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I am 46 (for two more days) and I was diagnosed November 2006. In the past 2 and a half years I have spent all but 10 months on some sort of chemo. 4 recurrences. I've never met anyone in my situation. Is there anybody out there?
Cancer Taxol Surgery Avastin Diabetes Ovarian cancer Chemotherapy Hernia
I am sorry you are going through this. And have seen many posts from people who have been through lines and lines of chemo regimins. Some have never been in remission and just truck on and on enjoying life.
You will find them here,,keep rolling along and my best to you!
lissa-G, I know this must be wearing on you and discouraging. Have you looked into the immunological trials where they create a vaccine from your own tumor tissue? There appears to have been some success with this in keeping women in remission for longer periods. I believe there are two that I know of ...U of Penn and one in New York at a clinic. I think you can find them on the National Cancer Institute website. They do couple the vaccine with chemo I believe. I feel sure there are some other women on the site who have been in your shoes and will post soon. I will keep you in prayer that they can find something that will give you a longer remission. Hang in there. Cindy
I think the other site with the clinical trial is Roswell Park Cancer Clinic.
we are the majority, so feel in good company. i was diagnosed july 2006, treated iv and ip until november 2006. remission until may 2007, and in treatment since, carbo gemzar, topetekan, navebine, taxol weekly, and now carbo once every 3 weeks, which has been changed to every 4 or 5 weeks. i lost a friend i met in this walk, diagnosed november 2006, 38, passed away may 19 2008, stage 111c. keep your chin up, be happy for each and every day, believe GOD will give you long lifeas he promises. it is very important. see an alternate doc if you can. i started seeing one feb of 2008, after the fluid, which is the only reason i am on chemo, started to accumulate. i am on whole food supplements, and they do make a difference. my doctor is tracking what i take, and he tells me now to not change a thing, when i mentioned seeing an alternate doc last year, he said why, you take good care of yourself. i have been drained over 25 times. but this last one was only 1.4 liters, and it has been 5 weeks, so this treatment has put me back to stable, words which are better than remission. if we are fighting this disease, and we are stable, we have it under control. if we are in remission, or they think we are in remission, and it has time without treatment to whack us, it can be worse. you hang in there. look at th glass half full, not half empty, but know GOD is with you...sherry
I'm sorry that you are going through this. I have been doing chemo for 18 years. (you would think that in 18 years they would have found a cure don't you?). I am still alive and kicking. Keep your chin up!
Wow! Thank you! Thank you! Thank you! Sometimes I feel very alone and it is easy to get depressed about the situation. Especially when all the good intentioned people out there keep asking me "how are you doing". I have gotten so I lie to most of them and only tell the whole truth to my closest friends. I'm so glad I found this website! I did participate in a clinical trial at Sloan for a vaccine, but it was only for people who were in their first remission. I was kicked out when I had my first recurrance. I still see the doctor (Paul Sabbatini) whenever I feel like I need a 2nd opinion. I guess my biggest fear right now is that I am on Avastin and after my first two treatments my CA125 went up from 187 to 212. My doctor says not to worry, it's too early. That's hard to do. I am going to look into the other clinical trial in NY (I live about 75 miles north of the city) and I really appreiciate the good karma I have gotton from all your responses. "May the force be with you"!
xo lissa
Hi, Lissa. If you are interested in either the trial (with the vaccination) in U of PA, or the one at Roswell, let me know. I have spoken with both of the lead drs there and have their personal emails and I'd be happy to help you out there. My Mom went to MSK as well, after she had her first recurrence we went for an opinion and decided to keep her local (she lives in NJ). There are so many things available especially where we live. Shoot me an email if you are interested in any help- I have a lot of contacts that are always more than willing to help out!
kmackrell@comcast.net
Hugs,
Kathy
Lissa,
I'm so glad you found this site! It has been a life saver for me in getting support and for not feeling like I am in this journey alone. I was diagnosed in 4/04 with IIIC and have been on multiple chemos ever since with just little breaks here and there, and never in remission. Quality of life has been pretty good with some worse times but overall I am so glad to be here over 5 years later! There have been 5 major surgeries and I am facing a 6th when a new internal hernia decides to strangulate. Right now I am in the hospital with an obstruction related to the internal hernia, but started liquids and hope to go home again in a day or two. But in the meantime, until the hernia causes big problems, I am going to live a fully as possible and plan for options should I have to race back to my doc. By the way I am currently doing avastin/taxotere.
I wish you the best Lissa. come here for support. Walk through the tough times and enjoy any good times!
Mary
I was diagnosed the end of November 2006 also with stage IIIC OVC. Started Chemo in January thru April of 2007 then stated again in August of 2008. Should of started sooner but I had shoulder surgery and they would not let me do chemo till I was done with theraphy. I am presently still doing chemo, and my CA125 is slowly rising. So it does not look like I will be off any time soon. I am so thankful I am able to do chemo. And I just take it moment by moment, knowing the Lord will carry me thru. (My husband also has cancer , stage IV) So I understand how difficult the journey can be. (HHUGS)) and God Bless
Dear lissa-G,
I, also have found over the many years that lying to people is just easier all the way around.
