Taxol maintenance number 11....and 1 to go

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I had Taxol consolidation number 11 today, plus spoke to my doctor about "stuff" in general. I asked him why he said, last visit, that I was probably his last patient to get the 12 months of Taxol. He said because the "newest" trend is to give Avastin as maintenance, or to recommend only "wait and see". Avastin is iffy because of insurance issues. They won't start a course of Avastin without a commitment from the insurance carrier to pay for it. I asked about doing another six months of Taxol and he said the same thing - the insurance company might want to see some kind of documentation that said that was a proven treatment, or they might refuse to pay for it - after the fact. Everything seems to be about money. How sad is that?

Of course, there is no proof that more is better - even though I have done very well this past year. I might have done just as well with no additional treatment. We will never know.

He said the same thing is beginning to be true for IP chemo. He is doing less and less of it. There are studies that show it helps patients stay NED for longer, but they are all small studies (he said) and there are some serious risks. "We've lost a few kidneys, for one thing," he said. "It's a very, very toxic treatment and there are still plenty of women who get IP and still have a shorter remission than you have had."

It wasn't all nuts and bolts. We talked about iPads and eReaders, too.

Chemo went well. I slept thru most of it. Bob brought me Wing Stop (yum!) and stopped for Starbucks on the way home. What more could a girl ask for?

Carlene
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Comments

  • Mwee
    Mwee Member Posts: 1,338
    Dear Carlene
    I'm so very pleased for you that this long taxol maintenance series is almost over! I remember when you were just starting it. Yes, it is more than sad that insurance companies can be the source that decides our treatments. Wings/Starbucks/NED & only one more treatment to go..... indeed, what more could a girl ask for :)
    (((HUGS))) Maria
  • nancy591
    nancy591 Member Posts: 1,027 Member
    good for you!
    Glad you were able to tolerate it and your ca125 stayed stable. Good luck moving forward with your release from parole!! Happy hair growing!!
  • clamryn
    clamryn Member Posts: 508
    That is great
    Hi Carlene, That is awesome. You have it "made in the shade".

    You mentioned the Avastin, I am going through the problems of the insurance carrier covering it right now. Anyone who is still covered through their place of employment can appeal to their HR representative. The company can override it if they are willing to do so. I do know that you first have to start with a predetermination letter.

    Carlene you have been such an inspiration to me and also with sharing everything.

    Wow can you believe you only have one more. Way to go.

    (((Hugs))))
    Linda
  • Sandy10
    Sandy10 Member Posts: 80
    CONGRATS!!
    Carlene,

    I am pretty new to this board and wanted to thank you for your posts. you have been an inspiration to me since I found this board! All of you have. I am so happy that you are almost through with your treatment!

    I had the IP chemo and can tell you that it was VERY difficult to get through. I did all the infusions and now i think a lot of my issues are because of it. I wouldn't change it though. I am NED and am glad that My doctor and I chose the most agressive treatment. My insurance compant didn't have an issue with the IP chemo though. thye had an issue with, of all things, Zofran. I was allergic to the other meds and needed zofran. The insurance company had to have a letter that showed "medically necessary" reasons why i had to have it. When did insurance companies decide they know better than the doctors?

    So glad that you enjoyed your wings and starbucks!!! Happy last infusion and here's to a new and happy NED year to you!!!!!!

    Sandy
  • beth1465
    beth1465 Member Posts: 63 Member
    I know you are so ready to
    I know you are so ready to be done! My MD won't do maintenance drugs. He said he doesn't feel the outcome is any better than just waiting until CA-125 starts to rise again. Well I'm still looking at probably another 4 mos on Gemzar, and I can't wait to be done! So, I'm jealous but very happy for you!

    Beth
  • beth1465 said:

    I know you are so ready to
    I know you are so ready to be done! My MD won't do maintenance drugs. He said he doesn't feel the outcome is any better than just waiting until CA-125 starts to rise again. Well I'm still looking at probably another 4 mos on Gemzar, and I can't wait to be done! So, I'm jealous but very happy for you!

