My doctor's responses to questions about Taxol maintenance

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Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
Today was number 7 of my 12 Taxol maintenance infusions. I took the opportunity to ask my doctor some questions, regarding the protocol for this treatment.

Does anyone ever have a recurrence on consolidated treatment? No
Then why not just keep giving it? Several reasons for this. It's not considered "good medicine" to pump unlimited amounts of poisons into people's bodies forever, especially when at least some of them don't even need the treatment. Of course, no one knows who needs it and who doesn't, meaning who would have a recurrence anyway and who won't.
Also, it's expensive. The one year of Taxol maintenance costs about $50,000. Insurance companies (and Medicare) are likely to balk at paying out that kind of money, forever, without proof that it's beneficial. And, finally, there would eventually be side effects, even if there was no recurrence of the cancer. The body's bone marrow, for one thing, would eventually be compromised, or even destroyed.

Is this a reduced dose? No, not really. It's almost the same dose I was getting for the initial treatment, or about 155 mg/m2. Weekly Taxol is given in a reduced dose, but not the monthly protocol.

Some doctors don't believe it helps, correct? Correct. And there are no studies that say it will prolong life. I said that I call it chicken soup for cancer, and he laughed, saying that was about right. It won't hurt (most people) and it might help.

I have tolerated the Taxol very well. Would you, I asked, ever consider extending the treatment beyond the 12 infusions? No....when the 12 are finished, I'm done.

Then we just wait and see what happens? Yes...that's all we can do.

He seems to think I will go "several years" before I have a recurrence. I hope he's right. No......I hope he's WRONG. I hope I never have a recurrence. That's a lot to ask, I know. Still, I can't help but want the whole thing - a miraculous cure, as we Catholics call it.

Comments

  • froggy1
    froggy1 Member Posts: 205
    #2
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    Thanks Carlene!
    As we seem to be following similar treatment plans, you had all my questions answered!
    I finished 12 monthly treatments in June and am now at the "holding my breath" stage.
    'Not feeling all that great(having major fatigue) and, of course, wondering if IT is back already...I am already dreading the next CA125 and doctor visit.
    'So hoping your Doctor is right in saying that you will go several years before recurring, but 'hoping that you never recurr!
    Hugs, Ginny
  • kayandok
    kayandok Member Posts: 1,202 Member
    #3
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    Thanks,
    Carlene for sharing the details from you conversation with your doctor. I am surprised at the dosage, I hadn't been able to find the dose used for your protocol. You are one tough cookie for toerating this so well for so long.

    I go in today for my second taxol infusion (80mg/m2). Last week I had the carbo (AUC6) and taxol (80mg) I was really surprised at how hard the first dose hit me. I breezed through the carbo/taxol 3 years ago. I am just coming out of my fog, and ready for my hit today. Hopefully it will be better than last week.

    kathleen
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #4
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    kayandok said:

    Thanks,
    Carlene for sharing the details from you conversation with your doctor. I am surprised at the dosage, I hadn't been able to find the dose used for your protocol. You are one tough cookie for toerating this so well for so long.

    I go in today for my second taxol infusion (80mg/m2). Last week I had the carbo (AUC6) and taxol (80mg) I was really surprised at how hard the first dose hit me. I breezed through the carbo/taxol 3 years ago. I am just coming out of my fog, and ready for my hit today. Hopefully it will be better than last week.

    kathleen

    I was surprised, too. I
    I was surprised, too. I don't know why, but I assumed that the maintenance dosage was much lower than what they give us for active treatment. He (my doctor) said that it's about 7/8 of the initial dose, which is 175mg/m2.

    I don't know whether I'm tough or if I just don't have any other choice. You never know how strong you are, until being strong is the only option you have.

    My doctor checks me every month for neuropathy. That seems to be his main concern with the Taxol.

