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  • nancy591
    nancy591 Member Posts: 1,027 Member
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    Intraperitoneal (IP) Chemotherapy for Ovarian/recurrence
    how is this for quick turnaround time reply to your answer. Now you see why your DR did not use IP. July 2008

    What about Intraperitoneal Chemo for those with RECURRENCE of ovarian cancer after initial treatment? In a review of salvage therapy for ovarian cancer, Intraperitoneal (IP) therapy with platinum was recommended as second-line therapy for patients with platinum-sensitive relapsed ovarian cancer. However, the basis for this preference is not clear. At present, there seems to be little role for IP chemotherapy in the management of patients with platinum-resistant disease or patients with residual tumors of any size (especially larger than 2 cm

    National Cancer Institute suggests that IP chemotherapy be strongly considered for women with small volume residual tumor after maximal surgical resection for stage III disease. A thorough discussion with the patient about the potential benefits and toxicities associated with such an approach is mandatory. At least for the present, a standard intravenous regimen of paclitaxel plus carboplatin is an acceptable alternative to IP therapy for these patients because of the toxicity issues. Ongoing studies will seek to identify effective yet more tolerable IP regimens for further study in subsequent phase III trials. AGAIN: Women with optimally reduced stage III ovarian cancer and a good performance status should at least be counseled regarding this potentially superior option of therapy

    http://www.dailystrength.org/experts/dr-orrange/article/intraperitoneal-ip-chemotherapy-for-ovarian-cancer

    Froggy,
    IP chemo is NOT

    Froggy,

    IP chemo is NOT recommended for women with recurrent ovca if they are platinum resistant. That is, to my knowledge, had recurrence in 6 months or less. 6 month to 1 year is boarderline resistance.

    Also states IP chemo be strongly considered for stage III if you had an optimal debulking. Risks should be reviewed with the women. An alternative to IP chemo is standard IV carbo/taxol.

    There are ongoing studies to find effective but more tolerated IP regimens.
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    I read/post on Inspire, too
    I read/post on Inspire, too and I know Helen's story is truly one of inspiration and hope. I think, like Helen, that the key is aggressive treatment. I am still upset that my doctor would not give me IP chemo. Do they ever use IP treatments for a recurrence?

    Carlene

    I did ask my surgeon if more rounds of IP would be an option for me. She said no it was usually a one shot deal. Is that because I had a confirmed recurrence within 7-8 months? I don't really know. She did tell me if I had made it one year without a recurrence I would be back on carbo/taxol. Like I had said previously, I do believe if my surgeon did not push for the PET/CT I probably would have went undetected for 1yr. The CT portion alone of the scan, at that time, showed nothing.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    nancy591 said:

    I did ask my surgeon if more rounds of IP would be an option for me. She said no it was usually a one shot deal. Is that because I had a confirmed recurrence within 7-8 months? I don't really know. She did tell me if I had made it one year without a recurrence I would be back on carbo/taxol. Like I had said previously, I do believe if my surgeon did not push for the PET/CT I probably would have went undetected for 1yr. The CT portion alone of the scan, at that time, showed nothing.

    Nancy....did you have the
    Nancy....did you have the option of doing Taxol maintenance? My doctor says he has had better results with it than what the studies indicate, so he gives some of his patients the option. Obviously not if you had significant neuropathy with the carbo/taxol protocol. I opted for it because it might push back a recurrence, and as you said, if you can make it past a year, your treatment options are better.

    I agree with you on the PT scan. I think a lot of us are blissfully thinking we are dancing with NED, when if fact, it's an imposter. I think a lot of us are not really in remission because the CT scans just don't pick up the little stuff. When they say that 85% of us have a total remission after first line chemo, they mean a remission as defined by a "clean" CT scan and a normal CA 125. Not cause, in my book, for fireworks and champagne.

    Carlene
  • Nancy....did you have the
    Nancy....did you have the option of doing Taxol maintenance? My doctor says he has had better results with it than what the studies indicate, so he gives some of his patients the option. Obviously not if you had significant neuropathy with the carbo/taxol protocol. I opted for it because it might push back a recurrence, and as you said, if you can make it past a year, your treatment options are better.