    Beth

    The mind boggles!!!!
    Reading through all your posts draws me to the conclusion, that the docs don't have a clue what is best!!!! It's such a shame that this beast is so difficult to understand and treat in the best way possible , it just is not logical.
    When mum was first diagnosed, I was straight on the net and after researching thought IP chemo would be the way to go , logical? Target the chemo straight at it, makes sense hey? But now doctors are not sure .And reading about maintenance logically, you would think it would prevent it from coming back. But as Carlene says has she done any better or not? No one will ever know.
    It is such a winding road, with so many uncertainties and not much sense, this bloody cancer is a cow bag, I hate it.
  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    12 is the magic number
    congrats to you Carlene i know it has beeb a long year for you. Go on a long vacation and have some fun when you can travel. Enjoy your freedom. Keep us posted in 2011
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    Taxol maintanance
    Hi Carlene as I know you are a bit of a whizz with your reasearch etc, I was hoping you could send me some data or studies on Taxol maintanance. I am back on carbo/taxol as you may know and I suggested your maintance regime to him and he appeared to have never heard of it. So I thought if I presented him with solid evidence of research he might consider it for me in the future.

    Thanks Tina x
  • nancy591
    nancy591 Member Posts: 1,027 Member
    maintenance
    Carlene,
    If you are interested in doing "something" there is a clinical trial for women in remission and partial remission. It is a vaccine. I don't know anything more about it. I would have qualified for the partial remission one a year ago but now I am passed that stage!!

    Here is a link from Memorial SLoan:
    http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-184

    I assume they would have it in other parts of the country as well.

    For women in their 2nd and 3rd remission there is a different trial:
    http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=10-099
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    nancy591 said:

    maintenance
    Carlene,
    If you are interested in doing "something" there is a clinical trial for women in remission and partial remission. It is a vaccine. I don't know anything more about it. I would have qualified for the partial remission one a year ago but now I am passed that stage!!

    Here is a link from Memorial SLoan:
    http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=09-184

    I assume they would have it in other parts of the country as well.

    For women in their 2nd and 3rd remission there is a different trial:
    http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=10-099

    Wow...thanks, Nancy. I am
    Wow...thanks, Nancy. I am definitely interested and will look into this.

    Carlene
  • froggy1
    froggy1 Member Posts: 205
    Be a good statistic!
    Hi Carlene,
    I so hope you are one of the "lucky ones." I, too, did the same treatment. Four months after the end of maintenance the cancer returned. I'm now on carbo-doxil. I have no idea if the maintenance worked or didn't work. I may have been in remission anyway. If I count the time I finished my first treatment and was NED, it was about 20 months.
    I must add that the idea of a CA125 of 35 being "normal," as was mentioned somewhere on another post, is not true.
    Each person is unique and it is based on trends. My baseline was a low 5, but when it went to 10, it was not a good thing. When the cancer showed up on the PET scan, my count was "only" 16. You would think that would be good-NOT....My onco didn't even think the cancer was back and was looking for another bowel obstruction. I knew in my heart it was back.
    This recurrence has really put me in a funk. I had about four months of no chemo, now I'm back to the races again.
    May you be NED forever.
    Ginny
  • nancy591
    nancy591 Member Posts: 1,027 Member
    froggy1 said:

    Be a good statistic!
    Hi Carlene,
    I so hope you are one of the "lucky ones." I, too, did the same treatment. Four months after the end of maintenance the cancer returned. I'm now on carbo-doxil. I have no idea if the maintenance worked or didn't work. I may have been in remission anyway. If I count the time I finished my first treatment and was NED, it was about 20 months.
    I must add that the idea of a CA125 of 35 being "normal," as was mentioned somewhere on another post, is not true.
    Each person is unique and it is based on trends. My baseline was a low 5, but when it went to 10, it was not a good thing. When the cancer showed up on the PET scan, my count was "only" 16. You would think that would be good-NOT....My onco didn't even think the cancer was back and was looking for another bowel obstruction. I knew in my heart it was back.
    This recurrence has really put me in a funk. I had about four months of no chemo, now I'm back to the races again.
    May you be NED forever.
    Ginny