    This was my 7th treatment and it has kind of knocked the wind out of my sails. Yesterday I was sooooooooo fatigued. My husband said he didn't understand that, since I slept most of the day at the treatment center. I don't know how to explain that "sleepy" and "tired" are not synonymous. I guess it's a Cancer thing.

    Here is a link to a research article about Taxol maintenance from 2007 that was done using the full dosage (175mg/m2).
    http://www.cancer-therapy.org/CT5B/HTML/33._Mousavi_et_al,_267-272.doc .htm
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
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    Hissy_Fitz said:

    I was surprised, too. I
    I was surprised, too. I don't know why, but I assumed that the maintenance dosage was much lower than what they give us for active treatment. He (my doctor) said that it's about 7/8 of the initial dose, which is 175mg/m2.

    I don't know whether I'm tough or if I just don't have any other choice. You never know how strong you are, until being strong is the only option you have.

    My doctor checks me every month for neuropathy. That seems to be his main concern with the Taxol.

    This was my 7th treatment and it has kind of knocked the wind out of my sails. Yesterday I was sooooooooo fatigued. My husband said he didn't understand that, since I slept most of the day at the treatment center. I don't know how to explain that "sleepy" and "tired" are not synonymous. I guess it's a Cancer thing.

    Here is a link to a research article about Taxol maintenance from 2007 that was done using the full dosage (175mg/m2).
    http://www.cancer-therapy.org/CT5B/HTML/33._Mousavi_et_al,_267-272.doc .htm

    Hiya Carlene
    Hi Carlene, thought I'd just stop by to say hello. I read all of your posts with great interest and picked up on the fatigue you talk about. I am not on chemo at the moment but I still get the fatigue. I just love your phrase "You never know how strong you are, until being strong is the only option you have" You are amazing as you always seem so together and up-beat. Hang in there, I am thinking about you.
    Tina xxxx
  • NCEllen
    NCEllen Member Posts: 115
    #6
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    Carlene, as I read this
    Carlene, as I read this really great info, I was struck with the same focus statement that Tina referred to also: You never know how strong you are, until being strong is the only option you have.... love it!
    Wow, that is a powerful statement no matter what comes 'round the bend for any of us. My next lab is in 2 weeks and you've given me my fight mantra for that little rock that I stand on - you know, the one just so you can see one heads-up while moving forward so-to-speak. Take care sisters and Teal family - El
  • carolyn45
    carolyn45 Member Posts: 100
    #7
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    maintenance taxol
    Thanks so much for the info. I've had great results from my first 3 rounds of carbo/taxol. My CA125 went from 1587 to 41 before my debulking surgery. Although I'm seemingly cancer free, 3 more rounds of chemo is the basic necessity, as microscopic cancer still remains. Today my oncologist was pushing taxol maintenance. He's a brilliant guy, and he says the LATEST research shows definite delay of recurrence and a higher rate of no recurrence amongst those who do the 12 month maintenance at 175mg/m2.

    Supposedly the maintenance is at a low enough dose that there are minimal side effects. I'm been getting 270 of taxol each time, and I'm 5'5'' and 110 pounds with clothes, so I'm a small person. Like you, I've tolerated the chemo VERY well. I think one reason is that I see the "poisons" as the "holy army of God." As a teenager reading the Old Testament, I was appalled at Jehovah's instructions to "wipe out the infidels, everything that breathes, on God's holy land." Hard to warm up to a God like that. Not a fundamentalist any more, I take "logical progressions" of scripture based on a different world. We are ALL God's very own children, and thus our bodies are holy ground. Cancer is the invading infidel. The "holy army" called taxo/carbo is doing God's work by destroying all life of the invaders. I blow kisses at my infusion bags and thank them with all my heart for the wonderful work they are doing. Although I'm not fond of pain &/or nausea, it's all part of allowing me to stay in this body longer, which I believe is right at this time.

    I'll ask my oncologist about what studies show the definite positives and see if I can post them on this site.

