If PET/CT scan is clear but CA125 is 160 would you go back on chemo

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lenjam
lenjam Member Posts: 51
in Ovarian Cancer #1
Mom did 7 infusions of carbo/taxol and got her ca125 down to 89. She had the PET/Ct scan that showed no cancer. But her CA went up to 160 and now gyn/onc wants to try Gemzar. Mom got such bad neuropathy in her feet that she can barely walk. Has to use a walker or wheelchair to get around. She's started to do physical therapy and it's helping her to get walking. She still has terrible pain in her feet and they're numb all the time. Told the longer she's off the chemo it will continue to improve. I've read that it can be permanent. But, hope not! Mom doesn't know what to do. Start chemo again or wait for symptoms or something to show up on a scan? Do you treat the number or wait for symptoms or something to show up on the scan?

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  • cfont11
    cfont11 Member Posts: 115
    #2
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    I can only tell you what my oncologist has told me. I had 6 treatments of taxol/carbo last year and my CA 125 went down to 33. The normal range is under 35, or some labs use 30 as the guideline. This was before I had surgery. I got bad neuropathy from the chemo and I take neurotin, 300 mg. 3 times a day and alpha lipoic acid, 100 mg, 3 times a day. They have both helped with the neuropathy. My oncologist told me that gemzar does not cause neuropathy nor does it make neuropathy worse. She has also told me that you can have tumors show up on a CT scan and have a low CA 125 number. Conversely, you can have a hight CA 125 but nothing show up on a scan. It also depends on how small a tumor the CT machine will pick up. My oncologist's philosophy is that if the CA 125 starts trending up, then she would recommend more chemo. I have to have 2 more treatments as I had surgery in Jan. and there are microscopic cells left. Gemzar was recommended due to the neuropathy but we have decided to use a reduced dose of taxol since my feet are getting better. Good luck with whatever your Mom decides.
    Chris
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #3
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    cfont11 said:

    new
    I can only tell you what my oncologist has told me. I had 6 treatments of taxol/carbo last year and my CA 125 went down to 33. The normal range is under 35, or some labs use 30 as the guideline. This was before I had surgery. I got bad neuropathy from the chemo and I take neurotin, 300 mg. 3 times a day and alpha lipoic acid, 100 mg, 3 times a day. They have both helped with the neuropathy. My oncologist told me that gemzar does not cause neuropathy nor does it make neuropathy worse. She has also told me that you can have tumors show up on a CT scan and have a low CA 125 number. Conversely, you can have a hight CA 125 but nothing show up on a scan. It also depends on how small a tumor the CT machine will pick up. My oncologist's philosophy is that if the CA 125 starts trending up, then she would recommend more chemo. I have to have 2 more treatments as I had surgery in Jan. and there are microscopic cells left. Gemzar was recommended due to the neuropathy but we have decided to use a reduced dose of taxol since my feet are getting better. Good luck with whatever your Mom decides.
    Chris

    There has been a study done
    There has been a study done assessing if it is better to wait for symptoms to present themselves of treat on a rising ca125, the study concluded that the women who waited for the symptoms to present themselves actually lived marginally longer!!!!
    Now to you and I the deadly logical people we are , the quicker you attack it the less there is to kill off right??!!!?? But the stats are there is black and white, I don't if I would be comfortable waiting for the symptoms , I guess it is a personal choice.

    Liz x
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    Mum2bellaandwilliam said:

    There has been a study done
    There has been a study done assessing if it is better to wait for symptoms to present themselves of treat on a rising ca125, the study concluded that the women who waited for the symptoms to present themselves actually lived marginally longer!!!!
    Now to you and I the deadly logical people we are , the quicker you attack it the less there is to kill off right??!!!?? But the stats are there is black and white, I don't if I would be comfortable waiting for the symptoms , I guess it is a personal choice.

    Liz x

    I have read the same studies
    I have read the same studies as Liz, but I would start chemo again if my CA125 showed an upward trend.

