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Maintenance Chemo

Fight_Back_Kelly
0 Recommendations

Hello All
I was diagnosed in April 09 with IIIc OvCa. I had a very aggressive and successful debulking surgery by my Gyn Onc and then 6 rounds of carbo/taxol chemo. My CA 125 dropped to 28 after first chemo and was at 10.9 after last chemo. My CT scan was clear. On October 8th my doc said I was cancer free. We had a discussion about maintenance chemo where I would receive a lower dose of taxol only, once a month for 12 months. Has anybody gone through this? Any info on this would be much appreciated. Thanks :)

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14 replies

Jennali

I was offered this option and chose not to do it. I recurred very quickly, so of course I had to wonder if my choice had been the right one. I still don't know, as there are no guarantees. My gyn/onc did tell me he would suggest I do something...either the maintenance or a clinical trial.

My thinking at the time was..."I have NED, I am finished with chemo, and I want to put cancer behind me and get on with my life." I also wanted not to have chemo in my system for another year, and I wanted to have hair again. I wanted to build up my immune system.

Also, there is no evidence that maintenance chemo affects survival rates...only the length of time before a recurrence. I was SO convinced that I wouldn't recur! I just wanted to start feeling normal again.

Well, as it has turned out, I have now been on chemo for another year due to my recurrence!

There is certainly no right or wrong answer. You have to make the decision that you feel you can live with. I wrestled with it for several weeks.

Best wishes as you decide.

ohmama123

I was diagnosed March 09 with IIIC as well and my onc just raised the idea of maintenance chemo to me at my appt last week. I have been wrestling with it, too, as I was shocked when he brought it up as an option to consider. My only diff from you in treatments is that I had 6 treatments prior to surgery then 6 treatments following (2 more to go after today!). I have decided not to do maint chemo (same protocol as you noted) for ALL of the reasons Jennali raised, and yet I know the possibility of reccurence will always be there on the road ahead. Who is to say that if we go through the ordeal of maint chemo that it won't come back?

I have decided that my doctor and the chemo had their shot at this, now let me do my part through diet, exercise and some alternative options and see if I can do what is in my control to fight this ugliness off. The nurse in charge of the maint program gave me great advice on this today -- she said I should make whatever decision I make and just trust in the decision, and if a recurrence happens, never ever look back and beat myself up over the "coulda, shoulda, woulda" because there is no way to know the answers to the "what ifs" of "what if I had decided to chose to do it...?"

Good luck with your decision -- Its your body, your life and your choice!

Kristin

pat813

Kelly,
I had similar conversation with my onc..he does not believe that maintenance chemo prolongs survival or that it is the right choice for me. He said that he prefers to wait to see if disease presents itsself and then will treat. It allows body and bone marrow to recover and get strong if have, God forbid, recurrence. I just had post chemo CT scan today, so praying for clean scan.

Good luck with your decision.

Patricia123

I am just like you except I got 9 oriignal IV/IP treatments and just am finishing 24 weekly IV taxols as maintenance.

Some in Baltimore give 12 weekly IV taxols at twice the dose I am getting. I get 40 mgs/m2 a week.

I gotta say while I feel tethered, it has been a piece of cake, few sides, hair is growing back, neuropathy has not worsened but gotten better, blood counts are good, no neulasta or anything. I am glad I did it and wish I had done the 12 weeks not the 24 weeks just to have it over.

My onc thinks it extends disease free interval even with the six months added for chemo.

I wonder if it has been good but I feel wonderful and happy. ANd like your nurse said, NEVER LOOK BACK. That has been my First Commandment of Cancer. Never look back at anything, no regrets, no "I should have known", no "why didnt I see my gyn earlier than I did".

I made that my rule on the way home from diagnosis and it has served me well. Now I am trying to "not look forward",,not anticipate bad stuff. and that is harder.

Whatever you do, don't regret or second guess yourself.

Good luck. There are other threads on maintenance around here. Some get Avastin from what I readl.

nancyt

HI-I was dx. IIIB in may 2005 after surgery I had the standard 6 carbo/taxol then was offered taxol only maintenance for a year (1x month)-it's a personal decision-my Dr. said she would support whatever I chose-I opted to do it-didn't want to look back and have any regrets-It wasn't bad few side effects-fatigue was the worst-hair continued to come back-no problems with blood counts--I recurred in summer of 2008-but I don't regret my choice--I was even able to continue to work (teach elem. school) throughout treatments--good luck to you whatever you decide to do!

Milashka

I was dx Nov 2005, finished 6 rounds of chemo in March 2006, and was given the option of 12 more rounds of maintenance. I had optimal debulking and a CA-125 between 11 and 19 since round 2.

A lot of women choose to continue with the maintenance as extra assurance, and because it feels weird to all of a sudden not do anything at all. My oncologist leaves the decision to the patient. He said it will not prolong my survival, just the cancer-free time, albeit that would be a cancer-free time to spend in chemo.

