Hi everyone,
It's amazing - when my mom was first diagnosed with stage IIIc, it felt like everything was coming to an end. But everything you all told me in the beginning was right. We've actually continued to enjoy life in spite of cancer. It's a different kind of life and we are sad occasionally but we still have really good times. I am so proud of my mom - this is her 5th cycle and she has been so strong throughout this.
I can't believe we're almost done with the primary IP treatment.
Kathy6, you gave me wonderful advice when you told me to stay one step ahead. It has definitely helped in this process. We anticipated side effects, researched things every step of the way. It's made us feel much more in control of things.
So now, in the interest of staying one step ahead, we are trying to figure out where to go from here.
My mom does not want to just finish at this point. She says she would like to be proactive in minimizing chances of a recurrence. It's hard because there is no guarantee.
Assuming my mom still feels good after the 6th cycle, we are considering a few options. I think we are going to take a short break regardless - my mom wants to go on a family cruise and recover from all this therapy :)
1) The xyotax vs taxol vs placebo trial. I know there have been other discussion threads on this. If anyone has had any significant experiences please share.
2) Vaccine therapy - I know the mimosa trial is closed but the results are supposed to come out next year, and there may be other trials as well (there was a phase 1 trial that was posted on this site a couple days ago that looked really promising). I wonder if that might be a better option than maintenance.
We will of course discuss this with her doctor and we plan to go for a second opinion to either MD Anderson or Memorial Sloan. But if anyone has feedback, especially about the trials - please let me know.
Many, many, many thanks. You have all been a life--saver through this process. It's strange how close I feel to people I've never met :)
Anne
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Almost done with IP!!! - now xyotax? vaccine?
14 replies
- Oldest first
- Newest first
- By Jennali
- Posted June 2, 2009 at 9:04 pm
- Report post
My doctor was hoping I would either do a trial or go on consolidation chemo. I opted for neither. He stressed that some trials have time limits...for instance, can only be so many weeks past last chemo. So that is something to look closely at. (terrible grammar...sorry!)
Her doc could also suggest consolidation chemo. I felt that my body needed time to rebound from my first line chemo; I did not want to go another year without hair, and I truly thought that I would not have a recurrrence. Well, I was wrong, and was only in remission for a matter of months.
The thing is, and my doctor agreed, is that there is nothing proven to prevent a recurrence. Doing consolidation does seem to lengthen the time before one has a recurrence. There are absolutely no statistical benefits in terms of overall survival.
Considering all that, I chose to wait and see. I am not sure now if I shouldn't have participated in a trial, but there is no point in second guessing myself at this point.
I wish you and your mother all the best as you navigate this next leg of your journey. The cruise sounds lovely.
- By xwordlady
- Posted June 2, 2009 at 9:56 pm
- Report post
A friend is finishing mid July. 6 cycles 1/v and i/p taxol and cisplatin. responding very well. so she is facing same questions with no clear strategY; options range from taxol i/p every 21 days as maintenance.. ( with hair loss the for a year which doesnt really appeal); trials - still to be discussed; nothing till ca125 numbers show concern movement... what else is there? and she is thinking second opinion too MSC or Hopkins or MDAnderson or Cedars Sinai- experiences would be welcome- oh she was IIIB- optimal debulking
post menoause. thanks ladies i know this will help as she navigates this and her options
- By agg22
- Posted June 2, 2009 at 10:16 pm
- Report post
Thanks Jennali - you're right there are no correct answers and there is absolutely no point in second-guessing ourselves. It's difficult when we are facing things that are completely unknown. My mom's doctor said that he would do an additional 3 cycles of IV taxol/carbo after the 6 cycles of IP, but he said it's completely without evidence of benefit. He doesn't believe in any longer maintenance therapy apart from a trial.
I want to do as much research as possible on options and then we'll just cross our fingers and hope for the best.
- By Patricia123
- Posted June 3, 2009 at 6:05 am
- Report post
I finished the iv/ip carbo taxol treatment, stage 3c, optimal debulking, ned on scans and Ca 125 of 18. Now six weeks post chemo.
The onco recommended 24 IV Taxols,lower dose, I think 75 mgs, at weekly intervals.
He said it was to lengthen time to recurrence but said he thinks, there is no evidence as the trial for this closed early, that it prolongs life. Weekly Taxol is very much easier to take with fewer sides.
He says his patients do well, work, feel good and keep hair,,mine is growing back so I want to keep it.
He doesn't do other protocols and Mimosa is closed. I wish I could get mimosa and maybe next year?
I am doing it mainly b/o the higher Ca 125. If it were below ten I might not but the 18 makes me nervous.
He said there is a 50 percent chance I will "live out my natural life" and die from other causes. I don't think this means a cure,,I think it means long term stable disease or long remission. I am 67 soo maybe he thinks I won't live long anyway.
It is all so nebulous,,I hate that.