    Love and Blessings to All,
    Carolyn
  • pattysoo
    pattysoo Member Posts: 170
    #8
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    Taxol
    Good post, as always. I hope you really do experience a total remission forever. Ovarian Cancer is just so difficult to understand. Mostly it just makes me mad! Are you still keeping your eye on the Mimosa project? I can't find any new information about it.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    #9
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    pattysoo said:

    Taxol
    Good post, as always. I hope you really do experience a total remission forever. Ovarian Cancer is just so difficult to understand. Mostly it just makes me mad! Are you still keeping your eye on the Mimosa project? I can't find any new information about it.

    I hope I made the right decsion
    My dr asked me even though scans show ned, that I can continue matainance chemo for 3 more months but she left it up to me. I told her I could use a break from chemo, so far so good . I see her next week for my monthly check-up. Hope we are ned for good..val
  • upsofloating
    upsofloating Member Posts: 466 Member
    #10
    Options
    carolyn45 said:

    maintenance taxol
    Thanks so much for the info. I've had great results from my first 3 rounds of carbo/taxol. My CA125 went from 1587 to 41 before my debulking surgery. Although I'm seemingly cancer free, 3 more rounds of chemo is the basic necessity, as microscopic cancer still remains. Today my oncologist was pushing taxol maintenance. He's a brilliant guy, and he says the LATEST research shows definite delay of recurrence and a higher rate of no recurrence amongst those who do the 12 month maintenance at 175mg/m2.

    Supposedly the maintenance is at a low enough dose that there are minimal side effects. I'm been getting 270 of taxol each time, and I'm 5'5'' and 110 pounds with clothes, so I'm a small person. Like you, I've tolerated the chemo VERY well. I think one reason is that I see the "poisons" as the "holy army of God." As a teenager reading the Old Testament, I was appalled at Jehovah's instructions to "wipe out the infidels, everything that breathes, on God's holy land." Hard to warm up to a God like that. Not a fundamentalist any more, I take "logical progressions" of scripture based on a different world. We are ALL God's very own children, and thus our bodies are holy ground. Cancer is the invading infidel. The "holy army" called taxo/carbo is doing God's work by destroying all life of the invaders. I blow kisses at my infusion bags and thank them with all my heart for the wonderful work they are doing. Although I'm not fond of pain &/or nausea, it's all part of allowing me to stay in this body longer, which I believe is right at this time.

    I'll ask my oncologist about what studies show the definite positives and see if I can post them on this site.

    Love and Blessings to All,
    Carolyn

    Not sure what your stage or
    Not sure what your stage or histology type is, but here is recent study re maintenance treatment:

    A Randomized Phase III trial of IV Carboplatin and Paclitaxel × 3 Courses Followed by Observation Versus Weekly Maintenance Low-Dose Paclitaxel in Patients With Early-Stage Ovarian Carcinoma: A Gynecologic Oncology Group Study
    Gynecol Oncol. 2011 May 6;[Epub Ahead of Print], RS Mannel, MF Brady, EC Kohn, P Hanjani, M Hiura, R Lee, K DeGeest, DE Cohn, BJ Monk, H Michael

    TAKE-HOME MESSAGE
    This randomized phase III trial concluded that there is no benefit with maintenance paclitaxel to patients with early stage, high-risk ovarian cancer.

    Abstract

    Objective: To compare the recurrence-free interval (RFI) and safety profile in patients with completely resected high-risk early-stage ovarian cancer treated with intravenous (IV) carboplatin and paclitaxel with or without maintenance low-dose paclitaxel for 24 weeks.

    Methods: Eligibility was limited to patients with stage IA/B (grade 3 or clear cell), all IC or II epithelial ovarian cancer. All patients were to receive carboplatin AUC 6 and paclitaxel 175 mg/m2 q3 weeks × 3 courses with random assignment to either observation or maintenance paclitaxel 40 mg/m2/week × 24 weeks. Recurrence required clinical or radiological evidence of new tumor.