I chose to get healthy and strong for the next big chemo instead of constantly poisoning my system. I am now 4 years out, and looking at a possible recurrence (CA-125 jumped to 26 last week). I wonder if with maintenance I would have been good to go for another year, but then again, I would have lost one year to more chemo. I have no regrets.

xwordlady

one question- have you been tested for the brca gene?
i was offered the same proposal, and after a lot of 2nd, 3rd, and 4th opinions, decided against it.. am on tamoxifen, and am trying tru diet as well.. if you are gene positive there are interesting studies about how well one responds to treatment and length of time between recurrence and long term survival
my onc said when i reached a decision i would know it, and he was right

Fight_Back_Kelly

Thanks to all of you for your comments and time. I am 95% sure that I will do the maintenance chemo. I feel I was able to tolerate the first 6 rounds of chemo (carbo/taxol) just fine. I had minimal fatigue, no neuropathy, no nausea - just some aches in my knees and hips. I think I will do well with the lower dose and only the one drug. The biggest thing I am dealing with is the continued hair loss. If I could have my hair back I wouldn't even second guess doing the chemo. I know that may sound silly to some of you and it does to most of my family and friends. They say, "It's just hair". But to me it is a reminder of my cancer and to everyone who sees me as the, "poor woman who is going through cancer". I feel strong and healthy on the inside and would like to look that way on the outside.

gatornp

Kelly,

I was diagnosed June '08 with IIIC/OVCA, had debulking surg then 6 cycles carbo/taxol. CA 125 came down from 714 to 14, PET/CT Scan was NED, then started Doxil for 6 cycles maintenance. PET/CT Scan after this in May showed NED. But after 3 months, CA 125 was up again to 95. 3rd PET/CT now showed 3mm spot. Oncologist decided on Carbo/Gemzar/Avastin x 6 cycles, just finished yesterday! Will now have PET/CT and then begin Avastin only as maintenance.

I had most side effects with Gemzar dropping my Hgb/Hct and platelet counts. Had only thinning of my hair this time, had lost most hair on Taxol. So far no major side effects with Avastin. My CA 125 came down to 27 only but my Onc. reassures me that any number below 35 is good. My GYN/ONC wants it below 10 though.

I do know one person on Taxol as maintenance. She goes to Cleveland Clinic in S. FL. and I believe is doing great.

Susie

Cancergrrl

I had the 12 rounds of Taxol for maintenance. It didn't work.

I believe they have some anecdotal evidence that it's helpful but it hasn't been proven.

Good luck!

Cancergrrl

susangolfer

I chose not to do it. I am 3 months post treatment for recurrence. Docs @ MD Anderson advised against it. I too, will not look back. My hair is in and I'm playing golf. Good luck with your decision.

aallison

Kelly,
I am at Stage IV, diagnosed 05/08. Surgery then 7 rounds of the Tax/Platinum then onto the 12 months of low dose Taxol and I did just fine. My only issue was my port. I had to have it removed about 1/2 way thru. My hair came back quickly with minimal loss each time I washed/dryed (normal even without Taxol).

My markers at end of the 1st 7 rounds was below 10 and at the end of the 12 Maintence rounds was 5.

I just had a CLEAR CAT and my marker is 7.
The only ongoing issue I have is constipation (which started me down the road to diagonsis). Even after 3 months of no drugs I still have those issues.
This is a personal decision but I'm glad I chose to go for it.
Best wishes to you!

meghany

I was diagnosed with III C/OC Oct 08. I went through surgery and 6 rounds IV/IP Cisplatin/abraxane. I had a clean scan after treatment in June 09. It took me back when he brought up the maintenance chemo as I was already planning life without chemo. The maintenance chemo offered was Abraxane once a month for the next year. I opted to do the maintenance chemo not wanting to look back and feel I didn't do all I could. My hair had started to come back before I started maintenance in Aug. After my first mnt. treatment I lost a little hair but that was the only time it happened. My hair is now growing back on mnt. chemo and I haven't worn hats or scarves since Aug. My CA 125 was the lowest it has ever been this past month as well.

Good luck with your decision. I'm sure you will chose what is best for you!

Fight_Back_Kelly

Thank you all for your replies. I have decided to do the maintenance chemo, starting on November 20th. My doc said I am not signing a contract, if it gets to be too much, I can stop at any time. I am assuming I will do okay on just the Taxol since I did fine with the first 6 rounds of Taxol/Carbo combo. In addition to the maintenance, I am following the "Anti Cancer" diet (Anticancer: A New Way of Life by David Servan-Schreiber PhD) and daily exercise. I feel good that I am being proactive - not just by doing the mt. chemo but also by living healthier with the foods I eat and exercise. Again, thank you all for your replies, I really appreciate all that I hear.

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