maintenance chemo from a Newbie

froggy1
froggy1 Member Posts: 205
edited March 2014 in Ovarian Cancer #1
Hello Dear Ladies,
I'm a lurker coming out of my hole! I have so enjoyed this board and all your insight.
The Short Story- 'diagnosed 09/03/08, surgery right away, 3c, 8 rounds of Carbo/taxotere.
My last PET scan showed NED, CA125 baseline is 9, last one was 6, for whatever that's worth in this mystery!.
THE PROBLEM- I decided to go on a maintenance Paclitaxel and it's kicking my butt. I was told this would be a piece of cake. I'm having bad facial swelling, nausea, fatigue etc. They are thinking I might be having an allergic reaction to it.
I have a Doc. consult next week to regroup. I know the maintenance thing is controversial.
I would love to have an insight anybody could offer.
Ginny, the frog lover

Comments

  • green50
    green50 Member Posts: 312
    #2
    We Care
    I don't know but after my surgery and chemo the first time taxol/carbo platnum 6 rounds. I didnt take chemo again for 17 months. I don't take chemo unless over a 100 but even at 18000 my tumors are small so I am learning that small counts don't always mean small tumors and large counts don't always mean large tumors or many, confusing to me even after 7 years. Chemo can make you very weak and sick, as far as the swelling I would think that would mean allergic to. Maybe your Dr will come up with something else if you continue the maintenance. I know some take pills that stablizes counts as breast patients do, such as Tamoxafren. But there are side effects to it also so not sure. I hope you won't have to take anything that makes you sick. Let us know what is decided. We all care.
    Prayers and Hugs
    Sandy
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Maintenance Taxol
    I did 11 of 12 maintenance doses of taxol after the surgery and 9 doses of full strength taxol/carbo
    The dose was lowered to 135/ml and I did have to take benedryl when I got home. Gradually developed a rash on face and trunk. We stopped at 11 because it became noneffective and my CA125 started to rise.
    Benedryl over the counter handled my rash and I did have some nausea a couple of days on about three of the treatments. Anti nausea corrected that. Saundra the box turtle lover...
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #5
    Hugs
    Hi Ginny, Congratulations on your fantastic ca125. As you can see maintenance chemo will bring you all sorts of answers. I know even Drs don't agree on whether it should or shouldn't be part of the battle. Sorry to hear it is also kicking your butt. Prayers N Hugs Bonnie

    Post an update when you see your dr.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
    Hi Ginny
    Awesome numbers! I would die to get back to a 6.

    I had 8 rounds of carbo/taxol after my debulk,numbers went to 6 right away. My doc doesn't believe in Maintenance, for what it is worth, although he used to do it regularly. (I know the camp is divided on this issue, but not sure how the percentages fall on both sides.) I had a glorious NED for 8 months, then recurred.

    I'm sorry to hear you are having a problem with the Paclitaxel. It is possible to develop an allergy even though you did fine for 8 cycles. I hope your doc can find some answers for you soon.

    Take care and warm hugs,

    kathleen
  • froggy1
    froggy1 Member Posts: 205
    #7
    kayandok said:

    Hi Ginny
    Awesome numbers! I would die to get back to a 6.

    I had 8 rounds of carbo/taxol after my debulk,numbers went to 6 right away. My doc doesn't believe in Maintenance, for what it is worth, although he used to do it regularly. (I know the camp is divided on this issue, but not sure how the percentages fall on both sides.) I had a glorious NED for 8 months, then recurred.

    I'm sorry to hear you are having a problem with the Paclitaxel. It is possible to develop an allergy even though you did fine for 8 cycles. I hope your doc can find some answers for you soon.

    Take care and warm hugs,

    kathleen

    maintenance chemo from a newbie
    'Hope this gets posted correctly, 'new at this board!

