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2nd Attempt To Hopefully Get A Reply 2nd Attempt To Hopefully Get A Reply

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Unread 12-17-2003, 04:42 AM
2nd Attempt To Hopefully Get A Reply

I posted the following a week ago and was disappointed that I didn't get 1 reply...maybe it just got overlooked or perhaps there is no one who can help...so I'll try again:

Good Morning All~

Thanks to all who replied to my first post regarding lapses in time between chemo treatments.

I forgot to mention the following additional information:

My sister was staged with OC, StageII-C. She was staged this way becuase there was slight spreading to her peritoneal (sp) wash, no further spreading and lymph nodes were clear.

The recommended treatment was the usual, carboplatin/taxil for 6 treatments. However, the oncologist who my sister was referred to, participates in a clinical trial to study different chemo combinations to prevent reoccurrence. (SEE TRAIL SYNOPSIS BELOW) which means she will be on chemo for a year as opposed to 6 months. The meds used in this trial are extremely aggressive and potent, much like the carbo/taxil, only worse. She will be getting the carbo/taxil on the backside (final 6 months) of this trial. They had told her that the first two combinations would not even have her experiencing hair loss, however, she did after only her second treatment. Now there is the problem with her white blood counts dropping VERY low and if her prior complications were not enough (she required another surgery right after her TAH for a mass on her kidney that was on her original scan (PRIOR to her TAH) that 3 doctors missed when they were performing the TAH, (thank God it was benign) to now being sick with the flu, severe diarrhea, and strep throat. She has to keep going back and forth to the hospital to be hydrated as thet refuse to admit her in fear that her immune system is now so compromised she could pick up anything floating around in the hospital. Don't they have ISOLATION wards anymore)?
She has been told to basicaly be a prisoner in her own home, not to go out where there are people, i.e. the grocery store, the movies, malls, etc.

Finally, though I realize that you cannot and should not be judgmental of any person's decisions, unless you yourself, are walking in their shoes, I quietly thought to myself I didn't feel my sister should be participating in this trial.
My sister was given a 75% chance of total recovery, given she was staged relatively good, and certainly better than most, as it was caught as early as it was. In discussing her situation with my onc/gyn, he indicated that her chanes for survival were great and when it came her time to "go" she probably would not as a result of this cancer.

I apologize for how long and rambling this post is, however, I wanted to put out as much info as I could for any of you who may have thought/opinions.

The trial synopsis below is being performed by US Oncology:

Phase III Randomized Trial of Induction Chemotherapy with Gemcitabine and Carboplatin Followed by Paclitaxel Consolidation versus Paclitaxel and Carboplatin Followed by Paclitaxel Consolidation in Patients with Advanced Primary Epithelial Ovarian or Primary Peritoneal Cancer
Trial ID: 02044

This research study is open to subjects that have ovarian cancer or primary peritoneal cancer, which behaves like ovarian cancer. The purpose of this research study is to look at ways to improve the treatment of ovarian and ovarian-like cancers by comparing a standard combination of chemotherapy (paclitaxel plus carboplatin) with another combination of chemotherapy (gemcitabine plus paclitaxel) that has also shown activity in these types of cancer. In addition, studies have suggested that there might be a delay in the time it takes for the disease to return if patients receive monthly paclitaxel for 1 year after completing treatment with combination chemotherapy. Therefore, following combination chemotherapy, all patients will receive paclitaxel therapy for one year as long as it is tolerated. Research participants who are eligible to participate in this trial will be randomized (similar to flipping a coin) to receive one of two drug regimens (paclitaxel/carboplatin or gemcitabine/carboplatin). If the cancer should come back within 6 months after the end of chemotherapy or during chemotherapy, the cancer will be considered to be resistant to carboplatin. Research participants would then have the opportunity to switch to the other drug they have not received (gemcitabine or paclitaxel) without the carboplatin. The drugs, paclitaxel and carboplatin, are approved by the Food and Drug Administration (FDA) for the treatment of ovarian cancer. Gemcitabine is approved by the FDA for the treatment of cancer of the pancreas

Thanks again to anyone who can reply to this and I wish everyone fondest wishes to a happy and HEALTHIER holiday season!

:HUG:'s to all~.....why aren't my hugs showing up....LOL?
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Unread 12-17-2003, 05:19 AM
2nd Attempt To Hopefully Get A Reply

3 Sisters,

Obviously, you are worried about your sister participating in such a clinical trial. But, she and her oncologist (not a gyn/onc?) must have talked about it in detail. And, this clinical trial does consider various options re: chemo. i.e. If one is not on one combo, one is on the other, and carefully and thoroughly monitored. But, as you mentioned, it is randomized.

And, a number of us have had low WBC counts - but there are ways to get them back up - in my case, it was Neupogen (if my memory serves me well) injections that worked.

All the best to your sister.

Unread 12-17-2003, 05:42 AM
Thanks Rose....but....

Hi Rose~

Thanks for your reply.

My primary concern is that her oncology center/doctor is a participator in this trial and cannot help but wonder if there may be, perhaps, a conflict of interest. I have yet to find anyone who was not surprised (after reading the trial) that in her earlier stage, she would be accepted into such a trial.

Aside from her WB counts dropping pretty consistently, there appears to be other signs that she is not tolerating this well.
Have you, or do you know of anyone else who has had such a long lapse (it's now 4 weeks) in between chemo treatments?
That's my MAJOR concern...that maybe the cancer is having a "field day" now with no chemo being given for so long.

