huge CA125 rise!!

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  • nancy591
    nancy591 Member Posts: 1,027 Member
    #22
    jloe said:

    Not sure what trail he will suggest
    My gyn/onc is sending me to him to see what trial he thinks would be good for me. My doctor will take a look at the suggestions and decide what would be best for me. Go with a trial or just stay on the garden veriety. I have had almost every combination of chemo via IV & IP (over 40 treatments in 5 years). I am not in remission but considered "stable" since there was no change in the 2 areas from a CT/PET in Aug 2010 and another in Dec 2010. My CA124 is always low so not a very good indicator for me. My doctor does not feel that there is any urgency to remove them and prefers to continue with just chemo for now. Scares the hell of me but I know he knows what he is doing. I have also had a lot of surgery (9) so if he can delay one, it's best for me. I suspect that he will be removing them if there is no change when I do another scan. The waiting between treatments really gets to me but we all go through it. I hope the new round of treatments are easy on you. It seems like you really need a break from all of this. Maybe we'll see each other on the 6th floor one day.

    Joni

    ca125
    Well, it sounds like you've had a good run since you've been fighting 5years now. What stage did you start out at? How long was your longest remission? I'm trying to see if there is a correlation between length of initial remission and overall survival. My ca125 was low when I had little disease. I too thought it was not a good indicator for me as well. I am now thinking it was low because I truly had little disease. When I restarted chemo in January 2010 I had one spot on my colon and my ca125 was a 10. The area was confirmed by biopsy. I've had IP chemo as well.

    I really am feeling good overal and thankful the past year that I've been on chemo has been relatively uneventful. What additional surgeries have you had? My understanding was that additional surgeries were proved to be of no benefit. Unless, of course, you have a bowel obstruction. I want to ask my surgeon about additional surgery when I see her in March. Let us know what the doc says on the 21st. Do you travel far?
  • jloe
    jloe Member Posts: 174
    #23
    nancy591 said:

    ca125
    Well, it sounds like you've had a good run since you've been fighting 5years now. What stage did you start out at? How long was your longest remission? I'm trying to see if there is a correlation between length of initial remission and overall survival. My ca125 was low when I had little disease. I too thought it was not a good indicator for me as well. I am now thinking it was low because I truly had little disease. When I restarted chemo in January 2010 I had one spot on my colon and my ca125 was a 10. The area was confirmed by biopsy. I've had IP chemo as well.

    I really am feeling good overal and thankful the past year that I've been on chemo has been relatively uneventful. What additional surgeries have you had? My understanding was that additional surgeries were proved to be of no benefit. Unless, of course, you have a bowel obstruction. I want to ask my surgeon about additional surgery when I see her in March. Let us know what the doc says on the 21st. Do you travel far?

    I was DX at stage III - CA125 660
    I had the initial debulking followed by 8 rounds of chemo (very toxic) and can't remember the exact combo but it did include a platinum agent and one other. Then I had the CT/PET and it was clear. However, when he followed that with the second look, one tiny biopsy was possitive so I had 6 rounds of IP. I was then in remission for 6 months (1 yr after the initial dx)and then recurrance after that and I have been on chemo both IV & IP since then with tiny little breaks in between. I have had a total of 18 IP treatments and that is a lot considering it can cause so much scaring. The surgeries that I have had were to remove new tumors/nodules, my spleen and bowel surgey (anterior resection, a section of the sigmoid) because one of the tumors was pressing against it but not in it. I was lucky to have that re-attached and not have to have a second one to do that. He did mention to me that true picture for me is the CT/PET because my CA125 has always remained low even ehen there has been recurrance and never has he seen a significant rise so I have them every 4 to 6 months. I live in NYC so I'm lucky to not have to travel. Are you having to travel much? I am kind of excited to hear what he has to say. I never really felt like I needed a second oppinion but this should be interesting.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #24
    jloe said:

