CT's are all clear

kayandok
kayandok Member Posts: 1,202 Member
edited March 2014 in Ovarian Cancer #1
Hi ladies, I am relieved to find out all my CT's are clear (lung, pelvic and bone). My CA125 is still at 132, so obviously, there are tumors lurking. My doc says that if they were to take a PET, they would show up, but he doesn't see any point in doing that unless I plan on doing surgery. I have mixed feelings, I really want to know where they are, but don't really want to take a whole day and pay $300 after the insurance to find out.

I have done 5 cycles of doxil and after the lowering the dosage to 30mg x m2, last cycle I had no side effects at all. I have talked my doc into adding the carboplatin to it, so on Wednesday I will receive my 6th doxil (30 mg x m2) with the carbo (AUC 5). It seems to be a common thing in the US, they have yet to use doxil with another agent here yet. I have done some research and it seems that the trials have only gone to the 2nd phase, although many docs are using it, with success for their patients. I have also received good second opinions from my docs in the US, and carbo was one of several chemo's that they recommended for me.

I am curious to hear from those of you that are/have used doxil/carbo with any success.

Meanwhile, I am counting my blessings today.

Love to all of you,
kathleen:)

Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    clear ct
    I'm so happy for our news in regard to the ct scan. I think I'd have mixed feelings too about the pet scan. Maybe if you are not having symptoms though..why bother? And another thought is that the chemo should hopefully shrink it anyway. Maybe if you knew where the areas were you would obsess on those areas ... that is what I'd probably do!!!
    I have not been offered the doxil/carbo combo. I receive my treatment at sloan kettering and I like to think they are leading the way in cancer care.
    I too (try to) count my blessings daily!
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    great news
    Hi Kathleen, that is awesome news :-) about the ct scan. You know them buggers are pretty microscopic if they aren't showing up. I think everyone I know on doxil has had it as a single agent, will be interesting to watch replies and your results to see how it goes with carbo. Anyway enjoy the Valentine of clear scans. Hugs ♥ Prayers Bonnie
  • This comment has been removed by the Moderator
  • kayandok
    kayandok Member Posts: 1,202 Member
    unknown said:

    This comment has been removed by the Moderator

    PET
    Thanks gals for your response and support!

    I am still torn about the PET, and probably if I were doing more surgery, would do it in a minute. But, according to my Seattle doc and the Japanese one, I have had "adequate surgery". (THat would be 4 in 1 1/2 years, last one being a year ago!) They both agree that if I had an emergency, it would be necessary. I have so many adhesions, that it is very difficult to even open me up. I tend to agree. I do have a couple other docs that might weigh in on the other side, and have yet to contact them. That is another story for another day......

    On the other hand, if my CA goes down to the normal range, I probably will get the PET to determine that I truly am NED. I dream about that day, and do still have hope. Miracles happen everyday!

    Happy Valentine's Day!

    Kathleen:)
  • msfanciful
    msfanciful Member Posts: 559
    kayandok said:

    PET
    Thanks gals for your response and support!

    I am still torn about the PET, and probably if I were doing more surgery, would do it in a minute. But, according to my Seattle doc and the Japanese one, I have had "adequate surgery". (THat would be 4 in 1 1/2 years, last one being a year ago!) They both agree that if I had an emergency, it would be necessary. I have so many adhesions, that it is very difficult to even open me up. I tend to agree. I do have a couple other docs that might weigh in on the other side, and have yet to contact them. That is another story for another day......

    On the other hand, if my CA goes down to the normal range, I probably will get the PET to determine that I truly am NED. I dream about that day, and do still have hope. Miracles happen everyday!

    Happy Valentine's Day!

    Kathleen:)

    Hi kathleen,
    It seems you

    Hi kathleen,

    It seems you had a good valentines day!

    After my cancer recurred for a second time,my oncologist had me do the doxil, carbo and avastin (avastin is a research study drug for women with recurrent ovc).

    The treatment was very intense because of the three meds, but if definitely kept asymptomatic for 6 months. The doxil was my higher dose (about an hour of it), then my carbo was administered (for about 30minutes) and then the avastin for 1 hour.

    I suffered with the gum/mouth sores and hand and foot syndrome with the doxil. (They call doxil "the red devil", because it looks like a red kool-aid drink in the bag). LOL!

    Also, for me when they first administered the doxil, my heart did this funny kind of rapid beating (which scared me). So they stopped it, gave me a few minutes and restarted at a slower flow and everything was fine after that.

    I say every opportunity you have to fight this disease, pleasssse do so. If I had the option to afford the pet-scan I would do it, so I just rely on the cat-scan and pray, pray, pray.

