Scans were bad... so scared...,.

mom2greatkids

Hi Ladies.

 

I received my scans from yesterday this morning.  There has been significant change in my abdominal area.  A mantle of lymph nodes the report read.  My doctor said we are in a tough spot.  He stopped Doxil and started Topotecan today.  On a positive note, so far my vital organs are still clear.

 

I am just SO scared.  Has anyone else had this drug?  What were your side effects?  Did you have good results with it?

I just had a "gut" feeling that this scan was not going to be good.

Carla

scatsm

Dear Carla,

I know this is bad news but don't give up hope! One of my ovarian cancer support group buddies just had a third recurrence while using doxil and was switched to Topetecan. She has had good results. Ca125 down, and some fatigue, that's all. Hopefully itwill be thatcwAy for you too. Hang in there and come back often to let us know how you are. We are cheering you on from the board!!

all the best 

Susan

poopergirl14052

scatsm said:

Dear Carla,

I know this is bad news but don't give up hope! One of my ovarian cancer support group buddies just had a third recurrence while using doxil and was switched to Topetecan. She has had good results. Ca125 down, and some fatigue, that's all. Hopefully itwill be thatcwAy for you too. Hang in there and come back often to let us know how you are. We are cheering you on from the board!!

all the best 

Susan

Carla

I am sure your treatment will get get you to remission....yes it is scary. We are here to help you..don't give up..keep up the fight. I am on my third recurrance and still on chemo...so far so good.Bless you and stay strong....Val 

2013-12-19

mom2greatkids

poopergirl14052 said:

Carla

I am sure your treatment will get get you to remission....yes it is scary. We are here to help you..don't give up..keep up the fight. I am on my third recurrance and still on chemo...so far so good.Bless you and stay strong....Val 

2013-12-19

I have only had one

I have only had one remission, which lasted following front line chemo for about four months.  Doxil kept me stable for several months.  Hoping this drug will do the job.

Alexandra

Dear Carla

With all my heart I hope that Topotecan works for you. I haven't had it myself but I read that it's generally causes mild fatigue and hair thinning and may or may not affect blood counts.

I hope this set back does not interfere with you enjoying Christmas and New Year's. Any special plans? Are your kids coming to visit?

Love,

Alexandra

lovesanimals

Alexandra said:

Dear Carla

With all my heart I hope that Topotecan works for you. I haven't had it myself but I read that it's generally causes mild fatigue and hair thinning and may or may not affect blood counts.

I hope this set back does not interfere with you enjoying Christmas and New Year's. Any special plans? Are your kids coming to visit?

Love,

Alexandra

Carla

I'm praying that the Topotecan kicks your cancer's butt!  I'm rooting for you and cheering you on from the sidelines.

Big hugs,

Kelly

seatown

I share your fears.

You are a bit ahead of me...but I have the same fears as you. (I have primary peritoneal cancer, which is similar to ovarian cancer & is treated just the same.) My CA-125 has been steadily rising since summer, & the Journal of Clinical Oncology says a low-level rise in CA-125 is predictive of recurrence. My CA-125 is now out of normal range, & I can sense in my doctors' comments that they expect recurrence. I have a CT scan scheduled for New Year's Eve, then see my surgeon on Jan. 2. If my fears are confirmed, I'll be interested to see what drugs they recommend for me & will be very interested to hear your progress. In the meantime--try to enjoy the holiday, & good luck & a great new year to all of us!

Mwee

Dear Carla

So sorry that you have to deal with this. Doxil didn't work for me either and Topotecan is next on the list for me when my current drug of a cisplatin/gemzar stops keeping me stable. The right chemo can work wonders and it's often a try and see approach till the right one kicks butt. Hang in there, girl. My current combo has kept me stable for the last four years. We're here for you.

                                                             ((((((HUGS))))))))   Maria

mom2greatkids

Mwee said:

Dear Carla

So sorry that you have to deal with this. Doxil didn't work for me either and Topotecan is next on the list for me when my current drug of a cisplatin/gemzar stops keeping me stable. The right chemo can work wonders and it's often a try and see approach till the right one kicks butt. Hang in there, girl. My current combo has kept me stable for the last four years. We're here for you.

