Taxol maintenance number 11....and 1 to go
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
Comments
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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))) Maria0 -
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))))
Linda0 -
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!!!!!!
Sandy0 -
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!
Beth0 -
The mind boggles!!!!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
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.0 -
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 20110 -
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 x0 -
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=10-0990 -
Wow...thanks, Nancy. I amnancy591 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 definitely interested and will look into this.
Carlene0 -
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.
Ginny0 -
ca125froggy1 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
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.0 -
Sorry,Nancy! Can surgery benancy591 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 done to take it out from that areas? (((HUGS))), Zina0 -
Ginny....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
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.
Carlene0 -
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????Hissy_Fitz said: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
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... Ginny0 -
Ginny....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
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.
Carlene0 -
omgHissy_Fitz said: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
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?!0 -
great newsHissy_Fitz said: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
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! Ginny0 -
great newsHissy_Fitz said: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
Chemo brain?0 -
Carlene,Hissy_Fitz said: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
this is exciting, keep us posted. I like the way you move!
k:)0
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