    I also wanted to never stop chemo (Taxol maintenance) either. I'm just extremely pro-active. Or very controlling.

    Carlene
  • Mum2bellaandwilliam
    Mum2bellaandwilliam Member Posts: 412
    #5
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    Hissy_Fitz said:

    I have read the same studies
    I have read the same studies as Liz, but I would start chemo again if my CA125 showed an upward trend.

    I also wanted to never stop chemo (Taxol maintenance) either. I'm just extremely pro-active. Or very controlling.

    Carlene

    There you are a Carlene!!!
    There you are a Carlene!!! Haven't seen you on here for a while , did put a post up!!!
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
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    Hi lenjam
    I am having the same dilema, and understand the stress of making this decision. The complicating factor is your mom's age and her neuropathy being that bad. Mine is bad too, and in when I get up I don't use a walker, but it sure would be nice! (I have had 4 different chemo combinations for the last 4 years.) I think that QOL and your mom's age has to be balanced into the decison making process. It is not an easy decison, and I pray that you have the wisdom to make the right decision, courage to follow through and then complete peace with that decision.

    hugs,
    kathleen
  • Lisa13Q
    Lisa13Q Member Posts: 677
    #7
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    Dear LenJam
    My answer is no. My mother is in same dilemma....I have read all the research and it is overwhelmingly in favor of not going bak on early chemo...QOL issues and reality is it has not better outcome.....Chemo is nasty stuff.....EVen now, my mother is on her 4th type and it is working, but she has to take a break, the side effects are terrible....this is no life......ultimately, however, we gave Mom the decision...and told her we would support whatever she decided.....hope this is helpful.....prayers to you and your Mom......I totally understand where you are.....Lisa
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #8
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    Lisa13Q said:

    Dear LenJam
    My answer is no. My mother is in same dilemma....I have read all the research and it is overwhelmingly in favor of not going bak on early chemo...QOL issues and reality is it has not better outcome.....Chemo is nasty stuff.....EVen now, my mother is on her 4th type and it is working, but she has to take a break, the side effects are terrible....this is no life......ultimately, however, we gave Mom the decision...and told her we would support whatever she decided.....hope this is helpful.....prayers to you and your Mom......I totally understand where you are.....Lisa

    In the same situation, my onc said NOT to do chemo on CA125 #.
    My chemo oncologist suggested, when I had a NED CT/PET scan (soooooo long ago!), that I take Megace/Tamoxifen to hold me since my CA125 was climbing slightly and in the 40's. But my gyne-onc said "Why would you take ANYTHING other than a vacation when this could be the start of a multi-year remission?!"

    It WASN'T the start of a multi-year remission, and 4 1/2 months later I was back in chemo, but I did have that wonderful 4 1/2 month break from treatments. That was over a year ago, and the last chemo break I had. I strongly encourage ANYONE to take a chemo break when you safely can. My bone marrow is pretty much shot from all the chemo I've had and now I get chemo breaks because my WBC, RBC, & platelets are too low to safely get chemo. But an 'unsafe' chemo break like that is not the same as the SAFE break opportunity you're talking about.

    It's such a personal decision, though. If you can't relax into the remission and BELIEVE in it and ENJOY it, then you might feel safer to be back into treatment. But I would vote "NO" to chemo now in the same situation.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #9
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    When my recurrence was discovered my ca125 was 10 and it was a 13mm area on my colon. I thought for sure chemo would knock it right out. Boy was I wrong. Here I am 15 months later without a chemo break and an exhausted bone marrow recovery. It is easy to play Monday morning quaterback and say I should have waited until I had symptoms. Granted the last year of my life has been pretty uneventful in regard to symptoms. I grew my hair back, enjoyed my kids and traveled despite being on chemo. Now things aren't so easy for me anymore, my body is tired and my bone marrow is suffering...of course the will to live still thrives. Should I have waited...yeah...probably. Could I have waited....I honestly can't say I could have waited.

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