BIG :HUG: right back~.....why aren't my HUGS working....LOL????????????????????????????????????????
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Unread 12-17-2003, 06:58 AM
2nd Attempt To Hopefully Get A Reply

Perhaps if your sister continues to have reservations about the clinical trial (incl possible conflict of interest) and/or her post/op treatment in general, she can seek a second or even third opinion from one or two other gyn/oncs about the best course of treatment for her.
blessings, peggiesue
Unread 12-17-2003, 07:58 AM
2nd Attempt To Hopefully Get A Reply

Heni --

There is someone else on the boards here who is on long term chemo for ov ca. I will see if I can locate the post.

Every clinical trial has an independent data monitoring board to insure the safety of particiapants. Instructions for contacting that board should be in your sister's participation consent packet.

I also know that chemo is rough and many women who have successfully fought ovca have had problems with their chemo and overcome them.

It is just an awful disease

Unread 12-17-2003, 08:00 AM
2nd Attempt To Hopefully Get A Reply

Heni --

It is SirenSong who is on LT chemo. Her protocol seems similar, but not identical to your sister's

Here's the thread
Unread 12-17-2003, 12:17 PM
2nd Attempt To Hopefully Get A Reply

s Heni

You are a dear sister and your sister is fortunate to have you.
Clinical trials for ovarian cancer are far too underused.
So I applaud your sister for consenting to one even though she is stage IIc. That said, keep in mind, she is free to drop out of the trial whenever she wishes to opt for standard treatment only.
Delays between chemo treatments are common. Try not to worry too much about this.
I did not realize that taxol consolidation had come back as part of another trial. The consolidation trial itself closed early when it was showing signs of increased remission. However, it remains quite controversial. Some docs feel it may increase remission time but not overall survivor time. Hence they feel you are giving up good healthy time and taking a chance with further immunosuppression. WHo knows. There are no clear answers when it comes to treating ovarian cancer.
Best wishes to your sis. Tell her to stop by.

oxoxo karenann
Unread 12-17-2003, 01:58 PM
2nd Attempt To Hopefully Get A Reply

Dear 3 Sisters,

I, like a number of others on this board, have had delays between chemos. In my case, I have only managed to have 6 chemos between May 8, 2003 and today. (I had the 1st one the day of my op.). So, the original schedule of 6 chemos has now been increased to 9. And, again, in my case, and each case is individual, my CA 125 # has increased slightly from my low, this August, of 70, to - as revealed by a CA 125 test last week - 84. However, I only have been able to do 2 chemos since then. However, since it dropped from over 2000, I am not going to panic. I probably will be back on the chemo track next week.

Why I mention this is to somehow indicate that here is someone getting healed - me - who does not let delays 'throw' her. What the lapses did , in my case, was to tack on a few more chemos - at least, as far as I know now. But, each case is different.

However, to be fair, I, too, have a much loved sister, who worries about this 'all' above, much more than I do. Maybe this is what is happening with you and your sister. In my case, when my sister asked me to let her know all that was going on, I understood her need why, and so I have.

big P.S. Your hug will come up if you use lower case letters!
Unread 12-19-2003, 02:05 PM
2nd Attempt To Hopefully Get A Reply

Hi, Heni!

Sorry I didn't respond sooner. I'm on a dial-up, so I keep running into situations where I'm on the board and trying to answer questions, but then an incoming call will disrupt the connection and the site will stop working and I have to dial back in . . . which I don't always have time to do.

As Dorrie said (thanks, Dorrie!), I am currently doing weekly condoliation with Taxol. This is not part of a formal trial. Rather, it is something that my doctor wanted to do since the results of that discontinued trial seemed to indicate that there was some benefit to be derived from weekly chemo being given for up to one year. I do know that while my doctor thinks this treatment has promise, another notable gyn/onc team at another hospital here in LA does not believe it is worthwhile. When seeking opinions, I got one pro and one con. So . . . I went with what my heart told me.

I did hear something on the radio recently about the promise of Gemcitabine being used with Carboplatin. Would your sister have a choice of which arm she would be in? I suspect that either arm would give her some benefit, but as Karenann said, it is still chemo, and it is still toxic. I really don't know if I'm helping or harming. But with my cancer, it's more like a 75% recurrence rate. I want to be one of the 25% who don't recur! So I am doing everything I can to be in that group.

The choice whether to participate in a trial or not is a tricky one. I wouldn't worry about conflict of interest. The trial being suggested is a good one for your sister's cancer. If you feel it would be too toxic, then don't do it. If you feel it might provide benefit, then do it. There are many trials that deal with Stage 2 cancers.

Karenann has always said, "Make the decision that you will regret the least." I try to keep that notion close to my heart when making difficult decisions. And they are *always* difficult. If you talk to 10 doctors, you will get 8 different opinions. So you have to do your own research and decide what you can live with.

One of the things my doctor said was that if he did a second look surgery and found cancer, he would recommed chemo. If he did a second look surgery and found no cancer, he would still recommend more chemo. The end result? Why bother with another surgery . . . and in general, it appears that his recommendation for me was going to be more chemo no matter what.

I think I already posted that I had some lengthy delays in chemo due to WBC problems. I was hospitalized once for low counts, but most of the time, I did have to stay at home, stay away from crowds, no go anywhere, take Neupogen shots, etc. It was OK. I didn't mind.


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