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Confirmed that mom does have UPSC

wonderingalice
Posts: 49
Joined: Feb 2010

My mother does have UPSC with a first recurrence. I'm glad at least to have found this place where people are going through the same thing.

Please can you tell me who here is or has undergone second-line chemo after a recurrence? Linda, I know you are about to start.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I respond to your email on a happy day, because I just this morning learned that I am in remission and on a chemo break again! So please do not dispair!

:D

I was diagnosed with a recurrence in November 2009 when my CA-125 shot up to 155, (it was 12 following my initial treatment protocol). I had 10 rounds of 1/3 strength Taxol from Dec. 10, 2009 up until 3 weeks ago, with weekly chemo infusions every Monday for 10 weeks. I also got Neupogen shots to keep my immunity up every Tursday, Wednesday, & Thursday. With this weak 'fractionated' chemo, I never felt nauseated and had no bone pain or neuropathy, so it was an easy chemo for me. You might want to see if they will try that with your mother. After 10 rounds it seemed like my CA-125 had flattened out to the mid-40-range, so we did a CT/PET to see what was really going on, with the thought that we might want to switch chemos or add in carboplatin to my chemo-cocktail. We were all surprised and pleased when my CT/PET was CLEAR, with NOTHING lighting up and 2 of the 3 lymph nodes that lit up on my November 2009 PET scan not even visible, and the 3rd one now very small and did not light up at all. So, even though my CA-125 is not within the <35 'normal range', it is close at 42.5, and may be MY new normal. So I am officially on a chemo break, less than 4 months after I was given the same sad scary news your family has just received. So please know that there is hope. This may not be endless chemo for the rest of your mother's days. I'm going to spend the afternoon planning a VACATION somewhere fabulous! (((HUGS)))

wonderingalice
Posts: 49
Joined: Feb 2010

Hi Linda, thanks so much for your reply.

For now, because there is new growth at the site of the newest tumor (mass on her bladder debulked 1/22/10) and due to the other issues my mom is having they have decided to forego the chemo infusion that was indicated by the tissue assay, and try a couple months of an oral estrogen-inhibitor, Arimidex We are hoping with all hope that we get a response from this.

You are proof that there is ALWAYS hope!

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