    I agree with you on the PT scan. I think a lot of us are blissfully thinking we are dancing with NED, when if fact, it's an imposter. I think a lot of us are not really in remission because the CT scans just don't pick up the little stuff. When they say that 85% of us have a total remission after first line chemo, they mean a remission as defined by a "clean" CT scan and a normal CA 125. Not cause, in my book, for fireworks and champagne.

    Carlene

    This comment has been removed by the Moderator
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
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    Nancy....did you have the
    Nancy....did you have the option of doing Taxol maintenance? My doctor says he has had better results with it than what the studies indicate, so he gives some of his patients the option. Obviously not if you had significant neuropathy with the carbo/taxol protocol. I opted for it because it might push back a recurrence, and as you said, if you can make it past a year, your treatment options are better.

    I agree with you on the PT scan. I think a lot of us are blissfully thinking we are dancing with NED, when if fact, it's an imposter. I think a lot of us are not really in remission because the CT scans just don't pick up the little stuff. When they say that 85% of us have a total remission after first line chemo, they mean a remission as defined by a "clean" CT scan and a normal CA 125. Not cause, in my book, for fireworks and champagne.

    Carlene

    i feel like im a ghost in
    i feel like im a ghost in these discussions. I know im not an ovarian cancer survivor (male) but I was caregiver for an late stage ovarian cancer patient previously who had been a good friend. It just feels awkward I guess.
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    Nancy....did you have the
    Nancy....did you have the option of doing Taxol maintenance? My doctor says he has had better results with it than what the studies indicate, so he gives some of his patients the option. Obviously not if you had significant neuropathy with the carbo/taxol protocol. I opted for it because it might push back a recurrence, and as you said, if you can make it past a year, your treatment options are better.

    I agree with you on the PT scan. I think a lot of us are blissfully thinking we are dancing with NED, when if fact, it's an imposter. I think a lot of us are not really in remission because the CT scans just don't pick up the little stuff. When they say that 85% of us have a total remission after first line chemo, they mean a remission as defined by a "clean" CT scan and a normal CA 125. Not cause, in my book, for fireworks and champagne.

    Carlene

    no option
    It was never discussed with me. When I completed my treatment in April '09 I was not on this board yet so I didn't know about it. I do remember asking my surgeon and my onc if there is anything I can do to prolong my staying in remission. Both of them had no answer for me 'everything in moderation' one said, the other said 'it's in God's hands'. I did ask about supplemental treatments, IV therapy, etc. Both agreed there was no evidence it helped. Later on, after being on this board and before my recurrence, I did ask my onc about maintenance therapy. She said something along the lines of 'there is no evidence it works and all it will do is lead to neuropathy'. I do take comfort in knowing Taxol is a treatment option for me in the future if my current regimen does not work.

    I agree with you 100% about a true recurrence. Like you, I need to know detail. I remember specifically when my surgeon told me '80% of people respond to initial treatment'. I thought later on, if 80% respond well why does it have a high mortality rate. I knew the answer. Here I thought I was a walking miracle when in reality I was in that 80%. That was a sobering day. Just like I know now, if this current regimen doesn't work, I'll be running out of options. BUT I am optimistic. Carbo worked before, hopefully it can help me now.
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    i feel like im a ghost in
    i feel like im a ghost in these discussions. I know im not an ovarian cancer survivor (male) but I was caregiver for an late stage ovarian cancer patient previously who had been a good friend. It just feels awkward I guess.

    valuable
    Your input, opinions, caring words and useful information is always welcomed. I am suprised you feel the need to stick around. What draws you here?
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    unknown said:

    This comment has been removed by the Moderator

    nice to see you
    Nice to see you. I should really update my pic. It is from Feb'10. My hair has grown some since that pic. That is my hair in the pic.

