No more carbo - what next?

zenmama

Feeling low today for two reasons:   Had taxol/carbo yesterday and carbo always seems to lay me low.  It just makes me feel worse than taxol alone (I have taxol alone on weeks two and three, carbo/taxol on week one).  I had two more cycles to go of six carbo/taxol, but yesterday had an allergic reaction and won't be able to continue on the carbo.  So now I am wondering what is next and feeling discouraged.  I'm going to make notes on the side effects of all the other drugs that might be offered to me as next lines so I am informed when I go in to see my Dr. next in two weeks.  I was really pinning my hopes on completing the carbo/taxol regime as it had reduced my CA125 by a lot (from 11,000 down to 1200 over three treatments - I was hoping it would go down to "normal" levels after three more treatments), and had greatly reduced the size of the tumours in my liver.  Anyway, I guess I am feeling fearful.  I did notice that my mood was pushed lower after each carbo treatment (compared to just taxol), but today it is even lower....  I'm going to be poring over these posts about experiences with various drugs.  Still working on following my own advice to look where I want to go, not where I fear...

 

seatown

Lots of other drugs

Sorry that I can't keep everybody's history in mind, especially with all the screen names. So if what I say is redundant or misses the point about what you have said before, excuse me.

Just a couple of comments. First, if your experience is like mine, you can expect the lingering effects of carbo/taxol to continue for a little while even after you've had your last infusion. So your CA125 may still descend some. Second, I'll repeat what my oncologist said to me when the 2nd or 3rd chemo drug had to be discontinued: "We have lots of other drugs to choose from."

I'd refer you to the Natl Comprehensive Cancer Network's guidelines if you haven't already studied them. This reference is the product of a group of the leading U.S. cancer treatment centers, & I've found it very useful over the years. Here is the link to the ovarian cancer patient guidelines:

http://www.nccn.org/patients/guidelines/ovarian/index.html

You can go to the appropriate pages in these guidelines--whether you are newly diagnosed, experiencing a recurrence, etc.--& see what the treatment options, including chemo drugs, are.

I have a very rare cancer, primary peritoneal cancer, which is treated like ovarian cancer. Should you be interested, I've written about my experiences on different chemo drugs at 

http://CaringBridge.org/visit/CaroleSeaton

Good luck!

 

 

wholfmeister

So sorry!

I'm sorry you are feeling low.  Don't be hard on yourself...give your self some time to recover.

My experience was somewhat similar, with a reaction to carbo during the second month of a six month plan.  I also was bummed, as my personal opinion is the carbo kicks the cancer the hardest.  

From there we went to Gemzar, Avastin, Doxil, and now Topotecan.  I have had very few negative reactions beyond some fatigue and very seldom, some nausea or vomiting.  I must be fairly hardy by nature!  but the one that nearly killed me was Doxil.  

My reaction was extreme, well beyond normal, so don't let my story scare you out of taking it.  I only got two doses, not enough to tell if it was doing anything to the cancer.  Haha! You can't assume if it kills me that is killing my cancer!  My reaction was painful, deep, deep blisters on hands, feet, armpits, crotch, groin, behind ears, under breasts, butt crack, in the creases of my fat rolls, in my nose and mouth, and down my throat.  I was off work for 5 1/2 weeks and in a wheel chair for three.

I am still in a similar position as you, since the Topotecan is not working.  I don't know what is next for me.  Seatown gave an excellent reference, and Alexandra has great references for trials.

Chin up! We're still alive and still fighting!

Veranos

densensitization

I had an allergic reaction to carbo and went through densensitization, which allowed me to continue the drug.  Have you checked into this?

zenmama

Veranos said:

densensitization

I had an allergic reaction to carbo and went through densensitization, which allowed me to continue the drug.  Have you checked into this?

Thank you

Thank you Veranos, Seatown, and Wholfmeister,

I haven't heard of desensitization, but I will ask about it.  I am in Canada, on the east coast, and options seem to be quite limited. 

T

zenmama

seatown said:

Lots of other drugs

Sorry that I can't keep everybody's history in mind, especially with all the screen names. So if what I say is redundant or misses the point about what you have said before, excuse me.

Just a couple of comments. First, if your experience is like mine, you can expect the lingering effects of carbo/taxol to continue for a little while even after you've had your last infusion. So your CA125 may still descend some. Second, I'll repeat what my oncologist said to me when the 2nd or 3rd chemo drug had to be discontinued: "We have lots of other drugs to choose from."