I usually say 'I'm still alive and kicking' or 'I can't complain, wouldn't do me any good anyway'. If people REALLY want to know they will prod you a bit more but I've found most people are just making small talk instead of REALLY wanting to know.
I have one Auntie who says 'I know your lying to me!'.
I've also found that people say the most HORRIBLE things trying to 'relate' is all I can figure. I guess if you are having a conversation about flowers it's OK to say your neighbor lost all her flowers when a goat ate them.. BUT.. when talking with people about cancer they tend to tell you horror stories about their neighbors-wifes-aunt who had ______ cancer how it was horrible and they suffered for so long before finally passing away!
WHAT? WHY ARE YOU TELLING ME THIS?
Oh.. you know what? That reminds me of something I saw on Craigslist. Let me find it and post it here.
Be right Back...
It's the greatest thing to find all you couragous ladies. I posted the initial message when I was feeling really sorry for myself..I guess we all go through that every now and then. Right now I'm in my-Okay, I can deal with this frame of mind.
People do say the dumbest things every now and again. I had a women tell me all about an aquaintace who had ovarian cancer and was about to die...her version of the story was much more detailed. My sister was with me at the time and was appalled. I told her that it happens all the time. I guess people think you'll feel better if you know there is someone out there worse off than you are.
18 years is a long time to be on chemo, but it is far better than the alternative. I wish you the best and hope you continue to feel good and fight the fight! Is anyone out there going to the national conference in DC? My husband and I are going. It will be our first and I'm nervous and excited at the same time.
Love to everyone out there!
Lissa
Had OC in 2004 with recurrence in 2006. More surgeries and all the chemo available to use up to this time. I have come to the place where I am told there is nothing left to do. Not stressing because I'm at peace in my heart with it. My concern is wondering how fast this cancer will continue to spread and what damages will happen before it finally wins the battle. Surgery is no longer an option either. Have had several doctors opinions. All agree. BTW, the spread have been to the abdomen and liver.
A friend passed this link on to me. Might be of interest to some of you.
http://www.curemanual.com/index.php
Dear Survivors,
I do not have ovarian cancer but my mother did. When I read your stories, it seems I am reading hers. She was diagnosed at age 73 with IIIB and fought like crazy for 5 years through several courses of chemotherapy, with her first remission lasting 11 months, though the rest were shorter. She said it was worth it to her to have the extra time.
In the end, the cancer did not take her, not directly. She was in the process of a harsher treatment regimen and the cancer was at bay, but she became neutropenic and died of an infection.
I believe she would still say it was worth the fight. I know this is easy for me to say because I am not experiencing what you brave women are going through, but I do hope you keep up the fight to beat this hideous disease.
God bless, Barb
Quite frankly, that link, imho, is a crock. It reminds me of a book my husband bought years ago called The Cure for All Diseases. The author states that ALL diseases from cancer to diabetes are caused by parasites and all you need to do is build some kind of electrical machine and shock yourself for a few minutes several times a day to kill the parasites. That is crap, quite frankly, in my opinion.
BTW, it never helped my husband, he died from diabetic complications after heart surgery three years ago.
Some people may want to believe it, really I wish it was that simple to get rid of this cancer, but it isn't.
Sorry I didn't reply sooner to your post, I just saw it today.
I'm just like you. Stage iv, diagnosed Aug. '06. When I stop treatment my CA 125 raises, when it hits 100 my ct scan is no longer clean. I've been on it all, one drug stops working so I go on another. Last week started Taxol again for the first time since 12/06.
I'm seeing Dr. Sabbitini next week to pick his brain.
This disease sure gives us a lot of things to overcome !! I too know of many women who have been on chemo for years and years.
Since Jan 2004, I have been on chemo all but 6 months. The Great new is that for 4yrs I was on avastin and lived a very healthy busy life. It was
a miracle drug for me. Just recently I have not responded to it so I will be placed back on one of the "other " non targeted chemos. I am not looking forward to this, but if it keeps me going I will do it.
I hope the avastin works for you. Let me know and best wishes to you.
Hi,
This isnt about OvCa but I have a childhood friend who recently celebrated 14 yrs with Renal Cell Carcinoma--she has spent over 12.5 yrs on active chemo. Her story is both inspirational and she offers a lot of useful information. If you go to Youtube and search for Katherine Phillion she has a video done last fall before a conference.
Since I had disease progression on first line chemo and have liver mets that just doubled, I expect to never achieve a meaningful remission. I just started a phase 1 trial with Doxil, Avastin & Torisel that I am hopeful about. I just tell people that Chemo is my new hobby. I look at chemo as my friend and a sign of hope...I am worried about when there is no more chemo to offer me.
Hang in there--we can all do this!!
Teri
Wow! You guys are amazing! I just came back from DC where my husband and I attended the NOCA conference. I learned so much and met so many people who are in the same boat as all of us. It helps so much to hear that other people are out there. It makes me not feel so alone. I have a PET scan next week (if insurance ok's it) and I'll find out how the Avastin is working. Meanwhile I spoke with a doctor at the conference who explained to me how CA125 numbers can often get messed up when the patient is on Avastin. My CA125 is slowly going up...last time it was 232...she said get a scan, but don't worry too much about that number, it doesn't mean the Avastin isn't working.
Good luck and good karma to all!
Lissa
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