    I was DX at stage III - CA125 660
    I had the initial debulking followed by 8 rounds of chemo (very toxic) and can't remember the exact combo but it did include a platinum agent and one other. Then I had the CT/PET and it was clear. However, when he followed that with the second look, one tiny biopsy was possitive so I had 6 rounds of IP. I was then in remission for 6 months (1 yr after the initial dx)and then recurrance after that and I have been on chemo both IV & IP since then with tiny little breaks in between. I have had a total of 18 IP treatments and that is a lot considering it can cause so much scaring. The surgeries that I have had were to remove new tumors/nodules, my spleen and bowel surgey (anterior resection, a section of the sigmoid) because one of the tumors was pressing against it but not in it. I was lucky to have that re-attached and not have to have a second one to do that. He did mention to me that true picture for me is the CT/PET because my CA125 has always remained low even ehen there has been recurrance and never has he seen a significant rise so I have them every 4 to 6 months. I live in NYC so I'm lucky to not have to travel. Are you having to travel much? I am kind of excited to hear what he has to say. I never really felt like I needed a second oppinion but this should be interesting.

    where?
    Where do you go for treatment now? I find your history interesting. I was dx stge 4, ca125 720. My inital surgery left me with an illeostomy. Dr. S's original plan for me was to do 5 rounds of carbo/taxol, illeosotomy reversal, IP x3 rounds. All of that went along as planned. When they reversed the ostomy the 2nd look biopsies were all negative anc ca125 was 7. 8months after completing all treatment, 14 months after diagnosis.

    Your IP chemo was all cisplatinum? They left the IP port in? I was told that IP chemo was usually a one shot deal. With your subsequent chemos you did have regression or stability? I've on chemo for one year straight now with stability or growth.

    My family live in NYC, I grew up there. I live 2hrs NorthWest of NYC.
  • jloe
    jloe Member Posts: 174
    #25
    nancy591 said:

    where?
    Where do you go for treatment now? I find your history interesting. I was dx stge 4, ca125 720. My inital surgery left me with an illeostomy. Dr. S's original plan for me was to do 5 rounds of carbo/taxol, illeosotomy reversal, IP x3 rounds. All of that went along as planned. When they reversed the ostomy the 2nd look biopsies were all negative anc ca125 was 7. 8months after completing all treatment, 14 months after diagnosis.

    Your IP chemo was all cisplatinum? They left the IP port in? I was told that IP chemo was usually a one shot deal. With your subsequent chemos you did have regression or stability? I've on chemo for one year straight now with stability or growth.

    My family live in NYC, I grew up there. I live 2hrs NorthWest of NYC.

    Mount Sinai - 100 & 5th
    Nancy,
    I have a great gyn/onc. His name is Dr. Jamal Rahaman. All of my other doctors really are amazed at what all he has done for me. I was really lucky that he was recommended when I first found out. I think the first 6 IP tratments were cisplatin but I can't remember. They were brutal and very painful because they were so toxic. After the first treatment, he reduced the amount of the saline because I just couldn't handle the volume. The next 12 were a combination of IV & IP but I did not have the pain as I did with the first one. I still have the IP port in but he told me that will not consider any more IP tretments because of the scaring it can/has caused.I don't have a copy of the list of treatments that I sent to Dr. S. and I should have done that. I have always had a combination for almost every treatment. After my first and only remission, I have had several surgeries and alway on some combination of treatment. My last surgery was the bowel surgery and he removed all of the tumor growth in my pelvis. 3 weeks later I had another surgery to remove the lymph node in my chest. My last scan showed it had returned in the same place in my chest and a very small tumor very low in the pelvis but no other new areas. He feels that at this time it is stable and seems to be manageable with chemo. I really have a difficult time understanding this stuff but I get his point. Sorry to ramble on but when I think about this, it has been a very long journey and constant. I am very anxious to hear what Dr. S. has to say about my situation and what he recommends. I hope I get to meet you. Your pictures are beautiful!!!!!!

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