Signed on for another year...

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I had my last session of the inital chemo yesterday (Carbo/Taxol). My doctor and I talked and we are scheduling a CT scan and pelvic exam. If those look good (and he thinks they will), I have agreed to do a year of monthly Taxol treatments (reduced dosage).

He says this is not part of my "scheduled treatment", nor is it true maintenence. There was a study using this protocol that was never completed. They terminated it because it did not look to be heading in the direction they wanted (a treatment that would increase patient survival), and because many patients could not complete the study due to side effects (primarily neuropathy, which I have thus far escaped), but my doctor thinks it has merit. At the very least, he thinks it may push back a recurrance, and we all know what the stats are...80% of all OVC patients respond well to first line treatment, but most suffer a recurrance within 12 months.

The downside is that I will not have hair for another 18 months or so. I just ordered a back-up wig from the ACS, so I will have something to wear when I have to wash/set my everyday hair.

I don't get a new CA125 done until mid-March. I am anxious to see my new number.

Carlene

Comments

  • NCEllen
    NCEllen Member Posts: 115
    #2
    Decided to Wait for Now
    Hi Carlene- I'm new with this, my first post. I was diagnosed Jan. '09 with Stage III. I had the optimal hyst./debulking and washings. Complications landed me in the hosp. 3 times in Feb. and I came home with a wound vac and temp. ileostomy. Started the taxol/carbo tx. in March and finished July 20th (6 tx. in all). My Ca-125 just before my last treatment was 3.2.
    My next Ca-125 that was done in Aug., about 6 weeks prior to my ileo. reversal (10-2-09) was 3. I had a 'second' look surgery and all the biopsy's and washings were clear.

    My last ca-125 done Dec. 28 was 2.35. I couldn't believe it. My onc also advised me of the taxol treatment/study for a year, but I declined at that time. My whole last year was just a mess. Our daughter had just been married the prevous Nov. and gave up so much of her newlywed year to come home and help out. My husband is living with prostate cancer that was diagnosed 2002. My next Ca-125 is due the end of March and I've prepared myself for the numbers and chemo if I need it. I'll be anxious to see how you do. Here's wishing you and all you lovely, wonderful brave teal warrior's hugs and prayers. I promise to post again.

    - Ellen
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    good luck!
    I would have jumped at the option of taxol for a year. Sloan Kettering doesn't do it I guess. I had the same results as the previous poster. My final ca125 was 7. I had second look surgery when they reversed my illeostomy in Feb. 09 and the biopsies were all clear. My reoccurence was discovered at the 8 month mark but I do believe I would have went one year without a confirmed reoccurence if it was not for my surgeon pushing for a PETscan. My ct was clear at 8months but my ca125 was slowly rising although way within the normal range. I wonder if I was on the taxol if I could have held off for awhile. Well, GOOD LUCK!!!! The hair is a downside. wigs.com has great wigs at pretty good prices. I was able to purchase several....artifical hair of course. Hairdressers even asked me where I got my hair done because it looked so good.
  • Unknown
    Unknown
    #4
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    Unknown
    #5
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  • nancy591
    nancy591 Member Posts: 1,027 Member
    #6
    unknown said:

    This comment has been removed by the Moderator

    Nancy707
    Hi Nancy,
    It's really great that you stick around. I think you were the first response I recv'd on my first post here. I am so happy you have had a good outcome thus far. I'm also envious though I will admit. I truly believed I'd bet the odds too.
  • froggy1
    froggy1 Member Posts: 205
    #7
    Same plan
    Hi Carlene,
    It is interesting to hear the approach you are taking. My story is very similar. I had 8 rounds of carb/taxo, then my doctor gave me the year of taxol as a choice. He wants me to have 12 treatments. I know some docs don't believe in this, so it makes the choice hard.
    I do feel some comfort in that I am being watched all the time. I get chemo every 21 days and get a CA125 each month.
    When you says that most recurr after 12 months, is that from initial diagnosis or from the end of the initial chemo? I have been kind of avoiding stats, makes me sad. It was kind of funny that my CA125 actually did drop a tad after I started the lower dose. My baseline is now 5, which doesn't give me much downward mobility!
    By the way, my hair started to grow back while on the lower dose. I have never had short hair, but I could go without a wig now and not look too weird. I also got my eyebrows back, too:)
    Best of luck to you. 'Hope all goes well. I get a reaction the day after, my face gets gets red and swells, but then it is gone the next day.

    Thanks for sharing, Froggy
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #8
    froggy1 said:

    Same plan
    Hi Carlene,
    It is interesting to hear the approach you are taking. My story is very similar. I had 8 rounds of carb/taxo, then my doctor gave me the year of taxol as a choice. He wants me to have 12 treatments. I know some docs don't believe in this, so it makes the choice hard.
    I do feel some comfort in that I am being watched all the time. I get chemo every 21 days and get a CA125 each month.
    When you says that most recurr after 12 months, is that from initial diagnosis or from the end of the initial chemo? I have been kind of avoiding stats, makes me sad. It was kind of funny that my CA125 actually did drop a tad after I started the lower dose. My baseline is now 5, which doesn't give me much downward mobility!
    By the way, my hair started to grow back while on the lower dose. I have never had short hair, but I could go without a wig now and not look too weird. I also got my eyebrows back, too:)
    Best of luck to you. 'Hope all goes well. I get a reaction the day after, my face gets gets red and swells, but then it is gone the next day.