    Thanks for all the imput. This maintenance thing is quite confusing. The more I read, the more confused I get! We all want to have faith in our Docs, but I'm not sure they really know what the outcome will be(in fact, I know it!) My Doc has seen success, so he says, in his practice with maintenance. But, as we all know, sadly it just may prolong remission, not the final outcome!
    As far as my CA125 numbers, I wish lower meant better, but 'not sure that is the case! I had a ton of cancer and my original numbers were in the 300's before surgery.
    I am scheduled for treatment #3 this week(3 weeks on, one off), waiting to see if they will give it to me or not.
    I really can't drive with the pre-meds they give me, which is difficult. These appear to affect me more than the original chemo- go figure! Ugh!
  • saundra
    saundra Member Posts: 1,370 Member
    #8
    froggy1 said:

    maintenance chemo from a newbie
    'Hope this gets posted correctly, 'new at this board!

    Thanks for all the imput. This maintenance thing is quite confusing. The more I read, the more confused I get! We all want to have faith in our Docs, but I'm not sure they really know what the outcome will be(in fact, I know it!) My Doc has seen success, so he says, in his practice with maintenance. But, as we all know, sadly it just may prolong remission, not the final outcome!
    As far as my CA125 numbers, I wish lower meant better, but 'not sure that is the case! I had a ton of cancer and my original numbers were in the 300's before surgery.
    I am scheduled for treatment #3 this week(3 weeks on, one off), waiting to see if they will give it to me or not.
    I really can't drive with the pre-meds they give me, which is difficult. These appear to affect me more than the original chemo- go figure! Ugh!

    Maintenance Taxol
    I chose to do the maintenance Taxol and got an IV every 4 weeks for 11 doses and only toward the end did the CA125 start to rise from below 10 to 15 then 21 and we quit. I was told that at Stage IV the average of NED was 10 months. It has been 7 months since the last dose of maintenance and now the CA125 is 92 but nothing showed on the CT scan in February. I will have another CT on May 4th and may have to start chemo then... My oncologist uses CT, CA-125, and physical exam to determine evidence of disease. I had a CA 125 of 2999 when I started and the oncologist believes it to be a good indicator for me so far. That could change. You can read my history by clicking on my name by this post. Saundra
  • LPack
    LPack Member Posts: 645
    #9
    maintenance
    Ginny,

    I received 7 of my 9 carb/taxol treatments and than was on Hexalen for maintenance. Could only take 2 cycles instead of 6.

    Last cycle I finished in January and still have not recup my blood counts. Yes, these chemicals can wreck your body. But we are each different.

    My CA125 is normal and has been so far, PTL. I have showed NED since November. Diagnosed 1-28-08 3c.

    Will be having CTscan Friday and blood work tomorrow. Praying for good reports again.

    I know that probably didnt help much, but letting you know that my body is telling me it is done right now with treatments. :)

    In His Grip,
    Libby
  • JoanC
    JoanC Member Posts: 231 Member
    #10
    LPack said:

    maintenance
    Ginny,

    I received 7 of my 9 carb/taxol treatments and than was on Hexalen for maintenance. Could only take 2 cycles instead of 6.

    Last cycle I finished in January and still have not recup my blood counts. Yes, these chemicals can wreck your body. But we are each different.

    My CA125 is normal and has been so far, PTL. I have showed NED since November. Diagnosed 1-28-08 3c.

    Will be having CTscan Friday and blood work tomorrow. Praying for good reports again.

    I know that probably didnt help much, but letting you know that my body is telling me it is done right now with treatments. :)

    In His Grip,
    Libby

    Maintenance LPack
    Libby,
    I will be thinking good thoughts for your CT scan and blood work...let us know the good results.
    Hugs, Joan
  • LPack
    LPack Member Posts: 645
    #11
    JoanC said:

    Maintenance LPack
    Libby,
    I will be thinking good thoughts for your CT scan and blood work...let us know the good results.
    Hugs, Joan

    thank you
    Joan,

    Thank you, thank you. I will let you all know as soon as I do!!

    Smiles,
    Libby☺☺☺

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