- By Patricia123
- Posted June 3, 2009 at 6:07 am
- Report post
PS,,no stats to say consolidation prolongs life doesn't mean they have tried to find them and cannot.
It means there is no trial that has shown that in double blind placebo controlled studies. They closed the monthly taxol trial early before they could get evidence,,I don't know why.
There is a five arm trial ongoing of maintenance which hasn't finsihed yet. So maybe the"proof" is in the future. A gamble isn't it?
- By hinsopa
- Posted June 3, 2009 at 9:14 am
- Report post
I had decided to do the vaccine trial at Roswell park with Dr. Udosi. It has just opened up for new enrollees. Unfortunately, my 2.5 years of remission stopped this month with a recurrence. They will be doing one in the future for women that have had recurrences.
- By BarbP
- Posted June 3, 2009 at 11:00 pm
- Report post
I was diagnosed in March'06...after surgery, I had IP carbo and IV taxol one week and 8 days later, I had IP taxol. I had 6 complete treatments of this routine. I was 3C. Then, I had a year of IV xyotax...one treatment every month for 12 months in the trial. Another chemo friend, had close to the same initial treatment as I did and was chosen, as I was, for the xyotax arm of the study. She has just reoccurred. So far, I have not and my CA125 has stayed around 6 or 7.
Symptoms were very minimal....tired easily, but carried on my life everyday. I did not lose my hair with the xyotax, nor did my friend. On my last treatment, I had a reaction to the chemo, but they were able to finish the chemo more slowly. Oh, they did have to reduce the dosage for both of us after a couple of treatments because our neuropathy got worse. I think they were allowed to reduce it three times and we only needed it reduced twice.
Let us know what you all decide...
- By agg22
- Posted June 3, 2009 at 11:42 pm
- Report post
Thank you everyone for your replies. I wish there were firm protocols to follow for this. Hopefully there will be in the future!
I admire all of your strength and your willingness to share your experiences. We'll talk to some more doctors and let you know what we decide.
Anne
- By Patricia123
- Posted June 4, 2009 at 9:22 am
- Report post
I read the question and wondered if my daughter posted it!!
I am in the exact position, 3 c, just f inished carbo/taxol IV/IP and it was easier than I thought and I feel wonderful,,luck and anticipating helped.
I am now on Weekly Taxol, lower dose for 25 treatments and had the first yesterday and it was a piece of cake. No nausea, no pain, the only thing I didn't like was the Benadry, came home and slept all afternoon. But it took one hour and was just easy.
But if I could have gotten in mimosa I would have. And maybe taken Avastin with Taxol. I hope I gt a chance to get Mimosa later.
So I know your issues and wish you luck. Weekly Taxol is much easier than monthly so ask about that. Maurie Markham seems to like it.
A different life? Yes. But a nice life, for me.
- By katie52
- Posted June 4, 2009 at 4:48 pm
- Report post
Hi,
From my experience it is critical that you make a decision about the next step before you make vacation plans. I am in the mimosa trial and have been since 1/07. I had to enter the trial within 60 days of completing my chemo and I just made it by one week because I had made plans to visit my daughter in South Africa. I also work at a cancer research center so I know that participating in clinical trials can be really great and important.
Regards,
Katie
- By agg22
- Posted June 5, 2009 at 12:23 pm
- Report post
Thanks Katie. We haven't made our vacation plans yet. First step is to get our second opinions about treatment. The xyotax trial needs to be started within 12 weeks of the last chemo. If we go away it will be just for 1 week so depending on how my mom is feeling we may even be able to go during a trial if the study schedule permits.
I think my mom just wants a break and change of scene - actually I think we all would benefit from that.
Thanks again,
Anne
- By agg22
- Posted June 9, 2009 at 1:46 pm
- Report post
Hi everyone,
We are planning to go to MD Anderson for a second opinion regarding where to go from here. They are reviewing our records right now and letting us know which doctor we will be seeing. This is the first time we are traveling for a second opinion, so if you have any tips about staying near MD Anderson or your experience there, please let me know. I'm a little nervous - I'm really hoping they will give us some valuable information as to where to go from here. It's pretty confusing right now.
Please share your experiences if you can.
Thanks!
Anne
- By Mimi2009
- Posted yesterday at 3:28 am
- Report post
Hello,
The trip you were planning sounds great!
Check out the study MoRab 003...Taxol (weekly) with placebo or Farlatuzumab. This is phase II of a promicing study and phase III is starting soon (adding carboplatinum to the mix).
I think enjoy the family time, much better for the soul!
- By RhodaLois
- Posted yesterday at 4:54 pm
- Report post
I was on a blind blind trial but got bumped off when the cat scan showed new recurrence after two months. That was one of the critera....can't have recurrence while on the trial.
Can someone explain what the Mimosa trial was/is?
I'm on Leukeran pills as a maintenance protocol, trying to keep t hings quiet in the peritoneum and then will have another CAT and see what's going on. The tumor I had grew after topotecan which I finished Oct. 15.
Add to the discussion