    I do agree with giving the body a rest. When I finished my treatments 5 IV carbo/taxol, illeostomy reversal, 3 IP cisplat/taxol I was wiped. I didn't think I could go on. When I had my recurrence, I was very for battle again.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
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    nancy591 said:

    no option
    It was never discussed with me. When I completed my treatment in April '09 I was not on this board yet so I didn't know about it. I do remember asking my surgeon and my onc if there is anything I can do to prolong my staying in remission. Both of them had no answer for me 'everything in moderation' one said, the other said 'it's in God's hands'. I did ask about supplemental treatments, IV therapy, etc. Both agreed there was no evidence it helped. Later on, after being on this board and before my recurrence, I did ask my onc about maintenance therapy. She said something along the lines of 'there is no evidence it works and all it will do is lead to neuropathy'. I do take comfort in knowing Taxol is a treatment option for me in the future if my current regimen does not work.

    I agree with you 100% about a true recurrence. Like you, I need to know detail. I remember specifically when my surgeon told me '80% of people respond to initial treatment'. I thought later on, if 80% respond well why does it have a high mortality rate. I knew the answer. Here I thought I was a walking miracle when in reality I was in that 80%. That was a sobering day. Just like I know now, if this current regimen doesn't work, I'll be running out of options. BUT I am optimistic. Carbo worked before, hopefully it can help me now.

    No EVIDENCE of Disease means just that, no evidence,...YET.
    I remember initially hating the term 'Remission' because it sounds so much like 'Intermission',...i.e., the intermission between recurrences. I had the same reaction initially to the term 'No Evidence of Disease'; I hated that it sounds so wishy-washy, like they still believe the disease is there but they just can't find it at this time. In the beginning of this cancer journey, I wanted those terms to mean so much more.

    But now that I'm more familiar with the process (MUCH more familiar than I want to be), I can see how appropriate those terms are, unsatisfying as they are. And even though they don't mean 'CURED', "remission" and "NED" are still THRILLING to hear and I live to hear them once again attrbuted to me.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
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    nancy591 said:

    no option
    It was never discussed with me. When I completed my treatment in April '09 I was not on this board yet so I didn't know about it. I do remember asking my surgeon and my onc if there is anything I can do to prolong my staying in remission. Both of them had no answer for me 'everything in moderation' one said, the other said 'it's in God's hands'. I did ask about supplemental treatments, IV therapy, etc. Both agreed there was no evidence it helped. Later on, after being on this board and before my recurrence, I did ask my onc about maintenance therapy. She said something along the lines of 'there is no evidence it works and all it will do is lead to neuropathy'. I do take comfort in knowing Taxol is a treatment option for me in the future if my current regimen does not work.

    I agree with you 100% about a true recurrence. Like you, I need to know detail. I remember specifically when my surgeon told me '80% of people respond to initial treatment'. I thought later on, if 80% respond well why does it have a high mortality rate. I knew the answer. Here I thought I was a walking miracle when in reality I was in that 80%. That was a sobering day. Just like I know now, if this current regimen doesn't work, I'll be running out of options. BUT I am optimistic. Carbo worked before, hopefully it can help me now.

    I guess I am lucky in one
    I guess I am lucky in one respect: I don't have neuropathy issues, even after 6 rounds of carbo/taxol and the first 3 taxol only infusions. And I am apparantly responsive to the platinum drugs, as Carbo/Taxol protocol brought my CA 125 down from 2200 (immediately post-surgery) to 6.

    I will always remember my doctor's associate, who said that to beat ovarian cancer, you need a strong stomach and a lot of luck. At the time I was suffering with a bowel obstruction, then a totally non-responsive gut after surgery, so I definitely did not have a "strong stomach" at that point. Nothing would stop the vomiting. I thought well....in that case, there is no hope for me. Now I just think what a moron that guy was. And insensitive, at that.

    Carlene
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
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    I guess I am lucky in one
    I guess I am lucky in one respect: I don't have neuropathy issues, even after 6 rounds of carbo/taxol and the first 3 taxol only infusions. And I am apparantly responsive to the platinum drugs, as Carbo/Taxol protocol brought my CA 125 down from 2200 (immediately post-surgery) to 6.

    I will always remember my doctor's associate, who said that to beat ovarian cancer, you need a strong stomach and a lot of luck. At the time I was suffering with a bowel obstruction, then a totally non-responsive gut after surgery, so I definitely did not have a "strong stomach" at that point. Nothing would stop the vomiting. I thought well....in that case, there is no hope for me. Now I just think what a moron that guy was. And insensitive, at that.