    ca125
    When my recurrence was confirmed my ca125 was at 10. I had one area on my colon. I started that January of 2010. Since then I've been on Doxil, Gemzar/Carbo, Gemzar alone and a clinical trial. Since restarting chemo in January of 2010 I've had no regression of the cancer but only growth. Not much growth. While I Doxil I developed new areas. Over the past 6 months or so I haven't developed any news areas but the areas I have grew slightly. Is it possible that over the past year the chemo slowed the cancer down? I guess I'll never know. Looking back I wish I would have waited until I became symptomatic before starting chemo again. I thought well the area is really small so the chemo will knock it right out. Boy was I wrong.
  • zinaida
    zinaida Member Posts: 221
    nancy591 said:

    ca125
    When my recurrence was confirmed my ca125 was at 10. I had one area on my colon. I started that January of 2010. Since then I've been on Doxil, Gemzar/Carbo, Gemzar alone and a clinical trial. Since restarting chemo in January of 2010 I've had no regression of the cancer but only growth. Not much growth. While I Doxil I developed new areas. Over the past 6 months or so I haven't developed any news areas but the areas I have grew slightly. Is it possible that over the past year the chemo slowed the cancer down? I guess I'll never know. Looking back I wish I would have waited until I became symptomatic before starting chemo again. I thought well the area is really small so the chemo will knock it right out. Boy was I wrong.

    Sorry,Nancy! Can surgery be
    Sorry,Nancy! Can surgery be done to take it out from that areas? (((HUGS))), Zina
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    froggy1 said:

    Be a good statistic!
    Hi Carlene,
    I so hope you are one of the "lucky ones." I, too, did the same treatment. Four months after the end of maintenance the cancer returned. I'm now on carbo-doxil. I have no idea if the maintenance worked or didn't work. I may have been in remission anyway. If I count the time I finished my first treatment and was NED, it was about 20 months.
    I must add that the idea of a CA125 of 35 being "normal," as was mentioned somewhere on another post, is not true.
    Each person is unique and it is based on trends. My baseline was a low 5, but when it went to 10, it was not a good thing. When the cancer showed up on the PET scan, my count was "only" 16. You would think that would be good-NOT....My onco didn't even think the cancer was back and was looking for another bowel obstruction. I knew in my heart it was back.
    This recurrence has really put me in a funk. I had about four months of no chemo, now I'm back to the races again.
    May you be NED forever.
    Ginny

    Ginny....
    I am doing my best

    Ginny....

    I am doing my best (to be a "good" statistic). That's why I am going to look into the clinical trial Nancy mentioned. I hate waiting for the other shoe to drop.

    Carlene
  • froggy1
    froggy1 Member Posts: 205

    Ginny....
    I am doing my best

    Ginny....

    I am doing my best (to be a "good" statistic). That's why I am going to look into the clinical trial Nancy mentioned. I hate waiting for the other shoe to drop.

    Carlene

    I think it would be really helpful if someone who is in the know would post some info about clinical trials. I am confused about the whole process. If you are not at a major teaching institution, I assume you have to research all these yourself??? I know my Doc does have a team that does trials, but I am not sure which ones they will put you into. And, what about the different phases? I was going to go into one, but they didn't allow PET scans, so my Doc nixed it. I assume you have to travel to where the trial is????
    Any info would be appreciated. I would wish that with all we have to deal with, the Docs could handle this, but I am assuming this is not the case... Ginny
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    froggy1 said:

    I think it would be really helpful if someone who is in the know would post some info about clinical trials. I am confused about the whole process. If you are not at a major teaching institution, I assume you have to research all these yourself??? I know my Doc does have a team that does trials, but I am not sure which ones they will put you into. And, what about the different phases? I was going to go into one, but they didn't allow PET scans, so my Doc nixed it. I assume you have to travel to where the trial is????
    Any info would be appreciated. I would wish that with all we have to deal with, the Docs could handle this, but I am assuming this is not the case... Ginny

    Ginny....
    Most doctors have

    Ginny....

