Hi Nancy591 - how are you doing

antcat
antcat Member Posts: 270
Hi Nancy, I was just wondering how you're doing. Hope all is going well for you.

P.S. Decided to try to plan a trip this year to Disney and take my nephew. He wants to stay at either the Beach Club or Grand Floridian. He has kind of expensive taste, but loves the themed pools and I'm not sure when I'll be going again.

Again, I hope you are doing ok and as always think of you and wish you the best.

AntCat

Comments

  • Christine B.
    Christine B. Member Posts: 137
    Echo from Christine
    Nancy, You have been on my mind and in my prayers. Wishing you the very best also.
    Christine
  • nancy591
    nancy591 Member Posts: 1,027 Member
    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
    anicca Member Posts: 334 Member
    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.

    Your liver enzymes coming
    Your liver enzymes coming down IS good news!
  • nancy591
    nancy591 Member Posts: 1,027 Member
    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.

    Disney
    I was thinking about Disney. I think it is the Disney yacht club that has great food. The Disney Beach Club has the buffet that is decent.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    anicca said:

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

    I, too, have been thinking about you, Nancy.
    Please know that you can always share anything here, good or bad. I know how you feel; I quickly posted when the 1st avastin/cytomin dropped my CA125 200 points, but didn't post that the 2nd only dropped it 20 points, so I'm still up over 1200. Or that my platelets have dropped enough that my cytoxins been cut back to 5 days a week instead of 7, since they want to see if we can get the platelets back up. Because I'm battling as hard as my body allows me to; and Nancy, I know that you are doing the same. That's all we can do, and I find some peace in knowing I'm doing all I can and so there's no use worrying. And all we both really need is something that holds us stable where we are.

    But I still have high hopes for the taxol for you, with or without avastin, as twice taxol brought me into remission (the only thing that did). I still am hoping you're on your way there and get a complete break from all of this.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    anicca said:

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

    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.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    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.....
  • nancy591
    nancy591 Member Posts: 1,027 Member

    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.

    beets
    Ugh, I don't know if I could stomach beets. At least they know what the cause of my liver problem is. It is the blood clots in the vessels. It looks like the blood thinner is working as my enzymes dropped significantly.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    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.....

    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
    nancy591 Member Posts: 1,027 Member

    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))

    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.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    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.

    (((Nancy))). But do you still FEEL good?
    We are running such parallel paths that I winced reading your 'sorry story.' I know what you mean about CA125; my initial pre-chemo CA125 way back in fall of 2008 was 190. My low was 11. My 1st recurrence CA125 was 125. It's all relative I guess. Now it's 1200+, not sure of the exact number, and I try not to really care. As long as I FEEL good, I hang on to that. So I hope that you are feeling good and symptom-free.

    Your cytoxin/avastin jump is scary to me as that is my current chemo. I am on one-week-on/one-week-off with the avastin, and cytoxin 50 mg/day for 5 days, then 2 days off. And I want to STAY on this schedule so bad. I know I'll have trouble with my platelets on gemzar; and bet that topotecan is next for me too, as those are the only 2 that have been mentioned that we haven't tried yet.

    Sorry the taxol is allowing your CA125 to jump up ike that and I'm hoping it's still working and just a reaction to something else. I've heard that avastin can really cause crazy number swings unrelated to cancer progression in some people, no studies I could find, but posts from others on Avastin. Taxol made me fatigued, but when it worked I sure loved it.
  • Rookerbird
    Rookerbird Member Posts: 100
    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.

    ...
    Don't really know what to say. You're in my prayers, Nancy.
  • childofthestars
    childofthestars Member Posts: 251 Member

    ...
    Don't really know what to say. You're in my prayers, Nancy.

    Thinking of you
    Hi Nancy
    I'm with Rookerbird on this ............
    Don't know what to say but thinking of you and sending you lots of positive thoughts.
    Michelle x
  • srwruns
    srwruns Member Posts: 343
    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.

    Ouch. Keep looking for the
    Ouch. Keep looking for the right cocktail!
  • kikz
    kikz Member Posts: 1,345 Member
    srwruns said:

    Ouch. Keep looking for the
    Ouch. Keep looking for the right cocktail!

    Keep up the fight
    which I know you will. I will hold good thoughts for you.

    Karen
  • kayandok
    kayandok Member Posts: 1,202 Member
    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.....

    Nancy,
    this is rotten news! How do you feel? You are such a trooper, and always seem so calm about all ths, but I know you are going through the ringer. Am sending you a FB mail shortly.
    Love you,
    kathleen
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    kayandok said:

    Nancy,
    this is rotten news! How do you feel? You are such a trooper, and always seem so calm about all ths, but I know you are going through the ringer. Am sending you a FB mail shortly.
    Love you,
    kathleen

    Nancy
    I also have been thinking about you and I am sorry your labs are off. I am sure they will come down. Keep us posted if only to say howdy
  • Mwee
    Mwee Member Posts: 1,338
    Dear Nancy
    What a rollercoaster you've been riding. You're counts seem out of whack with how you're feeling. CA-125's don't seem very accurate for me. My counts seem low for the progression that the CT scans show. You are in my thoughts... hang tough.
    (((HUGS))) Maria
  • azgrandma
    azgrandma Member Posts: 609 Member
    Mwee said:

    Dear Nancy
    What a rollercoaster you've been riding. You're counts seem out of whack with how you're feeling. CA-125's don't seem very accurate for me. My counts seem low for the progression that the CT scans show. You are in my thoughts... hang tough.
    (((HUGS))) Maria

    Thinking of you
    I am thinking of you and saying a prayer