How do you know

catcan
catcan Member Posts: 119
edited March 2014 in Ovarian Cancer #1
I went to the Dr and got my cat-scan results. My fluid around the lungs has cleared but the cancer is still in a few spots and hasn't improved nor is it worse. I do have some cells around the liver but not on or in it. We decided to stay on Doxil for 2-3 more rounds. I just had my fourth round done Wed and called today for my CA 125 results from the 3rd round and found out I went up 125 pts now not sure I made the right decision to stay with Doxil. This is the hardest part how do you ladies know what to do?

Cat

Comments

  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #2
    Hiya Cat
    Your results don't seem that bad. You have cells AROUND the liver not ON IT. This has got to be good news. I too have these cells in spots around my lungs but NOT ON MY LUNGS.

    Regarding making a decision - I always ask my doctor what he would do if it was himself or his wife. Thus I always go with HIS advice because he is the expert and knows what he is talking about.

    Also go with your instinct - that is aalmost always right.

    Take care Tina xx
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    similar circumstance
    I had a biopsy confirmed recurrence on my colon with a ca125 of 10. One spot that was 13mm and did not even show up on the ct scan but lit up on a PET scan. I started on Doxil in early January. My ca125 was at 15 when I had my first infusion. My ca25 went as follows: 15(start), 30, 23, 18. After 3 rounds of Doxil we did another PET/CT. The CT in of itself was fine but the PET showed slightly increased activity. My doctors wantedf to do another 2 or 3 infusions stating that there was a several week delay from confirmed recurrence to when I started chemo. Also stating that doxil can have a delayed response. I was all for it since I was tolerating it well and my recurrence was still very, very small. After 2 additional infusions my ca 1125 jumped from 19 to 32. Another PET/CT now showed 3 small areas on colon and an enlarged abdominal lymph node. We decided to move on to Gemzar/Carbo. I will start Monday. I still have no symptoms. My areas are still small and the doctors feel very managable. Do I feel like I wasted my time? No, I don't. I'm glad we gave Doxil a fighting chance and didn't give up on it so quickly. I believe I would have wondered if we gave up on it too quickly if we moved on after 3 infusions. I know there are only so many options we have and it is important, in my opinion, to really give it a chance. But of course, I had very little disease.

    I would follow the gut instincts of the doctor. Did your ca125 double or just have a big jump? Did they speak to you about what the next treatment regimen would be? Have you tried Avastin yet? My GYN onc told me there is a cance convention in early June and it is expected they will speak on the Avastin trials. If the avastin proves to be successful they will be adding it to my new regimen.

    GOOD LUCK with your decision. I look at it this way. 3 or 4 weeks is not going to make a huge difference in the grand scheme of things. I delayed starting the carbo/gem because my kids had events at school I wanted to attend.
  • catcan
    catcan Member Posts: 119
    #4
    nancy591 said:

    similar circumstance
    I had a biopsy confirmed recurrence on my colon with a ca125 of 10. One spot that was 13mm and did not even show up on the ct scan but lit up on a PET scan. I started on Doxil in early January. My ca125 was at 15 when I had my first infusion. My ca25 went as follows: 15(start), 30, 23, 18. After 3 rounds of Doxil we did another PET/CT. The CT in of itself was fine but the PET showed slightly increased activity. My doctors wantedf to do another 2 or 3 infusions stating that there was a several week delay from confirmed recurrence to when I started chemo. Also stating that doxil can have a delayed response. I was all for it since I was tolerating it well and my recurrence was still very, very small. After 2 additional infusions my ca 1125 jumped from 19 to 32. Another PET/CT now showed 3 small areas on colon and an enlarged abdominal lymph node. We decided to move on to Gemzar/Carbo. I will start Monday. I still have no symptoms. My areas are still small and the doctors feel very managable. Do I feel like I wasted my time? No, I don't. I'm glad we gave Doxil a fighting chance and didn't give up on it so quickly. I believe I would have wondered if we gave up on it too quickly if we moved on after 3 infusions. I know there are only so many options we have and it is important, in my opinion, to really give it a chance. But of course, I had very little disease.

    I would follow the gut instincts of the doctor. Did your ca125 double or just have a big jump? Did they speak to you about what the next treatment regimen would be? Have you tried Avastin yet? My GYN onc told me there is a cance convention in early June and it is expected they will speak on the Avastin trials. If the avastin proves to be successful they will be adding it to my new regimen.

    GOOD LUCK with your decision. I look at it this way. 3 or 4 weeks is not going to make a huge difference in the grand scheme of things. I delayed starting the carbo/gem because my kids had events at school I wanted to attend.

    thanks
    Nancy

    Thanks for sharing. My ca 125 jumped 125 pts. I agree we need to give these chemo's a chance to work. I also have heard about Avastin and hear it is expensive. My oncologist did suggest it if the insurance company approves it otherwise I think Gemzar is my next move. I am going to give it 2 more times to see what happens and hope for the best
  • catcan
    catcan Member Posts: 119
    #5
    Tina Brown said:

    Hiya Cat
    Your results don't seem that bad. You have cells AROUND the liver not ON IT. This has got to be good news. I too have these cells in spots around my lungs but NOT ON MY LUNGS.

    Regarding making a decision - I always ask my doctor what he would do if it was himself or his wife. Thus I always go with HIS advice because he is the expert and knows what he is talking about.

    Also go with your instinct - that is aalmost always right.

    Take care Tina xx

    Hi Tina
    Boy you are either up late or up early! Thanks for responding with good advice. My instincts tell me to give it a couple more rounds, and my Dr thinks that's the way to go so I will. I guess it's the cup half full or half empy and i'm going to go with full.

    Thanks for being there

    Cat
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #6
    catcan said:

    Hi Tina
    Boy you are either up late or up early! Thanks for responding with good advice. My instincts tell me to give it a couple more rounds, and my Dr thinks that's the way to go so I will. I guess it's the cup half full or half empy and i'm going to go with full.

    Thanks for being there

    Cat

    Hi Cat
    I live in the UK so the time difference looks like I am on the computer at weird times. I actually posted my psot at 4:56pm yesterday :)

    Hope everything goes alright from you lots love Tina
  • msfanciful
    msfanciful Member Posts: 559
    #7
    Hi,
    I usually use as a
    Hi,

    I usually use as a rule... "if it isn't working don't waste any unnecessary time with it."

    My oncologist shares my same sentiments.

    After almost 2-months of an oral chemo called "etopocide" did not work... my numbers actually jumped from a 27 to 63 in that time. She didn't like that and took me off of the etopocide right away.

    I have since had 7 weekly infusions of taxol and my numbers have now dropped back to 36 from 63! ! !

    Also as Tina said, Always go with your initial gut-instinct.

    Take care,

    Sharon

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