    Thanks for sharing, Froggy

    The recurrance stats are
    The recurrance stats are from the end of last treatment, Froggy.

    Many of us seem to be on similar protocols. One thing my doctor does not do is "second look" surgeries. He does not believe that eyeballing the inside of the patient is really all that beneficial and may cause significant problems. Adhesions and scar tissue can be a real issue for some people, and the more times they open you up, the more scar tissue you are likely to form.

    He's not big on IP chemo, either, much to my dismay. I really wanted to do the "belly wash", but he says I got the same results without all the side effects.

    If I suffered from neuropathy side effects, I would not have signed on for this. Nerve damage can be not only painful, but permanent, as well. Be sure you alert your doctors to tingling/loss of feeling in your feet and/or hands.

    I can definitely understand wanting your life back. I hate having to plan everything around chemo treatments and lab work. I think my decision has a lot to do with my personality. Give the choice between doing something and waiting to see what happens, I will always opt to "do something" - not always the wisest choice.

    Carlene
  • msfanciful
    msfanciful Member Posts: 559
    #9
    Hissy_Fitz said:

    The recurrance stats are
    The recurrance stats are from the end of last treatment, Froggy.

    Many of us seem to be on similar protocols. One thing my doctor does not do is "second look" surgeries. He does not believe that eyeballing the inside of the patient is really all that beneficial and may cause significant problems. Adhesions and scar tissue can be a real issue for some people, and the more times they open you up, the more scar tissue you are likely to form.

    He's not big on IP chemo, either, much to my dismay. I really wanted to do the "belly wash", but he says I got the same results without all the side effects.

    If I suffered from neuropathy side effects, I would not have signed on for this. Nerve damage can be not only painful, but permanent, as well. Be sure you alert your doctors to tingling/loss of feeling in your feet and/or hands.

    I can definitely understand wanting your life back. I hate having to plan everything around chemo treatments and lab work. I think my decision has a lot to do with my personality. Give the choice between doing something and waiting to see what happens, I will always opt to "do something" - not always the wisest choice.

    Carlene

    When/Why is One Offered Maintenance Treatments?
    Hi Carlene,

    I'm glad I saw your post because it brings to mind this question?

    How long (or how many times) had you received your traditional chemo-treatments before you were offered this "maintenance treatments?".

    I am currently on my 3rd chemo-treatment (oral medication called etoposide). Are there a specific number of treatments you would have had to received before being offered the maintenance treatments?

    I guess I'm asking because this just may be a road I may have to travel as well...it just all depends.

    I was in remission for 13months after my first chemo of carbo/taxol.

    Then my second chemo was doxil/carbo/avastin and I remained in remission for only 6 months.

    I am now on my third round of chemo.

    I will actually go in for labs this morning which is why I'm still awake. I always get anxious before my appointments.

    Thanks a million if you have an idea.

    Sharon
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #10
    Great Success Stories
    Hi Carlene, I know several women who have made this decision and have amazing success stories; as far as the hair spring/summer is on the way and it is a great to be bald. :-)

    Hugs Bonnie
  • NCEllen
    NCEllen Member Posts: 115
    #11
    BonnieR said:

    Great Success Stories
    Hi Carlene, I know several women who have made this decision and have amazing success stories; as far as the hair spring/summer is on the way and it is a great to be bald. :-)

    Hugs Bonnie

    The second look
    I truly believe I would have opted for the Taxol follow-up if I hadn't had to have a follow-up surgery. Not only did I have my ileostomy reversed, but I had a major abdominal wound revision that wasn't healing for the past 7 months. That's where the look and see came in. Point is - while he was messing around in there, the biopsies and washings were taken and I had a positive result. Prior to the reversal he told me to be prepared for follow-up chemo since he couldn't guarantee what he would find even though my numbers were low.

    I also asked why women don't get the 2nd look surgery and he explained the same with the complicatons resulting from another major surg. plus scar tissue etc. Of course that makes perfect sense. I'm scared of another bowel obstruction so I still eat sometimes like I still have the ostomy.

    I was also told of the extended period of remission after Taxol too which was a hopeful forward option, so it was hard to decide. I discussed the taxol treatment with my family after reading the study itself and also knowing what was found after my surgery.

    I'm pretty sure that when my numbers start to go back up, even within normal limits my onc. will not wait to get me back in treatment. Not sure when he would order a CT, but I would bet that after two elevations (or even one) he would check it out. I wonder if they would still consider just using the taxol at that time? Guess I will find out.

