed from last time, it has been 1 month now since last chemo, Mayo was very upset with that,  her pain levels have leveled out greatly, she she really afraid of addiction, we talked  for an hour, they told her that her cancer was treatable and they would work with her on it, they were very upset about the hospice thing,  She asked me to find out all I can about the new chemo, have any of you been on it?  it looks like it is a plant chemo and inhibits the DNA for cell division and kills the cells especially when they are dividing fast. some side effects, mostly nausea.  she feels much more proactive now and not so down, I also feel encouraged.   More later

[silver&gold]

Im so glad that things are moving in the right direction for Leslee now . Its good that her spirits are lifted and shes not so down . I hope that after this positive meeting things turn around fast for her .

Take care Angie

[Kimchi]

That's the best news I have heard this week...Thank goodness she stuck around and was able to talk to Mayo drs.  Why is Mayo upset that her ca125 has not changed? Didn't she stop her chemo a while ago? I think it;s a good sign that it has not gone up.
What a relief for you and Leslee to know that there are option...going to do some research on this new med.  
Now I hope you put this tense week away and have a relaxing weekend.

[crecco]

Marty,
  I am so glad that you have finally recieved some good news. I know that must take a heck of a load off of your shoulders. While I can't help with the chemo, I can continue my prayers.
  Love Chris

[TrudieC]

Marty, so glad to hear this news and also nice to hear Mayo may once again live up to our expectations.  I hope you have even better news when I'm back from holidays.  Hope that you too are holding up well and managing the stress.

Take care,
Trudie

[marie3B]

This is very encouraging.  I am glad they found a way to help.  Marie

[gma718]

SO SO HAPPY for you and Leslee...Seems like our prayer chain did work!!! I will continue to pray for her and am so glad she is feeling positive and received encouraging news...Keep us posted and I am sending you and her positive thoughts!  Love, Gia

[lvfrogs]

Marty,
I am very glad to hear this for Leslee and for you too. You are always in my prayers and I hope to keep hearing good news! Hugs and prayers, Colleen

[withe]

Was on ORAl etoposide for two cycles, minimal side effects, Did however have to fight with my insurance co. to pay for it. Withe