    Carlene

    I, too, have been so lucky not to have neuropathy!
    I have also been so lucky not to have neuropathy after the 6 carbo/taxols and 10 additional dense-dose taxols. I had a little bit of it in 3 toes midway through my initial treatment protocol, but it went away by the 5th round and never came back,...at least not yet. I'll bet you stay neuropathy-free, Charlene.

    Carbo/taxol has worked really good for me, too, and I think later this month that I'll be starting a WEEKLY fractionated carbo/taxol regime for this latest new recurrence. I am anxious now to get my assays and blood work back and find out what my oncologists recommend. I loved ('LOVED' is an understatement!!!) my 4-month chemo break; and I must admit that I am quite attached to my little crewcut of new fuzzy chemo curls,... but now that the recurrence is verified, I'm getting myself in battle mode once again.

    Honestly, I feel so healthy and really wonderful. I never had any symtoms before my diagnosis or before either of my 2 recurrences. It's so crazy to feel this good when you know, based on tests, that cancer is active inside you. Please let it always be this way,..for all of us.
  • leesag
    leesag Member Posts: 621 Member
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    Nancy....did you have the
    Nancy....did you have the option of doing Taxol maintenance? My doctor says he has had better results with it than what the studies indicate, so he gives some of his patients the option. Obviously not if you had significant neuropathy with the carbo/taxol protocol. I opted for it because it might push back a recurrence, and as you said, if you can make it past a year, your treatment options are better.

    I agree with you on the PT scan. I think a lot of us are blissfully thinking we are dancing with NED, when if fact, it's an imposter. I think a lot of us are not really in remission because the CT scans just don't pick up the little stuff. When they say that 85% of us have a total remission after first line chemo, they mean a remission as defined by a "clean" CT scan and a normal CA 125. Not cause, in my book, for fireworks and champagne.

    Carlene

    Pet vs. CT
    I asked my doctor about Pet scans vs. Cat Scans. She indicated to me that the standard protocol is to use CT scans to monitor and then include an annual PT scan for diagnostic purposes. During our conversation, it seemed to me that she was saying that my cancer shows up better on CT than on Pet, and it's easier to compare CT scans.

    I'm not sure what all of that means, and I sometimes I feel as though I'm leaving myself woefully in the dark, but, on the other hand, from all of my readings, I'm not so sure that the CT scan detecting it a bit later than the PT scan, makes any difference in the outcome.

    I see my Gyn/Onc on Wednesday and I'll probably ask him the same question.

    I just want a break from worrying and second guessing myself and my docs. :(
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    I guess I am lucky in one
    I guess I am lucky in one respect: I don't have neuropathy issues, even after 6 rounds of carbo/taxol and the first 3 taxol only infusions. And I am apparantly responsive to the platinum drugs, as Carbo/Taxol protocol brought my CA 125 down from 2200 (immediately post-surgery) to 6.

    I will always remember my doctor's associate, who said that to beat ovarian cancer, you need a strong stomach and a lot of luck. At the time I was suffering with a bowel obstruction, then a totally non-responsive gut after surgery, so I definitely did not have a "strong stomach" at that point. Nothing would stop the vomiting. I thought well....in that case, there is no hope for me. Now I just think what a moron that guy was. And insensitive, at that.

    Carlene

    neuropathy
    I had no neuropathy after 8 infusions of taxol.

    I dont' think the ca125 drop determines whether you are sensitive or resistant to platinum. It is the duration of time you stay NED after treatment that determines this. My ca125 dropped to 7 from 720 at the completion of my treatment.
  • kayandok
    kayandok Member Posts: 1,202 Member
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    nancy591 said:

    neuropathy
    I had no neuropathy after 8 infusions of taxol.

    I dont' think the ca125 drop determines whether you are sensitive or resistant to platinum. It is the duration of time you stay NED after treatment that determines this. My ca125 dropped to 7 from 720 at the completion of my treatment.

