Hi Nancy591 - how are you doing

nancy591 said:

thanks guys
I'm very touched, thank you for thinking of me. I have no good news to report so I'm not reporting anything. Well, I do have SOME good news. My liver enzymes are FINALLY coming down so hopefully I can start Avastin again soon. I had chemo on Friday so I'm still feeling sluggish.

Beach Club has DELICIOUS food...OMG. Very nice place. I've never stayed there but it looked so lovely. I hope you have a great time. Hopefully I will be up to going in October.

anicca said:

Your liver enzymes coming
Your liver enzymes coming down IS good news!

LaundryQueen said:

Liver enzymes
Nancy

I'm so happy that your liver enzymes are back down. Beets and beet greens have nutrients that help the liver and would be good to eat to keep your liver strong. Just don't freak out when eating beets gives you red urine and BMs.

lindaprocopio said:

Maybe you'll go back to cytoxin/avastin next.
Sorry the taxol isn't the consistent magic bullet I thought it would be for you after such a long break from it. Taxol twice brought me into remission. When taxol finally stopped working for me (after having had 6 carbo/taxols and 17 single agent fractionated taxol infusions), it was just allowing my CA125 to slowly inch up. But a CT/PET showed progression on taxol and we had to walk away from it and try something new and my oncologist said it's unlikely we would return to taxol.

So, by doubling, what kind of CA125 are you talking about? Like, when women post that their CA125 of 8 has gone up to 16, I think of that as a non-indicator/non-event, nothing I'd ever lose sleep over personally. But if my current CA125 of 1200 doubled to 2400, I'd have a hard time ignoring the implications of that. But I also know that CA125 hasn't been a reliable indicator for you, right? When do you get a CT/PET next? My oncologist always does a CT/PET to get a new baseline for any change in chemo, and since I recurred in fall 2009 that has been every 3 months, except last time when we couldn't wait that long and I had a CT/PET after only 2 months since the last one. I hope I'm not now on the every-2-months scan schedule, but that will depend on what my CA125 tells me.

Do you think your oncologist would return to cytoxin/avastin for you? That combo didn't actually FAIL you, right? I have been on cytoxin/avastin now 6 weeks, and hope to take it long-term. But I'm guessing if it doesn't start to drop my CA125 in bigger jumps, that my oncologist will be looking at a new scan in a couple weeks. Maybe not. I think Gemzar or Topotecan are my next options and both could be too harsh for me with my crappy platelets and RBC problems. He may want me to ride this one out as long as we can, since my options seem pretty limited now. Cytoxin/Avatin has been SUCH a wonderful chemo as far as how I feel. It's almost like being on a chemo break; I feel that good. I can work in my garden for 4 or 5 hours, and run around a 12-hour day with my grandkids without getting that horrible fatigue. I can eat anything and my bowels and digestion are almost normal. My WBC and RBC and platelets are at safe levels (platelets just barely, but still..).

I am rooting for you, Nancy. & you're right, it could be the inflammation pushing up those counts. Worrying does no good. Live as large as you can and be happy in the 'now'. (((Nancy))

nancy591 said:

ca125
Since my recurrence in November 2009 my ca125 and been in normal range for about 1yr with little jumps up and down. Prior to starting the clinical trialin late 2010 I was on Gemzar. My ca125 rose from 43 to 124. We did a scan and decided to start the trial although the scan showed VERY minimal growth. Clinical trial was 8 wks. CA125 was checked at start:124, 4wks:192, 4wks:662. We did a scan and again it showed VERY minimal growth. Onc suggested I stop the trial and move on to Avastin Cytoxan. While on Avas/Cytoxan I rose from 662 to 1640 in 4wks. Then jumped to 3502 2wks later. I had a CT scan done and it did show obvous progression. New areas around my liver but no liver involvement, blood clots leading into the liver. The Abdomen had mixed results, some areas smaller, some larger. Moved to Avastin/taxol starting out at 3502 it jumped to 8798 after 1 cycle of 2wks on 1 wk off. I was scheduled for 3 on 1 off my blood count dropped too low, decided 2on 1 off would work better. Onc wants to try 4 cycles before moving on. I just completed my 2nd cycle and will have a new ca125 drawn at the start of the 3rd cycle. Briefly talked to the onc about other options. Topo will be next. He also said there is no clinical trial out there right now that would be a better option for me then standard treatment. He is only doing CT scans and I am ok with that. "If we can't see it on a CT we are not going to worry about it." I will have a new scan after my 4th cycle.

I found the trial and the cytoxan to be very easy as well. The taxol is making me fatigued but since my liver enzymes have come down I think some of the fatigue has let up.

So, there is my sorry story. Funny thing is my ca125 was 720 when I was diagnosed with a full blown bowel obstruction. My recurrence ca125 was a 10.

nancy591 said:

ca125
Since my recurrence in November 2009 my ca125 and been in normal range for about 1yr with little jumps up and down. Prior to starting the clinical trialin late 2010 I was on Gemzar. My ca125 rose from 43 to 124. We did a scan and decided to start the trial although the scan showed VERY minimal growth. Clinical trial was 8 wks. CA125 was checked at start:124, 4wks:192, 4wks:662. We did a scan and again it showed VERY minimal growth. Onc suggested I stop the trial and move on to Avastin Cytoxan. While on Avas/Cytoxan I rose from 662 to 1640 in 4wks. Then jumped to 3502 2wks later. I had a CT scan done and it did show obvous progression. New areas around my liver but no liver involvement, blood clots leading into the liver. The Abdomen had mixed results, some areas smaller, some larger. Moved to Avastin/taxol starting out at 3502 it jumped to 8798 after 1 cycle of 2wks on 1 wk off. I was scheduled for 3 on 1 off my blood count dropped too low, decided 2on 1 off would work better. Onc wants to try 4 cycles before moving on. I just completed my 2nd cycle and will have a new ca125 drawn at the start of the 3rd cycle. Briefly talked to the onc about other options. Topo will be next. He also said there is no clinical trial out there right now that would be a better option for me then standard treatment. He is only doing CT scans and I am ok with that. "If we can't see it on a CT we are not going to worry about it." I will have a new scan after my 4th cycle.

I found the trial and the cytoxan to be very easy as well. The taxol is making me fatigued but since my liver enzymes have come down I think some of the fatigue has let up.

So, there is my sorry story. Funny thing is my ca125 was 720 when I was diagnosed with a full blown bowel obstruction. My recurrence ca125 was a 10.

nancy591 said:

not so great news
Well I will share my not so great news. I too have/had high hopes for Taxol. Unfortunately after one cycle my ca125 doubled when my labs were drawn last week. I could try to rationalize it by saying my liver enzymes were at an all time high that week. Abdominal inflammation...yadda, yadda, yadda.... My next labs will be drawn again at the start of cycle 3 March 25th. As always, hoping for the best.....