Gyn/Oncs point of view

leesag
leesag Member Posts: 621 Member
in Ovarian Cancer #1
Elevated CA125 shows an upward trend. When it passes 100, he recommends treatment. Briefly considered Tamoxifen, but decided against it. He said, if it were his wife, he would wait until it passes 100 and then opt for second line chemo. The question is this, which second line is the best choice? I'm not worried about losing my hair, I'm worried about not kicking Cancer's A$$.

So, my dear Teal Warrior Sisters. I'm open for suggestions and advice! Time to put the boxing gloves back on!

Hugs!

Leesa

Comments

  • beth1465
    beth1465 Member Posts: 63 Member
    #2
    Well when mine did that I
    Well when mine did that I first went on Gemzar. After 5 treatments my CA-125 started rising again. Now I've just started Doxil. When mine first started to go up the MD said he wasn't going to get excited unless it went over 300. Well, 6 wks later it was over 300. I just pretty much do what they tell me. The MD said what works well for one may not work for another, you just have to keep trying till you hit on the right drug.

    Beth
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #3
    beth1465 said:

    Well when mine did that I
    Well when mine did that I first went on Gemzar. After 5 treatments my CA-125 started rising again. Now I've just started Doxil. When mine first started to go up the MD said he wasn't going to get excited unless it went over 300. Well, 6 wks later it was over 300. I just pretty much do what they tell me. The MD said what works well for one may not work for another, you just have to keep trying till you hit on the right drug.

    Beth

    my dr. said to have more chemo
    and my ca-125 was only 38. but pet/ct scan showed 2 areas very small in abdomen so I had 6 more months of chemo. I guess it is your dr. regimen on how he treats us...val
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
    If it were me, I would try
    If it were me, I would try to do Carbo/Taxol again. It worked well the first time, with managable side effects. Maybe add Avastin, as well.

    I know there are studies that say wait until you have symptoms to treat a recurrence, but I'm with your doctor - start now, before the beast has a chance to get any stronger.

    Tamoxifen can be taken at the same time as chemo, can't it? I know you can take it for a long time - as in years. I have a friend who took it following treatment for breast cancer, and she is still on it after 4 or 5 years.

    Has your doctor made any recommendations?

    Carlene
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #5
    Hissy_Fitz said:

    If it were me, I would try
    If it were me, I would try to do Carbo/Taxol again. It worked well the first time, with managable side effects. Maybe add Avastin, as well.

    I know there are studies that say wait until you have symptoms to treat a recurrence, but I'm with your doctor - start now, before the beast has a chance to get any stronger.

    Tamoxifen can be taken at the same time as chemo, can't it? I know you can take it for a long time - as in years. I have a friend who took it following treatment for breast cancer, and she is still on it after 4 or 5 years.

    Has your doctor made any recommendations?

    Carlene

    I'm with Carlene; carbo/taxol/avastin.
    I'd go with something PROVEN to work on you before I'd try something new. If adequate time has gone by (more than 6 months) since you last had carbo/taxol, I'd go right back to it and add the latest-and-greatest avastin to it just to go balls-to-the-wall.

    I don't think I'd throw in tamoxifen just yet. That could be something to hold back and maybe use to hold you steady once you are back in remission.

    My perspective on starting chemo BEFORE symptoms comes from a different place,...as someone who has been on constant chemo now for over a year, and remained symptom-free throughout. I would personally never start treatment now unless I had a CT scan showing something and a PET scan that lit it up. Take it from someone who will never get another remission/chemo-break again, you want to prolong any time OUT of treatment as long as you can if you can safely do so. & it sounds like you could safely wait this out.

    Now if you will be fretting and worrying while you wait it out, then you may as well jump into treatment. I know that was my reasoning when I had my 1st recurrence; I thought I'd be happier in battle mode and unable to enjoy my tenuous remission once I lost faith in it. When my CA125 spiked to 155, I had a CT-scan that showed enlarged nodes followed by a PET scan that lit those nodes up. So my decision was pretty clear. I'd wait until you have some confirmation of recurrence beyond a gentle rise in CA125. Once you start down the treatment road, sometimes you can't get back off. & your body can only take so much chemo, long-term. Whatever you decide, don't second-guess yourself. I try to never look back and say "what if..."
    ((((Leesa))).
  • NCEllen
    NCEllen Member Posts: 115 Member
    #6
    What worked first time 'round..
    has so far kept me going in the (?) right direction. When I recurred this past Dec., the CA numbers had started the up-trend, but I was feeling really well and I maybe selfishly wanted that feel good time at Christmas for the birth of my 1st grand-daughter so I did delay by a few weeks the start of re-treatment.