    Platinum resistant
    My doctor told me the same thing, Nancy. You are considered resistant if you recur before 6 months after your last chemo is finished. But, it can be a bit tricky to calculate. I finished my first treatment (8 carbo/taxol) in April 08. My recurrence was confirmed in November 08 with a PET and CA125. But, the numbers had already been creeping up, although were still in the normal range. All of my doctors say I am not resistant, but I'm sure I could be border line. I did have cisplatin (with gemzar) for my second line chemo after a second debulk, and the CA125 only got down to 18. (My low had always been between 5 and 7) It is all such an art.....

    I have had a lot of chemo, 26 courses I think.... and really do feel pretty good, except for the neuropathy thing that slows me down. And that really didn't kick in until last summer, after cisplatin was all finished. Very strange, really, but that is what cisplatin does, I guess.

    Great thread, Carline!!!
  • kayandok
    kayandok Member Posts: 1,202 Member
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    leesag said:

    Pet vs. CT
    I asked my doctor about Pet scans vs. Cat Scans. She indicated to me that the standard protocol is to use CT scans to monitor and then include an annual PT scan for diagnostic purposes. During our conversation, it seemed to me that she was saying that my cancer shows up better on CT than on Pet, and it's easier to compare CT scans.

    I'm not sure what all of that means, and I sometimes I feel as though I'm leaving myself woefully in the dark, but, on the other hand, from all of my readings, I'm not so sure that the CT scan detecting it a bit later than the PT scan, makes any difference in the outcome.

    I see my Gyn/Onc on Wednesday and I'll probably ask him the same question.

    I just want a break from worrying and second guessing myself and my docs. :(

    Yep!
    I think you nailed it, Leesa. My Japanese doc told me there is no need for a PET, unless you are planning to do surgery and/or chemo, and treat aggressively the minute it shows up. "And if you go by the STATISTICS", he always says, (I'm sorry, I hate this word when you combine it with cancer) "there is no difference in your life span if you treat immediately when cancer shows up, or wait a bit and then treat. So, the CT works just fine for that philosophy."

    My docs that I consult with in the US, two of them always say, "Get the PET, if you can!" and the other says, "If you have one that is great, but a CT will be fine." I assume they have to work with whatever the insurance co will cover too, so that is another aspect of this....

    That being said, I always tell my Japanese doctor, at every juncture, "Well I may be going back to the US, for more surgery." (which is actually true) and he says ok to a PET. I can't help myself, I just want to know what is there on a microscopic level. So, that is why I have had 4 PETs. I am in such a unique category, living in Japan and combining both US and Japan for treatment, that you really can't use me for an example, but just sharing my perspective.

    I know, I know waaay TMI!!!!
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    kayandok said:

    Platinum resistant
    My doctor told me the same thing, Nancy. You are considered resistant if you recur before 6 months after your last chemo is finished. But, it can be a bit tricky to calculate. I finished my first treatment (8 carbo/taxol) in April 08. My recurrence was confirmed in November 08 with a PET and CA125. But, the numbers had already been creeping up, although were still in the normal range. All of my doctors say I am not resistant, but I'm sure I could be border line. I did have cisplatin (with gemzar) for my second line chemo after a second debulk, and the CA125 only got down to 18. (My low had always been between 5 and 7) It is all such an art.....

    I have had a lot of chemo, 26 courses I think.... and really do feel pretty good, except for the neuropathy thing that slows me down. And that really didn't kick in until last summer, after cisplatin was all finished. Very strange, really, but that is what cisplatin does, I guess.

    Great thread, Carline!!!

    same here
    I also wanted to add that when I finished my 5 cycles of carbo/taxol they reversed my illeostomy and put in the IP port. At the time of the reversal they did a 'second look' and biopsied tissue around the colon area. All the biposies came back normal. No evidence of disease. I then continued on to get an additional 3 cycles of IP cisplat/taxol. Like I said, I thought I was a walking miracle but in reality I was in the 80-85%.