    Most doctors have staff people who research clinical trials in their area. Since you have to travel to where the trial is, most doctors do not refer their patients to trials clear across the country. I fly for free (my husband is retired from a major airline) and I have in-laws in the NE that I can stay with, if needed, and that is why I called SK this AM.

    Check out www.clinicaltrials.gov and search under "ovarian". They have all the trials listed on that one site.

    PS...I missed the nurse's call back this afternoon and now have to wait until tomorrow to see if I qualify. She had to ask Dr Santini if he would take me or not, because of the Taxol maintenance I've been on. If they give me the red light, I am NY bound.

    Carlene
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Ginny....
    Most doctors have

    Ginny....

    Most doctors have staff people who research clinical trials in their area. Since you have to travel to where the trial is, most doctors do not refer their patients to trials clear across the country. I fly for free (my husband is retired from a major airline) and I have in-laws in the NE that I can stay with, if needed, and that is why I called SK this AM.

    Check out www.clinicaltrials.gov and search under "ovarian". They have all the trials listed on that one site.

    PS...I missed the nurse's call back this afternoon and now have to wait until tomorrow to see if I qualify. She had to ask Dr Santini if he would take me or not, because of the Taxol maintenance I've been on. If they give me the red light, I am NY bound.

    Carlene

    omg
    Dr. Sabbatini I'm sure. He is my oncologist and he is running that particular trial. Wouldnt' that be awesome if you, Lisa and I could meet up?!
  • froggy1
    froggy1 Member Posts: 205

    Ginny....
    Most doctors have

    Ginny....

    Most doctors have staff people who research clinical trials in their area. Since you have to travel to where the trial is, most doctors do not refer their patients to trials clear across the country. I fly for free (my husband is retired from a major airline) and I have in-laws in the NE that I can stay with, if needed, and that is why I called SK this AM.

    Check out www.clinicaltrials.gov and search under "ovarian". They have all the trials listed on that one site.

    PS...I missed the nurse's call back this afternoon and now have to wait until tomorrow to see if I qualify. She had to ask Dr Santini if he would take me or not, because of the Taxol maintenance I've been on. If they give me the red light, I am NY bound.

    Carlene

    great news
    Wow Carlene,
    That is very encouraging. You sure do work quickly! BUT, don't you want to get a green light, not a red one? LOL
    Good luck! Ginny
  • froggy1
    froggy1 Member Posts: 205

    Ginny....
    Most doctors have

    Ginny....

    Most doctors have staff people who research clinical trials in their area. Since you have to travel to where the trial is, most doctors do not refer their patients to trials clear across the country. I fly for free (my husband is retired from a major airline) and I have in-laws in the NE that I can stay with, if needed, and that is why I called SK this AM.

    Check out www.clinicaltrials.gov and search under "ovarian". They have all the trials listed on that one site.

    PS...I missed the nurse's call back this afternoon and now have to wait until tomorrow to see if I qualify. She had to ask Dr Santini if he would take me or not, because of the Taxol maintenance I've been on. If they give me the red light, I am NY bound.

    Carlene

    great news
    Chemo brain?
  • kayandok
    kayandok Member Posts: 1,202 Member

    Ginny....
    Most doctors have

    Ginny....

    Most doctors have staff people who research clinical trials in their area. Since you have to travel to where the trial is, most doctors do not refer their patients to trials clear across the country. I fly for free (my husband is retired from a major airline) and I have in-laws in the NE that I can stay with, if needed, and that is why I called SK this AM.

    Check out www.clinicaltrials.gov and search under "ovarian". They have all the trials listed on that one site.

    PS...I missed the nurse's call back this afternoon and now have to wait until tomorrow to see if I qualify. She had to ask Dr Santini if he would take me or not, because of the Taxol maintenance I've been on. If they give me the red light, I am NY bound.

    Carlene

    Carlene,
    this is exciting, keep us posted. I like the way you move!
    k:)