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My sister's update and has anyone been on Topotecan? My sister's update and has anyone been on Topotecan?

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Unread 06-26-2006, 03:03 PM
My sister's update and has anyone been on Topotecan?

Hi all~

First, an update on what's been happening...

I finally have a free moment to post.
Just following my sister's surgery for recurrent OVCA, her daughter (30 yrs old) was admitted into the hospital in San Diego...far away from Hopkins where my sister was. A CT scan revealed a golf ball sized mass in her small intestine. Following her surgey to remove the mass and resection her bowel, the waiting game began again...this time for my niece. Needless to say, my sister was in total hysterics and not able to function (not good just following major surgery again) and I was the "go to" person, having to confer with doctors for her daughter in San Diego.
We just received the pathology report and all was benign, thank God.

Fast forward to an hour ago...
The drug resistant assay's that were performed on my sister's tumors show that the chemo, Topotecan (Hycamtin) should work well.
We are curious to know if anyone has been treated with this drug and what was your experience?

We have all had so much on our plate since my sister's recurrent DX, subsequent surgery and her daughter's surgery. I haven't known which way to turn, more importantly, I pray that my sister doesn't suffer too much with another round of chemo, yet again.
Her DR at Hopkins is also recommending radiation following her chemo as a "boost" to the area of her past surgery. Has anyone else had this experience with recurrent OVCA?

Again, while I haven't had a moment's time to be on the board (I hope and trust that everyone understands), all of you are in my thoughts and prayer's ALWAYS!

PS...please pardon my rambling, I am just so overwhelmed these days
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Unread 06-26-2006, 03:28 PM
My sister's update and has anyone been on Topotecan?

Hi Heni,
Wow...never a dull moment in your family.
Glad to hear that your sister and niece are doing well in spite of everything.
I have never been on Topotecan but I did discuss it with my oncologist before going onto single carbo.
Although it is a good chemo, my oncologist felt that it was a harsh one to the system and felt that others were just as good and not as harsh. I do believe that your hair falls out from it and that was one thing that I did not want again. For me Twice was enough.
As for radiation we discussed that option also but neither of us was really in favor of it. Even the doc I saw at Sloan Kettering said no to radiation for ovarian cancer. Who knows though..... some doctors say go for it.
I am sure that the two of you will make the right decisions.
Unread 06-26-2006, 03:38 PM
My sister's update and has anyone been on Topotecan?

Of course we understand....I hope you all get through this quickly.
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Unread 06-26-2006, 05:08 PM
My sister's update and has anyone been on Topotecan?

s Heni

I currently have a dear friend on topotecan and thalidimide.
The topotecan really knocks hard at her bone marrow. But otherwise she tolerates it well. Her hair is thinning and she is pretty tired all during week of treatment.

There are two schedule ways to receive topo.
1. Five days in a row, Monday thru Friday.
Followed by two weeks off.
This dosing method has more side effects.
2. There is currently a trial with topo dosing.
Once a week dosing only.
The side effects are less and the trial is hoping to find this dosing
method to be as effective.

My friend is on the first method. If your sister has difficulty, you could always suggest the second method. That trial is ongoing at Fox Chase Cancer Center in Phila.
I am glad they are still treating with aggressive chemo.
As for radiation....
It was done more in the late 90s along with chemo and was called WAR or whole abdominal radiation. Some ladies on the acor list had WAR and are still here to tell about it. So that must be a good sign. Or.. does your sister have a smaller area they are targeting?

Thankfully your niece is okay!!!!

Give your sister my regards.
I sure would love to meet you at the OCNA conference. Any chance?

oxoxo karenann
Unread 06-26-2006, 05:37 PM
My sister's update and has anyone been on Topotecan?

s Heni

I'm sorry to hear of the troubles you have went thru. Your sister has been thru so much, and then to have her daughter face such a major surgery. Yikes!

I'm keeping all of you in my thoughts and that this will be the chemo that finds your sister in a very long and healthy remission.

and to all
Unread 06-26-2006, 05:49 PM
My sister's update and has anyone been on Topotecan?

I am glad your neice is doing well.
I also hope the Topo gives your sister a good response. My onc suggested Topo to me if I had another reaction to Carbo. But I have tolerated the Carbo so far.

Hang in there. And please try to come to the ONCA convention.

Unread 06-26-2006, 07:03 PM
My sister's update and has anyone been on Topotecan?

Hi Heni, just wanted to send my thoughts and prayers out to you and your family.
Unread 06-26-2006, 08:07 PM
My sister's update and has anyone been on Topotecan?

Thanks to all for your replies~

I just learned that my sister will be given the topo alone as follows:
Once a week for 3 weeks
One week off
For anywhere from 4.5 - 6 months, followed by the radiation.
They will just be targeting a small area where the last recurrence was.

I was just faxed a copy of the Drug Resistance Assay...very interesting.
If my sister had listened to her onc in AZ, it most likely would have meant trouble. She recommended no surgery and placing her on Gemzar, which on this report shows she is resistant to. I have never liked this woman as I have always gotten the sense that she has already written my sister off...GRR!
Once again, I thank God for Dr B., as you well know already.

When is the OCNA conference...I have already forgotten like most things in my life at the moment? Didn't you say it was in DC this year?
Hopefully it will not conflict with our moving into our new house which has had delay after delay.
I would love to attend and see all of my sisters in the real world!
Unread 06-26-2006, 08:15 PM
My sister's update and has anyone been on Topotecan?

s Heni,

things have been crazy for your family. Hope they settle down soon and all is well. I dont ' have any advice about the Topetecan, but I hope your sister tolerates it well and that it chases away any cancer cells that DARE to remain.

Unread 06-27-2006, 07:54 AM
My sister's update and has anyone been on Topotecan?

Hi Heni, You certainly have has a hectic time and I am glad to learn your neice is doing well and that the doctors seem to have a solid treatment plan for your sister.
I will be keeping your sister in prayer. Pls try take care of yourself as best possible; you are such a wonderful help and advocate for your sister.

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