    Sharon
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Hi Kathleen
    I am pleased to hear your CT scans have come back clear. Hope everything works out for you. Love and best wishes tina xxxx
  • MK_4Dani
    MK_4Dani Member Posts: 314
    WOO HOO
    Kathleen,
    So glad to hear good news about your clear CT. WOO HOO HOO!
    Life Is Good, Never Give Up
    MK
  • Lisa Jean
    Lisa Jean Member Posts: 6
    MK_4Dani said:

    WOO HOO
    Kathleen,
    So glad to hear good news about your clear CT. WOO HOO HOO!
    Life Is Good, Never Give Up
    MK

    Hernia
    Hello all I am new to this sight.... In remission 6 months and now dealing with a hernia.. My scats and all cam back negative but my stomach looks like I am 8 months prego..... has anyone had a hernia......
  • Mawty
    Mawty Member Posts: 133
    Carbo/Doxil
    Hi Kathleen,

    That's what I'm on right now for my 1st recurrence. I've only had one infusion, and, I have to say, it was worse for me than the carbo/taxol in one way -- nausea. I don't have the bone pain I had with Taxol, but I was very nauseated for over a week. I have my next infusion next Tuesday, so I haven't gotten too far into it, so I don't have any results to report yet.

    Have you had hand/foot syndrome yet? I haven't yet. But it seems just about everyone gets that.

    Marty
  • Mawty
    Mawty Member Posts: 133
    Lisa Jean said:

    Hernia
    Hello all I am new to this sight.... In remission 6 months and now dealing with a hernia.. My scats and all cam back negative but my stomach looks like I am 8 months prego..... has anyone had a hernia......

    Hernia
    Lisa Jean, I have a very small hernia right where they cut for my surgery. It's very sore to the touch, but there's no bulging or anything. They haven't talked about having to take care of it, so it must be very small. I'm sorry to hear about your hernia. Have they talked about surgery for it? I'm sure you really want more surgery! Not! Let me know how it goes.

    Marty
  • kayandok
    kayandok Member Posts: 1,202 Member
    Mawty said:

    Carbo/Doxil
    Hi Kathleen,

    That's what I'm on right now for my 1st recurrence. I've only had one infusion, and, I have to say, it was worse for me than the carbo/taxol in one way -- nausea. I don't have the bone pain I had with Taxol, but I was very nauseated for over a week. I have my next infusion next Tuesday, so I haven't gotten too far into it, so I don't have any results to report yet.

    Have you had hand/foot syndrome yet? I haven't yet. But it seems just about everyone gets that.

    Marty

    side effects
    So sorry you had all the nausea. I had that with the cisplatin. Not fun at all!

    This is my 6th doxil and first carb/doxil. I did have the hand/foot thing, it crept up me after the 4th infusion. After they lowered the dose, I did ok.

    I had my first carbo/doxil last Wednesday. I've had slight nausea and some tiredness, but my goodness, the neuropathy has sure kicked up a notch. I have had neuorpathy since June after I finished my second line chemo, cisplatin/gemzar. I keep hoping it will get better, but I think my body needs a complete break from all chemo for that to happen.

    Taking it a day at a time,
    kathleen:)
  • nancy591
    nancy591 Member Posts: 1,027 Member
    kayandok said:

    side effects
    So sorry you had all the nausea. I had that with the cisplatin. Not fun at all!

    This is my 6th doxil and first carb/doxil. I did have the hand/foot thing, it crept up me after the 4th infusion. After they lowered the dose, I did ok.

    I had my first carbo/doxil last Wednesday. I've had slight nausea and some tiredness, but my goodness, the neuropathy has sure kicked up a notch. I have had neuorpathy since June after I finished my second line chemo, cisplatin/gemzar. I keep hoping it will get better, but I think my body needs a complete break from all chemo for that to happen.

    Taking it a day at a time,
    kathleen:)

    when did you have your PET
    How many doses did you have before you had your PET? I had 3 doses and have a PET scheduled in 2 weeks. I'm wondering if it is too early for the pet.
  • kayandok
    kayandok Member Posts: 1,202 Member
    nancy591 said:

    when did you have your PET
    How many doses did you have before you had your PET? I had 3 doses and have a PET scheduled in 2 weeks. I'm wondering if it is too early for the pet.

    no PET
    Hi Nancy, I only had a CT (complete bone, pelvic and lung), after my 5th dose. My CA is holding at 132. I have always had PET's in the past, this is the first time I did the CT. I will do a PET in the future, if we need to confirm NED, after the CA comes down. It gets down to the mm range, and will tell you if there is anything there at all. The CT also has a smaller grid, but just isn't as accurate.

    Is your CA in normal range?

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

    no PET
    Hi Nancy, I only had a CT (complete bone, pelvic and lung), after my 5th dose. My CA is holding at 132. I have always had PET's in the past, this is the first time I did the CT. I will do a PET in the future, if we need to confirm NED, after the CA comes down. It gets down to the mm range, and will tell you if there is anything there at all. The CT also has a smaller grid, but just isn't as accurate.

    Is your CA in normal range?

    Kathleen

    ca normal
    prior to starting Doxil I was at 15 then to 30. Now, after my second dose, I am at 23. Well within normal range. My reoccurence though was 13mm. It was picked up on a PET after having a clear ct.
  • saundra
    saundra Member Posts: 1,370 Member
    Carbo+doxil
    That is what I was started on when I came out of remission... It was much harder on me than the carbo+taxol. They dropped the carbo after that and I just got doxil. My neuropathy really kicked in though. I have not had anything since Jan. 6th. My oncologist want to try taxitere (sp) or something like that. I will not have another appointment until Mar. so then I will know. Saundra