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July 1997, I was diagnosed with stage IIIC. Had a long remission and then recurrence four years ago with huge metastatic ovarian tumor in my chest. Had surgery, no chemo and am still NED. Life is great! I am working hard at grassroot efforts to get increased funding for this disease and doing anything I can to raise awareness about this disease. Wishing you all sunshine and rainbows. Susan
Hope is what you need when dealing with this disease. It has kept me going for a lot longer than they predicted. They can keep their statistics, I plan to make it another 40 years. LilySue
Hi,
Just found this threat and gave me hope when I need it. Thanks ladies
GEPI
I have a good friend who has now been on Avastin/Gemzar since February 2008 (23 total doses) and it has held her disease stable. Hers is in a few lymph nodes. Hope it works for you. Susan
Hi Susan-I just started avastin to see if that will stabilize, and/or shrink the tumour. it is in my pelvis, the size of a plum, and i can feel it. I don't have the energy to do chemo, cuz when I did it before, I was completely wiped out for 5 months, had to live with my son, and he took care of me. He's not up to doing that again (I live alone). So the doctor said, if the avastin doesn't work on the tumour, they will zap it with a localized radiation, which won't damage other organs. The problem is that there are some small nodules in my lungs also, so i may have to do chemo again in the end....which means, I quit my job, go into assisted living, etc.....it's so complicated! Maybe the PARP pill will be out by then. Take care.
I started Avastin this week for the tumour they found in my pelvis (size of the plum). The doctor says I will stay on the drug for 2 months, and if the tumour doesn't shrink, they will target-radiate it out of me. That way it doesn't damage other organs, etc. I really am avoiding chemo this time, because it was so hard on my system, so I'm praying that the Avastin will at least shrink it
Blessings!
This is a link to platinum resistant studies:
http://clinicaltrials.gov/ct2/results?term=platinum+resistant&recr=&rslt=&t ype=Intr&cond=ovarian+cancer&intr=&outc=&lead=&spons=&id=&state1=&cntry1=&s tate2=&cntry2=&state3=&cntry3=&locn=&gndr=&rcv_s=&rcv_e=&lup_s=&lup_e=
HI LILYSUE,
I had a ct scan yesterday to see if there are any tumours in my lungs. The doctor said I could start Avastin, which is a drug that will cut off the blood supply to tumours, and if that doesn't get the CA 125 lower, then I will have to do taxol again, which I hate because of hair loss. My hair is finally growing back after 2 grueeling years (that photo of me is with me wearing a wig!). I'm just starting to date again after a 3 year break, and so I want hair!!!
take care.
It's really nice that you posted on here AFTER your remission to give hope to us that think we see that 'remission' light at the end of the tunnel!
Hi - I am platinum resistant- stage IIIC since 1998. It means that the tumors don't respond to any platinum chemo drugs. So I am now doing non-platinum. My Doctor did say that if this was not working, their is a trail for platinum resistant patients where you are given a pill at the time platinum chemo is given and this pill makes you non-resistant. Don't know more than that at this time.......
LilySue,
Thank you so much for your inspirational post. We here all need more of these. I finished chemo on June 15 and had a CT scan that came back with some area of suspicion and some acities. They were going to do a biopsy but decided to do a PET scan instead. That was on the 2nd of July. I still have not heard anything and have an appt. with my Dr. on the 24th of July so I am holding my breath. Thank you so much for your post.
Phyllis
I am so glad to read your story as I need to hear good news. It gives me hope and encouragement. I have been in remission for two years and I am taking it day by day, week by week, and month by month.
I'm not sure what it means to be platinum resistant. After a chemo sensitivity test I found out that carboplatin did not work for me. Does that mean I am platinum resistant? I was originally diagnosed ten years ago, had a recurrence four and a half years ago. Other than that, going strong. There are long term survivors. I only know of two other women with ovca - one is close to 15 years with no recurrences and the other closer to 20 years with one recurrence over 15 years ago. Blessings and grace to all - Patty
Pam,
My doctor is at University of Alabama at Birmingham (UAB). I am part of a support group called Lilies of the Valley in Huntsville. As far as the complementary and alternative medicines, I don't know much. We have had a few women use the complementary approach and they all got their physician's approval of what they were doing. As far as alternative, we have had only one woman choose that over chemo, and unfortunately she died of her stage IIIC disease within a year. Was it the alternative approach? No one knows for sure but I for one believe in western medicine and it has given me 12 years that I did not expect to have.
Susan
Hello all~
I was dx 10/07 IIIc, had surgery and chemo. I am deathly allergic to taxil, and ended up going to M.D. Anderson for their protocol to desensitize my body. I had 9 months NED. My recurrence appeared in the paraortic lymphnodes and the left pelvic (original tumor site). I just finished my 8th treatment on taxol/carbo and will have a ct scan the end of this month. I am in the K.C. MO. area and have not been able to find a support group.
I have a great support system, but it is so great to hear the survivor stories here!!
I too, live with the attitude that I am not your average statistic, and tell my DR. that continually.
I am curious from you long-term survivors, if there is any special diet you follow? body flushes, cleansers, etc. Does anyone see a Holistic or Naturalist Dr. My Dr. prefers I see his nutrionist at the Cancer Center.
I am also awaiting a phone call from a woman is a stage IV , 12 year survivor that refused chemo with her recurrence and took cesium along with body cleanses. Has anyone heard of cesium?
LilySue~ Where is your Dr. and support group?
Thanks ladies~
Pam
Bohan54, I hope someone who is a long term survivor and platinum resistant responds to your message. I am good friends with a woman in our support group who is also platinum resistant and is stage IV. She is now five years and going strong. Her initial remission was only 4 months. She has been on several chemo drugs over the years and most recently since February 2008 has been on Gemzar and Avastin and has "stable" disease. Her doctor tells her that until they find something that really works on platinum resistant, they need to treat hers like a chronic disease and keep it stable. Susan
THANK YOU....THANK YOU.... THANK YOU......
For your post. It is certainly uplifting and inspirational to hear of long term IIIc survivors. Looking at statistics is so depressing. A friend of mine who is an oncologist told me at the beginning of my journey with IIIc ovca.......DO NOT LOOK AT STATISTICS......Just Live Your Life. I have been in remission now 1 1/2 years. There is a song that Rihanna sings the chorus to that I have on my cell phone "Just Live Your Life". It is my own personal message. It has been out for some time now....it is still my favorite for obvious reasons.
God Bless to all on this site -
Mary Ann
Just curious to see if there are any long term survivors who are platinum resistant and did not get a long term remission after initial treatment.
Happy for you LilySue.
Thanks to everyone. Carmen, my situation is so different than yours. When I had my recurrence and the CA125 started rising, they could not find any evidence of disease and I felt so good. At that point we just took a wait and see approach. It took five years before a tumor showed up in my chest and I had surgery. By then my CA125 was 950. My disease seems to occur as single solid tumors. Sounds like your doctor wants to put you back on chemo to try to stay ahead of the cancer. Not sure what I would do if I were in your shoes but I think I would really consider the chemo again.
The OCNA conference is held each year in July in Washington DC. Just keep an eye on their website or put your name on their email list. It was so informative and inspiring. Nice to know we are not alone in this. Susan
Ditto what everyone else said-thank you all for sharing!
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