SimplyStar...question...

[Tybear]

Hey Marty...I'm going to see my Dr on Monday to find out whether or not this trial worked. I would like to go prepared for both scenario's, and would like some more information on the trial Leslee is in. Do you have any links to articles or websites that I could print off some stuff to take with me? Any info you think would be beneficial, please pass it my way. If this trial hasn't worked, I want to start on something else ASAP. As well, I'm wondering if Leslee's doctors have mentioned a second surgery at all...from what I've read, secondary surgery is the number one predictor for survival with MPSC.
Hope Leslee is doing well..
Becky

[SimplyStar]

Hi Becky  Hope this helps you find out about this trial   I went to web search  Mayo Clinical Trials for OVCA  brings up their web site  along the left hand side is clinical trials   Leslee's is the first one listed   Topotecan and Tykerb  she gets 3 infusions per month, 1 week apart, 2 weeks recovery time then starts over, she takes Tykerb per mouth daily  2500mg this trial is to last at least 6 months if tolerated and shows signs of sucess. They refused to do any surgery at this time, she has 3 very small lesions on the abd wall,  her infusions last about 45 minutes, there are 3 small bags of it, the pills she has to take 5 of them, hugh  like big vitamines. She is 3 weeks into this so far, gets her 3rd infusion on Monday. this test is being done by GKS drug company, one of the largest in the world.  Tykerb was hughly effective in breast cancer. she has been feeling pretty good so far, her blood work is excellent, working every day, did get constipated but took care of that with MOM,  they will do scans and CA125's every 2 months, the doctors at Mayo are highly optimistic about this combo.  I did a lot of side research into Topotecan and Tykerb and also the the drug company , all seemed good.  Leslee asked the lead Onocologist at Mayo if his daughter had OVCA would he reccomend this trial and he slapped his hand on the table and said "I sure would"  I have to believe that Mayo would not have okeyed this trial if they didn't trust it.  Leslee is the first woman to get into this trial they wantat least 39, it is a level 2 trial.  anything else I can help you with let me know.  They    {the local ononcology clinic here that does her treatments} , kept pushing for her to get a port, but she refused, Mayo does not like them because of the high infection rate.  This place here is a satillite of Mayo, they do this so the patients do not have to travel so far.   Good Luck  Marty

[Tybear]

Thnaks for the extra info, Marty. I will go to that webite and check it out. On a personal note, I would so highly recommend a port, especially if she's getting an infusion 3 times a month. My port is a god send..no problems with it whatsoever. I'd never heard of a probelm with infections...you should see the precautions they take when they access it! It's like a mini surgery...iodine, gloves and sterile equipment...the works. They go to great lengths to keep it clean. My veins are stripped and having simple bloodwork done has become a disaster. This last time, when I needed an IV of anti-biotics, it took the nurse 5 try's to find one lousy vein! Anyway, it's really a personal decision, so it's up to Leslee. What about a picc line? Ok, enough about that! Thanks again....Tell Leslee I say hi!
Becky