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I found you!!!

myfmlyrox's picture
myfmlyrox
Posts: 7
Joined: Jun 2012

Hello new found friends! Oh my goodness- I can't believe that I have been going through this journey for the past 2 years; looking for other survivors, and just found this CSN TODAY. I was diagnosed with OV in March of 2010- had surgery, peritoneal chemo for 4 months, and have been on maintenance chemo since May 2011. The ups and downs of this battle are so frustrating! Not knowing if every CA125 rise/fall is the beginning of the end. But reading some of the posts today, I have a new lease on life! I have only recently been experiencing any real abdominal pain to speak about, but not knowing if it was the beginning of the bowel obstruction that I have been anticipating would end my life, was worse mentally than any of the pain or side effects that go along with this disease. Seeing so many of us out there, on this site, still fighting the big fight, with tenacity and courage, I am rejuvinated more than I can express! Constipation/diarhea, hernias! I refer to my largest one (I have 2) as 'the alien'. He stays protruded all of the time, but really pops out after I eat. I have been taking 2 stool softeners and 2 laxatives daily for months, just to keep him in check. I am currently on taxol and avastin- 3 weeks on 1 week off, avastin on days 1 and 15. I have only had one infusion of the taxol/avastin so far. CA 125 went from 120-240-360-540 after Gemzar, so changed to Taxol. Taxol brought it down after the first cycle to 200 - 125-95-72. Then it jumped up a month or so ago to 130 then 360. Dr added avastin, we won't know how it is working until the end of the month. But every time that CA125 goes up, I review my life and my Living Will, and prepare for the worst. Thank you all for being here- I now know that I am not alone, and that a little blip in the CA125 isn't the death sentence yet. I was hoping to make it to Christmas- now I have no doubt that I will- maybe I should be praying to make it to Christmas 2015! Oh- my name is Patti

kikz's picture
kikz
Posts: 1248
Joined: Jun 2010

I felt just like you when I found this board. I was sobbing as I typed because I was going through a difficult time in my treatment. It sounds like we were diagnosed at the same time; March of 2010. I had chemo to reduce the tumors, surgery then more chemo. I finished treatment in November of 2010 and have been in remission since.

You will get support here as well as information from the wonderful women on this board. It is sad that we had to meet this way but this board has proven invaluable to me. I ocme here when I have good news, bad news, to vent or just check in to see how everyone else is doing.

I wish you the best on your journey. Yes there is always hope. We have to fight for it.

Karen

poopergirl14052's picture
poopergirl14052
Posts: 1101
Joined: Nov 2010

No one should go through this alone. There is always good advice and knowledge to be learned..val

Susan53's picture
Susan53
Posts: 175
Joined: Jun 2011

So glad that you found this sight, you will find a lot of support from all your teal sisters. I was diagnosed 8-9-10 with Ovarian and Uterine cancer. I had the MOAS on Sept. 8th and it was discovered that I also had Appendix cancer. All 3 of the cancers were independent from one another. I was very fortunate that it was found early stages with different grades. I was treated with chemo for the ovarian and radiation for the uterine. The appendix is a watch and see treatment. I have been in remission for 1 year and 8 months.
Karen was right we come here to tell good news, bad news , vent or just check on our teal sisters. Wishing you the best on your journey and please don't stay away. The people here have lots of information and friendships and are wonderful support. Sharon

lovesanimals's picture
lovesanimals
Posts: 1150
Joined: Sep 2011

As you discovered, you came to the right place for support, information and encouragement! We're so glad you found this board. Please feel free to come here anytime and keep us posted on your treatment, when you can.

Take care,
Kelly

Mwee's picture
Mwee
Posts: 1309
Joined: Nov 2009

I, also didn't find this board till I had my recurrance and ever since I've felt like I was not doing this alone. It is so wonderful to feel understood.
so glad you joined us ((((HUGS))) Maria

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I too was diagnosed PPC stage 3c in Aug. of 2010. I had chemo and surgery and more chemo. Took part in a vaccine trial during remission that only lasted 9 months and now I am on monthly Doxil which seems to be working. Ca125 is good and I will probably get a scan in the next couple months.
This is a great place to find someone who understands and has had the same experiences so they can give you tips. I also enjoy reading the survivor stories on Inspire.com and I have found several long time survivors at my local support group.
I am a nurse from years gone by and I remember too much from back then. It is just lately that I have been able to wrap my head around that I am going to just live with it and enjoy my life as much as possible. My fears do slip in quite often but I am trying to get away from letting it rule my life.
Do let us know how things are going. I am wishing you good luck with the avastin!

Linda

mopar
Posts: 1937
Joined: May 2003

How wonderful to have another teal warrior to share with! So sorry though, that this is what brings you to the best support group ever.

I was dx with OVCA Stage 1C in 2000. Had a recurrance in 2006, but so far, NED! I still continue to be inspired by many here, but also hope that I still have some 'usefullness' to offer hugs, prayers and support to anyone in need. Even though I am NED, I don't forget how I was comforted here, and the many new friends that I found.

Keep up that good spirit, Patti. I'll keep you in my prayers. And sending lots of (((HUGS))) your way!

Monika

kimberly sue 63's picture
kimberly sue 63
Posts: 327
Joined: Apr 2012

Im glad you found this site. Your not alone. Keep fighting, you never know what is around the corner. It could be remission, it could be a clinical trial just right for you. Hang in there. Kim

garden gal
Posts: 212
Joined: Nov 2010

I don't know what I would of done without this site. It is truly my life line. Prays for you. Kathy

kayandok
Posts: 1223
Joined: Jun 2008

Patti! So glad you found us, but sorry you had to come here. I remember too, the elation at finding such a great group of teal warriors.
Come back any time.
Hugs,
Kathleen

Pattyn
Posts: 45
Joined: Feb 2012

I found this site as I was recovering from my second surgery. It has been a God send. The women on here are true warriors and have been a real inspiration to me and many other teal sisters. Stay strong....you have found the right place to get support.

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