I'd refer you to the Natl Comprehensive Cancer Network's guidelines if you haven't already studied them. This reference is the product of a group of the leading U.S. cancer treatment centers, & I've found it very useful over the years. Here is the link to the ovarian cancer patient guidelines:

http://www.nccn.org/patients/guidelines/ovarian/index.html

You can go to the appropriate pages in these guidelines--whether you are newly diagnosed, experiencing a recurrence, etc.--& see what the treatment options, including chemo drugs, are.

I have a very rare cancer, primary peritoneal cancer, which is treated like ovarian cancer. Should you be interested, I've written about my experiences on different chemo drugs at 

http://CaringBridge.org/visit/CaroleSeaton

Good luck!

 

 

Small-ish world....

Carole,

Thank you for sharing the link to your journal.  Here is something interesting:  I was looking  at your pictures and thought I recognized one of my first doctor:  Dr. Chambers, who was a Yale-New Haven before she went to Arizona.  She is the one who did my initial surgery and diagnosed me!

Tracy

Ro10

zenmama said:

Thank you

Thank you Veranos, Seatown, and Wholfmeister,

I haven't heard of desensitization, but I will ask about it.  I am in Canada, on the east coast, and options seem to be quite limited. 

T

Zenmama, I am from the Uterine Board

I too had a severe reaction to carbo with my ninth treatment.  This  is where a lot of people react to carbo.  I was switched to cisplatin and have received 10 treatments of it with no reaction. The cisplatin worked as good as the carbo on reducing my marker. .This may be a possibility for you.  The Cisplatin is harder on the kidneys, so hydration is given before and after the cisplatin.  I am still able to receive the taxol/ cisplatin, so that will be my cocktail when I need chemo again.  I hope you get a chemo that works for you with no severe side effects.  In peace and caring.

seatown

zenmama said:

Small-ish world....

Carole,

Thank you for sharing the link to your journal.  Here is something interesting:  I was looking  at your pictures and thought I recognized one of my first doctor:  Dr. Chambers, who was a Yale-New Haven before she went to Arizona.  She is the one who did my initial surgery and diagnosed me!

Tracy

Small world

Yes, it is a small-ish world! I first met Dr. Chambers in 2008, when I had a uterine tumor that turned out to be benign & she was one of the doctors I met. Someone else performed my surgery then; but she was collecting data, including mine, for long-term research on the effects of birth control pills, as I recall. I saw her again last year for a 2nd opinion, just for my own peace of mind. It was reassuring to learn then that she concurred with my treatment to date. I start a new (to me) chemo drug--Gemzar--this week, but if that drug doesn't work out I will no doubt see Dr. Chambers again to hear what she has to add.

C.T.S.

kikz

Taxol

My onc just told me on Tuesday that I wouldn't have taxol anymore after that day because of neuropathy.  It kind of scares me because taxol along with carbo have gotten me to remission, well hopefully this is the third time.

 

Karen

zenmama

kikz said:

Taxol

My onc just told me on Tuesday that I wouldn't have taxol anymore after that day because of neuropathy.  It kind of scares me because taxol along with carbo have gotten me to remission, well hopefully this is the third time.

 

Karen

Taxol

Karen, I am sorry to hear that as I think I know exactly how you are feeling, since that is where I was last week. (I have been wondering about taxol too.  I was wandering how much numbness is too much... ) I guess we just have to think positively about the next drug on the cocktail list.  This is my third go-round on chemo, so I have had quite a bit of both carbo and taxol.   It is scary to to told you have to get off what you believe to be working and also what you are somewhat used to dealing with, even if it is not all that pleasant.

I guess I am going to be starting cisplatin in a couple of weeks instead of carbo.  I am a little scared as I believe it is harder to tolerate (and I was already having a hard time), and is hard on the kidneys.  Plus it seems that my chemo is stretching indefinitely into the future.....  I have not spoken to the doctor yet, this is what I got from the chemo nurse based on what she sees in the system.  My doctor already put in the orders for the cisplatin.  I had it in my head that I would be done in 8 weeks, although really I was wondering what that would mean since my CA 125 is still high and there are still visible tumours, so that was an unrealistic dream anwyay....