                                                             ((((((HUGS))))))))   Maria

Doxil kept me stable for

Doxil kept me stable for about ten months.  Obviously, it stopped working.  Gemzar is next for me if this doesn't work.  My medical oncologist does not believe in repeating any drugs.  He said Avastin, Taxol, etc. all are off the table since they didn't work.  They did work for a while.  I"ll see how this goes, then perhaps seek a second opinion.  On a positive note, it's all still confined to lymph nodes.  Vital organs are still okay for now.  My dr. said I am plantin resistant, but aren't cistplatin and carbo the only plantin drugs used for OVCA?  He said taxtore won't help because it's a cousin to taxol.

 

I am amazed at how well you have done.  But boy this disease is a beast.

 

Thanks for everyone for your support and encouragement.

 

Carla

Cafewoman53

mom2greatkids said:

Doxil kept me stable for

Doxil kept me stable for about ten months.  Obviously, it stopped working.  Gemzar is next for me if this doesn't work.  My medical oncologist does not believe in repeating any drugs.  He said Avastin, Taxol, etc. all are off the table since they didn't work.  They did work for a while.  I"ll see how this goes, then perhaps seek a second opinion.  On a positive note, it's all still confined to lymph nodes.  Vital organs are still okay for now.  My dr. said I am plantin resistant, but aren't cistplatin and carbo the only plantin drugs used for OVCA?  He said taxtore won't help because it's a cousin to taxol.

 

I am amazed at how well you have done.  But boy this disease is a beast.

 

Thanks for everyone for your support and encouragement.

 

Carla

Carla

I just got my pet/ct scan results and they are similar to yours in the nodes but not on any organs. I was expecting much worse so I figure I won't be dying in the next six months. Sorry I can't help but think in terms of time.

i have been on chemo almost constantly since June of 2010, the last three didn't work as my numbers kept rising.But now I believe they worked some otherwise the cancer would be bigger my biggest spot was 3.6 cm . My doctor has put me back on a chemo that worked for me in the past and said there were many more things to try. I'm hoping this works Carbo / Gemzar and maybe I'll just have to stay on it. Don't give up, how do you feel?  I feel good except being tired from the chemo but slow and steady is good

if you feel like your doctor is giving up a second opinion would not be a bad idea,something could come out tomorrow to help us  we just have to be here to benefit from it.

Good Luck !

Colleen

mom2greatkids

Cafewoman53 said:

Carla

I just got my pet/ct scan results and they are similar to yours in the nodes but not on any organs. I was expecting much worse so I figure I won't be dying in the next six months. Sorry I can't help but think in terms of time.

i have been on chemo almost constantly since June of 2010, the last three didn't work as my numbers kept rising.But now I believe they worked some otherwise the cancer would be bigger my biggest spot was 3.6 cm . My doctor has put me back on a chemo that worked for me in the past and said there were many more things to try. I'm hoping this works Carbo / Gemzar and maybe I'll just have to stay on it. Don't give up, how do you feel?  I feel good except being tired from the chemo but slow and steady is good

if you feel like your doctor is giving up a second opinion would not be a bad idea,something could come out tomorrow to help us  we just have to be here to benefit from it.

Good Luck !

Colleen

Hi Colleen,
 
I feel well.

Hi Colleen,

 

I feel well.  Only some mild fatigue and mild constipation from the topotecan.  I really like my doctor.  (Medical oncologist).  However, he doesn't believe in repeating drugs.  He said gemzar is next, then one more he mentioned.   Hopefully it won't come down to seeking out a second opion, but I will if necessary.  I"m had carbo/taxol (6 rounds), cistplatin/taxol (3 rounds) and 11 rounds of doxil.  I've now had 2 of topotecan.  I do not have a gyn/onc. locally in my network.  I had to go 150 miles for surgery.  I hear of many women trying so many different combination.

 

Yeah, I do feel it is a positive that it isn't in any organs.  THere were just several more nodes this times,  He said it was a mantle.

 

Thanks for your encouragement.

 

Carla

kikz

I'm sorry

for what you are going through.  I hope that this drug does what it needs to do and is not too hard on you in the process.  As always we are here for you.  This has become a close band of friends.  If only we could all be closer so we could give each other the support we really need.  But I am grateful to have you all in my life which would be unbearable if you weren't.

Karen   

kimberly sue 63

Sorry to hear your news! 

Sorry to hear your news!  Keep fighting and make sure your diet consists of cancer fighting food such as kale, brussel sprouts blueberries, cabbage, tumeric!? Hang in there!!! Kim