    I think it's wonderful that we can stay on top of things for as long as there are options and reading from this board there are many out there and new studies all of the time. My next wig will have to mimic the short hair I have now. My last one was longer light brown with bangs. I was hoping, but Loreal did not permanently affect my roots afterall.
    Here's to a little warmer weather today - Ellen
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #12
    NCEllen said:

    The second look
    I truly believe I would have opted for the Taxol follow-up if I hadn't had to have a follow-up surgery. Not only did I have my ileostomy reversed, but I had a major abdominal wound revision that wasn't healing for the past 7 months. That's where the look and see came in. Point is - while he was messing around in there, the biopsies and washings were taken and I had a positive result. Prior to the reversal he told me to be prepared for follow-up chemo since he couldn't guarantee what he would find even though my numbers were low.

    I also asked why women don't get the 2nd look surgery and he explained the same with the complicatons resulting from another major surg. plus scar tissue etc. Of course that makes perfect sense. I'm scared of another bowel obstruction so I still eat sometimes like I still have the ostomy.

    I was also told of the extended period of remission after Taxol too which was a hopeful forward option, so it was hard to decide. I discussed the taxol treatment with my family after reading the study itself and also knowing what was found after my surgery.

    I'm pretty sure that when my numbers start to go back up, even within normal limits my onc. will not wait to get me back in treatment. Not sure when he would order a CT, but I would bet that after two elevations (or even one) he would check it out. I wonder if they would still consider just using the taxol at that time? Guess I will find out.

    I think it's wonderful that we can stay on top of things for as long as there are options and reading from this board there are many out there and new studies all of the time. My next wig will have to mimic the short hair I have now. My last one was longer light brown with bangs. I was hoping, but Loreal did not permanently affect my roots afterall.
    Here's to a little warmer weather today - Ellen

    2nd look
    I too had a second look with my illeostomy reversal. At that point I had an IP port placed and recv'd 3 rounds of IP cisplat/taxol. My biopsies at the second look were all clear. My ca25 jumped slowly and was still within normal range when I restarted chemo for my first reoccurence after an 8month remission. My reoccurence was confirmed by a colonoscopy and biopsy.

    I too feared the dreaded bowel obstruction after my illeostomy reversal. Getting things back to normal took a few months. It's been one year since my reversal and I still have episodic diarrhea and constipation.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #13
    msfanciful said:

    When/Why is One Offered Maintenance Treatments?
    Hi Carlene,

    I'm glad I saw your post because it brings to mind this question?

    How long (or how many times) had you received your traditional chemo-treatments before you were offered this "maintenance treatments?".

    I am currently on my 3rd chemo-treatment (oral medication called etoposide). Are there a specific number of treatments you would have had to received before being offered the maintenance treatments?

    I guess I'm asking because this just may be a road I may have to travel as well...it just all depends.

    I was in remission for 13months after my first chemo of carbo/taxol.

    Then my second chemo was doxil/carbo/avastin and I remained in remission for only 6 months.

    I am now on my third round of chemo.

    I will actually go in for labs this morning which is why I'm still awake. I always get anxious before my appointments.

    Thanks a million if you have an idea.

    Sharon

    Sharon....
    I had six
    Sharon....

    I had six sessions of Carbo/Taxol, starting shortly after my surgery. I'm not sure, but I think this protocol -low dose Taxol- is almost always utilized after first line chemo is finished and only if the patient is NED.

    I don't believe the reduced dosage Taxol is considered "treatment" - just something to (hopefully) keep the cancer at bay. If you have actual signs of recurrance/active disease, you probably need something stronger.
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #14
    Hissy_Fitz said:

    Sharon....
    I had six
    Sharon....

    I had six sessions of Carbo/Taxol, starting shortly after my surgery. I'm not sure, but I think this protocol -low dose Taxol- is almost always utilized after first line chemo is finished and only if the patient is NED.

    I don't believe the reduced dosage Taxol is considered "treatment" - just something to (hopefully) keep the cancer at bay. If you have actual signs of recurrance/active disease, you probably need something stronger.

    curious to know......
    Do you know if the cancer comes back after low dose Taxol has been used would that mean Taxol will never be a treatment option for you in the future?
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #15
    nancy591 said:

    curious to know......
    Do you know if the cancer comes back after low dose Taxol has been used would that mean Taxol will never be a treatment option for you in the future?

    I think the Carbo/Taxol
    I think the Carbo/Taxol cocktail is often used for second line treatment (after recurrence), but not Taxol alone, and especially not at the reduced dosage I will be getting. This (low-dose Taxol monthly) really is not a "treatment plan"; it's just a back-up protocol, kind of like chicken soup. If you have no bad side effects, it can't hurt, and it might help push back a recurrence. As far as I know, no doctors claim it will prolong your life. The study was never completed and they just don't know.

    If I am in remission (knock on wood) and it comes back later, I want the most aggressive treatment I can find.

    My Plan B is to go to MD Anderson Cancer Center in Houston if I have a recurrence in less than a year. I don't have a plan beyond a year, but I will work on one as the Taxol treatments proceed.

    Carlene

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