    Results: There were 571 patients enrolled onto this study, of whom 29 were deemed ineligible due to inappropriate stage or pathology, leaving 542 patients. At least 3 cycles of treatment were administered to 524/542 (97%) of patients, and among those assigned to maintenance paclitaxel, 80% completed the regimen. The incidence of grade 2 or worse peripheral neuropathy (15.5% vs. 6%), infection/fever (19.9% vs. 8.7%), and dermatologic events (70.8% vs. 52.1%) was higher on the maintenance regimen (p < 0.001). The cumulative probability of recurring within 5 years for the maintenance paclitaxel regimen is 20% vs. 23% for surveillance (hazard ratio 0.807; 95% CI: 0.565–1.15). The probability of surviving 5 years was 85.4% and 86.2%, respectively.

    Conclusion: Maintenance paclitaxel at 40 mg/m2/week × 24 weeks added to standard dose AUC6 and paclitaxel 175 mg/m2 × 3 doses provides no significant increase in RFI.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    Options
    upsofloating said:

    Not sure what your stage or
    Not sure what your stage or histology type is, but here is recent study re maintenance treatment:

    A Randomized Phase III trial of IV Carboplatin and Paclitaxel × 3 Courses Followed by Observation Versus Weekly Maintenance Low-Dose Paclitaxel in Patients With Early-Stage Ovarian Carcinoma: A Gynecologic Oncology Group Study
    Gynecol Oncol. 2011 May 6;[Epub Ahead of Print], RS Mannel, MF Brady, EC Kohn, P Hanjani, M Hiura, R Lee, K DeGeest, DE Cohn, BJ Monk, H Michael

    TAKE-HOME MESSAGE
    This randomized phase III trial concluded that there is no benefit with maintenance paclitaxel to patients with early stage, high-risk ovarian cancer.

    Abstract

    Objective: To compare the recurrence-free interval (RFI) and safety profile in patients with completely resected high-risk early-stage ovarian cancer treated with intravenous (IV) carboplatin and paclitaxel with or without maintenance low-dose paclitaxel for 24 weeks.

    Methods: Eligibility was limited to patients with stage IA/B (grade 3 or clear cell), all IC or II epithelial ovarian cancer. All patients were to receive carboplatin AUC 6 and paclitaxel 175 mg/m2 q3 weeks × 3 courses with random assignment to either observation or maintenance paclitaxel 40 mg/m2/week × 24 weeks. Recurrence required clinical or radiological evidence of new tumor.

    Results: There were 571 patients enrolled onto this study, of whom 29 were deemed ineligible due to inappropriate stage or pathology, leaving 542 patients. At least 3 cycles of treatment were administered to 524/542 (97%) of patients, and among those assigned to maintenance paclitaxel, 80% completed the regimen. The incidence of grade 2 or worse peripheral neuropathy (15.5% vs. 6%), infection/fever (19.9% vs. 8.7%), and dermatologic events (70.8% vs. 52.1%) was higher on the maintenance regimen (p < 0.001). The cumulative probability of recurring within 5 years for the maintenance paclitaxel regimen is 20% vs. 23% for surveillance (hazard ratio 0.807; 95% CI: 0.565–1.15). The probability of surviving 5 years was 85.4% and 86.2%, respectively.

    Conclusion: Maintenance paclitaxel at 40 mg/m2/week × 24 weeks added to standard dose AUC6 and paclitaxel 175 mg/m2 × 3 doses provides no significant increase in RFI.

    This thread is from Sept of
    This thread is from Sept of 2010. Since then I have completed the Taxol maintenance and I remain NED, officially since March of 2010, so almost 15 months.

    I was stage IIIc at diagnosis, so did not fit the profile of the study you cited. I know that maintenance therapy is very controversial. My doctor said he had experienced good results with it, within his own practice. I would probably have done it anyway. But that's just me.

    I can't say for sure that Taxol gave me a year of good health, but I certainly give it some credit. My doctor told me that it would not prolong my life, but it might push back a recurrence.

    Carlene

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