Hopefully you have indeed gotten all the taxol you needed into your system for this third remission, if I have understood correctly from your message that this is your third remission.

I have taken a couple of days off from thinking too much.  I was getting really down - I really need to stick my head in the stand once in a while to stay sane.  Another 12 days and I will face the cisplatin.  I trust your doctor will suggest a good alternative for you, or maybe give you a break for a bit....

 

 

zenmama

Ro10 said:

Zenmama, I am from the Uterine Board

I too had a severe reaction to carbo with my ninth treatment.  This  is where a lot of people react to carbo.  I was switched to cisplatin and have received 10 treatments of it with no reaction. The cisplatin worked as good as the carbo on reducing my marker. .This may be a possibility for you.  The Cisplatin is harder on the kidneys, so hydration is given before and after the cisplatin.  I am still able to receive the taxol/ cisplatin, so that will be my cocktail when I need chemo again.  I hope you get a chemo that works for you with no severe side effects.  In peace and caring.

Thank you

Thank you for your message Ro10.  It does look like I am going to be getting cisplatin, at least based on what the chemo nurse has seen in the system are my next orders.  I am a bit nervous as I understand it is harder to tolerate than the carbo, and carbo was already making me a pretty miserable camper (not that taxol on the weeks I have it leaves me feeling very chipper either).  I only have one kidney, so the extra damage there is worrying - but I trust the doctor, and I imagine the cancer would wreak havoc there since it is already right next door in the liver anyway, so might as well be the drug.... 

Thank you again.

 

Susan P

zenmama said:

Taxol

Karen, I am sorry to hear that as I think I know exactly how you are feeling, since that is where I was last week. (I have been wondering about taxol too.  I was wandering how much numbness is too much... ) I guess we just have to think positively about the next drug on the cocktail list.  This is my third go-round on chemo, so I have had quite a bit of both carbo and taxol.   It is scary to to told you have to get off what you believe to be working and also what you are somewhat used to dealing with, even if it is not all that pleasant.

I guess I am going to be starting cisplatin in a couple of weeks instead of carbo.  I am a little scared as I believe it is harder to tolerate (and I was already having a hard time), and is hard on the kidneys.  Plus it seems that my chemo is stretching indefinitely into the future.....  I have not spoken to the doctor yet, this is what I got from the chemo nurse based on what she sees in the system.  My doctor already put in the orders for the cisplatin.  I had it in my head that I would be done in 8 weeks, although really I was wondering what that would mean since my CA 125 is still high and there are still visible tumours, so that was an unrealistic dream anwyay....

Hopefully you have indeed gotten all the taxol you needed into your system for this third remission, if I have understood correctly from your message that this is your third remission.

I have taken a couple of days off from thinking too much.  I was getting really down - I really need to stick my head in the stand once in a while to stay sane.  Another 12 days and I will face the cisplatin.  I trust your doctor will suggest a good alternative for you, or maybe give you a break for a bit....

 

 

no more carbo

Hi Zenmamma I was almost finished my year of foirstline tx with Carbo/taxol & responding tremendously from 4,000 to 16 CA 125 .  had about 4 tx's left when I had my reaction to carbo apparently the effects are cumulative. so reaction is around 8th or 9th tx.

 

 

I was soo mad & scared about not being alke to continue tx protocol -- after all I was responding so well!  my Onc wasn'ttthat worried as I was nearly done -- so she finished my tx with taxol only.  as all the gals say - it is a very exprcted common occurence. so the gyne oncs have a plan knowing what drugs ti use instead.

 

Susan P from southern Alberta &T X& WY

zenmama

Susan P said:

no more carbo

Hi Zenmamma I was almost finished my year of foirstline tx with Carbo/taxol & responding tremendously from 4,000 to 16 CA 125 .  had about 4 tx's left when I had my reaction to carbo apparently the effects are cumulative. so reaction is around 8th or 9th tx.

 

 

I was soo mad & scared about not being alke to continue tx protocol -- after all I was responding so well!  my Onc wasn'ttthat worried as I was nearly done -- so she finished my tx with taxol only.  as all the gals say - it is a very exprcted common occurence. so the gyne oncs have a plan knowing what drugs ti use instead.

 

Susan P from southern Alberta &T X& WY

Thank you Susan

Thank you Susan, very encouraging.

 

Tracy