    My situation was similar to yours. One month out of treatment, May '09, my ending ca125 was at 7. Two months later, July '09, it was 9. Two months after that, Sept.09, it was 12, two months later, Nov. 09, it was 10. In November '09 I had PET/CT show one hypermetabolic area measuring 13mm. In Dec '09 a colonoscopy confirmed it to be recurrent ovarian. I started Doxil Jan of this year. Since my confirmed recurrence the highest my ca125 has gotten is 32 in April. My latest ca125, last month while still on Doxil, was 28. Clearly not a good indicator for me anymore as my latest PET/CT in May showed 3 hypermetabolic areas on my colon and one abdominal lymph node.
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    kayandok said:

    Yep!
    I think you nailed it, Leesa. My Japanese doc told me there is no need for a PET, unless you are planning to do surgery and/or chemo, and treat aggressively the minute it shows up. "And if you go by the STATISTICS", he always says, (I'm sorry, I hate this word when you combine it with cancer) "there is no difference in your life span if you treat immediately when cancer shows up, or wait a bit and then treat. So, the CT works just fine for that philosophy."

    My docs that I consult with in the US, two of them always say, "Get the PET, if you can!" and the other says, "If you have one that is great, but a CT will be fine." I assume they have to work with whatever the insurance co will cover too, so that is another aspect of this....

    That being said, I always tell my Japanese doctor, at every juncture, "Well I may be going back to the US, for more surgery." (which is actually true) and he says ok to a PET. I can't help myself, I just want to know what is there on a microscopic level. So, that is why I have had 4 PETs. I am in such a unique category, living in Japan and combining both US and Japan for treatment, that you really can't use me for an example, but just sharing my perspective.

    I know, I know waaay TMI!!!!

    not to much information
    Not to much information in my opinion!! I find it interesting to read other stories and experiences. Sometimes I forget everyone's status/history and helps to get a quick update.

    For me, I had to know. Now, I must admit, I'd like to keep my head in the sand for a little while.
  • kayandok
    kayandok Member Posts: 1,202 Member
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    nancy591 said:

    not to much information
    Not to much information in my opinion!! I find it interesting to read other stories and experiences. Sometimes I forget everyone's status/history and helps to get a quick update.

    For me, I had to know. Now, I must admit, I'd like to keep my head in the sand for a little while.

    You are up early!!
    If I am calculating right!
    k:)
  • kayandok
    kayandok Member Posts: 1,202 Member
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    kayandok said:

    Yep!
    I think you nailed it, Leesa. My Japanese doc told me there is no need for a PET, unless you are planning to do surgery and/or chemo, and treat aggressively the minute it shows up. "And if you go by the STATISTICS", he always says, (I'm sorry, I hate this word when you combine it with cancer) "there is no difference in your life span if you treat immediately when cancer shows up, or wait a bit and then treat. So, the CT works just fine for that philosophy."

    My docs that I consult with in the US, two of them always say, "Get the PET, if you can!" and the other says, "If you have one that is great, but a CT will be fine." I assume they have to work with whatever the insurance co will cover too, so that is another aspect of this....

    That being said, I always tell my Japanese doctor, at every juncture, "Well I may be going back to the US, for more surgery." (which is actually true) and he says ok to a PET. I can't help myself, I just want to know what is there on a microscopic level. So, that is why I have had 4 PETs. I am in such a unique category, living in Japan and combining both US and Japan for treatment, that you really can't use me for an example, but just sharing my perspective.

    I know, I know waaay TMI!!!!

    Also,
    wanted to mention, that there are different grids on the CT, which some people don't seem to realize. The doctors seem to each have their favorite "grid size" and like to compare that each time to watch the tumor's change. And there are CT scans that do detect down to mm size in the big hospitals. The PET and CT are slightly different technology, and I can't explain that to you, but I have heard other docs also say that they think the OvCa shows up better on the CT. I have always wondered if it is just personal philosophy issues and preference on treatment timing that they are referring to.

    k
  • nancy591
    nancy591 Member Posts: 1,027 Member
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    kayandok said:

    You are up early!!
    If I am calculating right!
    k:)

    morning coffee
    I usually wake up between 6a-7a. Getting the kids up for school etc. This early morning time I like to sit down with a cup of coffee and go online. Its the only quiet time I get before the 'morning rush'