    My initial treatment with Carbo/taxol in '09 left me in a 16 month remission. I had opted not to do Taxol maint. just because I needed (for me) some time to re-group after surgery, chemo, ileostomy,then the reversal and blah blah etc. I also thought Taxol would be my back pocket drug should I need it again.

    So- now I'm on a regimen of 8 Carbo/Taxol treatments (just finished #5). I was cast (sounds like fishing) in a randomized study for carbo/taxol OR the carbo/taxol plus avastin. I was put in the carbo/taxol group. Although my first CT after tx #3 showed great reduction in the tumors overall it was not totally clear. If it had been, I would have only had 6 rounds instead of the 8. My Ca-125 was within normal limits after the first infusion and continues to be in single digits. I also know that the digits don't tell the whole microscopic story. My worry with the avastin had I been chosen for that study group was of course the bowel issues with bleeding, perfs and obstruction. I may still strongly consider that option though against the odds of a serious side effect not happening, because it sounds like such a promising addition for treatment.

    I feel like after this 2nd round of therapy, I will be looking for some type of low dose maintenance since I know the 'seeds' are and will continue to lurk around. Again, that's just my insight into my own system. So far for me, the bad days occur about 4 days after infusion, really bad leg pain- but then I turn the corner and look forward to the good days! Next week should be a great week and I plan to play (not clean the house either).

    The nausea has been well kept under control with Emend and Zofran, a couple of days of decadron keeps my appetite up and the percocet for pain which actually makes me too druggy feeling. I wish I could just sleep those couple of days away...

    I have another new hair hat for summer and I'm also a little more comfortable with myself this time. Maybe I'm confident in the 'it is what it is' acceptance of how to keep on keepin' on, but I'm still not a pushover and I have my own independance and determination- rebel of the 60's still ;). I also now feel more empowered to educate women (and men) about ovarian cancer- I really show my TEAL!!!! But I show it for all of us known and unknown and for our future generations!

    In the end, you will make the best decision for you and your family and your life. Don't worry about the what if's because we move forward together (never ever alone) in the life ahead of us. Bestes to you and ..deep breath (( :♥:♥: )) Ellen
  • carolenk
    carolenk Member Posts: 907 Member
    #7
    lindaprocopio said:

    I'm with Carlene; carbo/taxol/avastin.
    I'd go with something PROVEN to work on you before I'd try something new. If adequate time has gone by (more than 6 months) since you last had carbo/taxol, I'd go right back to it and add the latest-and-greatest avastin to it just to go balls-to-the-wall.

    I don't think I'd throw in tamoxifen just yet. That could be something to hold back and maybe use to hold you steady once you are back in remission.

    My perspective on starting chemo BEFORE symptoms comes from a different place,...as someone who has been on constant chemo now for over a year, and remained symptom-free throughout. I would personally never start treatment now unless I had a CT scan showing something and a PET scan that lit it up. Take it from someone who will never get another remission/chemo-break again, you want to prolong any time OUT of treatment as long as you can if you can safely do so. & it sounds like you could safely wait this out.

    Now if you will be fretting and worrying while you wait it out, then you may as well jump into treatment. I know that was my reasoning when I had my 1st recurrence; I thought I'd be happier in battle mode and unable to enjoy my tenuous remission once I lost faith in it. When my CA125 spiked to 155, I had a CT-scan that showed enlarged nodes followed by a PET scan that lit those nodes up. So my decision was pretty clear. I'd wait until you have some confirmation of recurrence beyond a gentle rise in CA125. Once you start down the treatment road, sometimes you can't get back off. & your body can only take so much chemo, long-term. Whatever you decide, don't second-guess yourself. I try to never look back and say "what if..."
    ((((Leesa))).

    Second time around
    Dear Leesa

    I agree with Carlene regarding choice of treatment--it would be the Carbo or cisplatin once/month & dose-dense taxol which is weekly AND Avastin.

    And I agree with Linda regarding holding out as long as possible before getting back on chemo--the research shows a better outcome when the break is longer.

    Eating cruciferous vegetables will help your liver clear out excess estrogen (even when ovaries are gone, fat cells make estrogen).

    I am a big fan of the integrative approach to stopping the cancer process, too.

    Best wishes on your future.

    Carolen
  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    Leesa,
    I like your fighting spirit! Is your doctor recommending carbo/taxol? I agree that if it worked the first time, it is a good choice.
    Keep us posted,
    kathleen
  • Mwee
    Mwee Member Posts: 1,338
    #9
    kicking A$$
    you responded so very well to chemo the last time and my guess is that you'll be put back on the old reliable carbo/taxol. My CA-125 was 64 when I was started back on chemo, but I had evidence of disease (lymph node/spleen). You wear those Big Girl Panties so very well and I know you'll be ready to kick butt.
    ((((HUGS)))) Maria

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