to tybear

[SimplyStar]

Becky did you say you were dx with micro pappillary serous OVCA?   That is what we finally found out yesterday for Leslee, Dr told her, her chances of getting that were 2%. Also the gene results finally came back . No BRAC1-2 genes found. Also told her with this clinical trial they expect a 83% remission after 6 months of treatment. I read through the side affects of Topotecan and Tykerb, which is what she is on, and they sound like a very close watch is going to be necessary.  Hope you are feeling better after the rough times this past week.

[SimplyStar]

You have mentioned that you have a Kidney stent, did your kidney go bad during your first round of chemo?  Leslee actually has 4 kidneys, we thought 2 of them to be immature, but during surgery they were all found to functioning. She has had many periods of cystitus through the years which always cleared up with medication. She was dx in late June of 2006,  surgery July 3rd,  began chemo 2 weeks earlier than they expected and finished mid November,  felt fairly well througout that time. 2 clean scans prior to chemo, CA125 went down to low numbers,  2 more  clean scans 1 month apart, bladder scan clean,  Feb CA125 went to 12,  March 1st 16,  April 1, 84, went to Mayo, radioactive dye scan showed 4 small lesions on the abdominal wall, scheduled for the clinical trial phase 2 of Topotecan and Tykerb , 39 women selected, she was the first to begin on the 21st, being run by GKS and Mayo. Gets Topotecan  3Xs per month,  like on the 1st, 8th and 15th, takes 1250mg of Tykerb daily { 5 pills} , Tykerb has been used with sucess on breast cancer, was approved for OVCA the day she began,  they told her she would probably breeze through the first couple of months,  Tykerb along with chemo in Breast cancer  proved 83% effective. Interic coated with a life of 24 hours, works on the cell to cause a portal for the chemo to enter. I printed out 18 pages of info on this drug. Her docs at Mayo do not like to do surgery for secondary lesions that are small.  They told her Monday that her chances of getting this type was 2%, and that the Gene search she had done showed no mutated BRAC genes. She had to stop her Vit C, and evidently grapefruit has something in it that inhibits  Tykerb.  At the conference at Mayo , Leslee asked them if they had, or someone in their family had this, would they enter this trial, all  definitly said yes. They felt it was possibly the best available right now. Les is working every day and appears to feel ok, so far. Guess we just have to wait and see. Hope this finds you feeling much better.

[Tybear]

WOW! What are the chances of her having the same freaky diagnosis as me! Well, I assure you, I've done my research on this one, so if you have any questions, fire them my way! What is the trial that she is on? I go to see my onc next week to see if my trial worked (which, judging by the CT I had done in emerg last night, it didn't) I'd love to bring some information with me. I've also got some good articles about surgery after MPSC recurrence and there's a MPSC forum on the Johns Hopkins website - let me know if you want them.
Gosh, I'm dumbfounded about this. I guess we were meant to meet....
Becky

[hatgal]

After all of your help, I must let you know that you and your daughter are in my thoughts and prayers totally.  I don't quite understand the medical terminology, but I hope all will be o.k.

Bless.........
Elizabeth