10 months of survival....1st day here.

• By jeaniet
• Posted September 24, 2009 at 8:30 pm
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Whoever comes up with the answer to your recurrence question will be a millionaire.
Of course at 3C your odds of recurrence are high, but there are quite a few women on the site who have been in remission for years. I personally think it is just the luck of the draw, but of course there are many women who attribute remission to diet, etc. Again, personally, I think that if diet is the answer, we would all remain cancer free, which is not the case.
So, for me, living a great life, fulfilling dreams, and enjoying every moment of being in remission is the plan.
By the way......I am Stage 4, and had an unfortunately short 9 month remission. I had a second surgery in July and just started chemo yesterday. So I have already faced the beast of recurrence, and nothing can prepare you for it. But I just put my feet down one in front of the other, every day, and will get through it to another remission, hopefully longer than the first!
By the way......I think every woman who does IP Cisplatin is a freaking SUPERWOMAN. I wasn't optimally debulked so I didn't get that tx, but you women can get through anything if you got through that!
hang in there.......learn to live with some fear, and I bet the fear will lessen as time goes by.
Jeanie

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• By abbaschild
• Posted September 24, 2009 at 9:00 pm
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Well, what can I say? I'm just 6 months ahead of you in our diagnosis. I finished my chemo just as you were diagnosed. So, I'm learning just as you are.

We all have to make our own decisions as to what we think we should do. Me? I am one of the ones who has changed alot of what I eat, what I put in and on my body. It's my way of doing something, you know?

I'm trying to fight this thing any way I can. I lean on the Lord alot and get my strength from Him. Sometimes I feel like the devil is fighting me all the way cause he doesn't want me to live. BUT I AM going to live. I'm going to live my life determined to be the kind of woman that when my feet hit the floor each morning that the devil says "Oh, Crap! She's up!!"

We're gonna make it, right? I know I am!

Blessings and hugs!!!

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• By AlyssasMom
• Posted September 24, 2009 at 11:16 pm
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Hi! I know why you are here. You're here for support. You're here to help make the scary thoughts and fears, a little less scary and frightful. You're here for hope, for without hope there is nothing. You are here to share. You are here to grow. You are here to learn. Just as we all are. To answer your question, since we don't know exactly what the cure is, we need to do all we can to enhance our chances of long term remission, if not permanent remission. That includes low fat diet, low sugar, cut down on meat, butter, prepared foods, etc. It includes eating more veggies, fruit, fish, olive oil, wheat instead of white bread, etc. It includes taking vitamins and supplements. It includes drinking quality water, and lots of it every day. It includes relaxation techniques or yoga or jogging or walking or any exercise you can stick with and do at least three times a week for an hour. It includes a healthy mental state. Don't hold things in, don't bottle things up! Let your feelings known. Don't hold grudges. Don't seek revenge. Live and let live. Don't take politics too seriously. Cling closely to those that truly enhance your life. Eliminate (YES, ELIMINATE!) those who cause you grief, are not in your corner, and cause you stress. You don't need them. Look for supportive, beautiful souls with positive outlooks. Get religion! ...and get it religiously! Read the Bible, Koran, Torah, etc. regularly and strive to be a good person. A helpful person. Get out of the house. Travel. Take day trips. Go to a museum. Volunteer your time to help others in need. You will be amazed at how it helps YOU. BREATHE deeply! Cancer hates oxygen. Laugh, explore, love, sing, dance, cry. The idea is to really feel it. Listen to people like you've never listened before. Learn to be patient. Appreciate the little things. Surround yourself with beauty. Do things that you've been putting off. Don't be lazy. When you start a project, finish it. Don't let junk mail pile up. Handle it. Clean out the garage. Be productive. Take up a new hobby. ...and most of all... thank God every day for another beautiful day. Thank God every day for your perfect healing. If you believe it, then it is so. Good luck to you! Hugs, Darthi

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• By bevl
• Posted September 25, 2009 at 12:36 pm
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tj...

Of course you're going to worry! How can we have this disease and not worry?

I'm about 5 months behind you. Surgery for stage 4 Dec 1 2008. Finished chemo April 22 2009. Dancing with NED. Questioning every little ache and pain in my body. But I believe it's a crap shoot as to who gets a recurrence. if my life is going to be shortened by cancer, I'm not going to worry about what I eat, I'm going to go for all the pleasure I can get! Try to find or create joy for myself every day so that if & when the cancer recurs I'll have a life I feel like fighting for! Go for it!

Bev

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• By Amy2012
• Posted September 25, 2009 at 1:35 pm
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Darthi,

I am facing my first round of chemo in 2 weeks, and your response made me well up with love, tears, and a profound sense of strength. You are so right, OXYGEN hates cancer! You have given to me an inspired outlook, and I will keep this message you have written, near to me on my first day. Thank you and namaste my friend!

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• By momanderson920
• Posted September 25, 2009 at 1:46 pm
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I don't know that there is any right way to prevent recurrence. Stage 3 and 4 have a very different longterm prognosis than Stage 1 and 2. But even that has exceptions which no one knows exactly why. I have met women who did all the right things with diet and supplements and still recurred and some who did not watch their diet who did not. I still prefer to follow the guideline of eating low sugar, nonprocessed, and 5 fresh green or fruit servings a day since that is the healthy diet recommendation for healthy people by the ADA. I asked my oncologist who has a PhD in dietetics as well and she said on the alkaline diet that the body regulates acid/alkaline in the blood regardless of what you eat since there is a narrow range of normal and body always seeks out homeostasis. She said breathing in oxygen and expelling carbon dioxide affects the alkaline/acid levels in the blood and the body will self regulate by increasing or decreasing your breathing if your blood gets out of the normal range of acid/alkaline. Still I figure it can't hurt to try and eat more alkaline foods. My philosophy on certain herbal remedies is to try them...what can it hurt, as long as they are safe and I can afford them. I do think there probably are bad things in milk and meats depending on what the cows, animals are fed or injected with. I prefer to buy non fat organic when I can and I don't eat alot of meat. The low meat diet is recommended by the ADA I believe as being the healthiest and I have a high regard for the ADA...my daughter has a BS in dietitics and is doing her internship in dietitics presently and she has a high regard for the ADA. As for how you live, we do know stress affects our bodies so trying to lower stress I think is definitely something to aim for. I like the idea of eliminating the toxic people in your life if you can. Sometimes we can't but if you can minimize exposure, that may help. I do believe in God and that He is a healer, whether it is through healing our body or spirit. And I believe that trying to keep as many things that give you happiness in life are good for our body. For me, my blessings are in my family and they have brought me much happiness while dealing with this disease. On the supplements, I have read about Maitake Mushroom Extract D and essiac tea as being helpful for some. And there are others. I do take an oral probiotic, lacto bacillus, when I remember to and I started drinking Kefir which is full of probiotics. Both are good for the immune system. And I am with JeanieT...any woman who lives through IP Cisplatin deserves a medal. I have heard that is pretty rough stuff. I've also read that it has a good outcome for prolonging remissions.

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• By tjenterprize
• Posted September 25, 2009 at 4:20 pm
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Wow! Thank you ladies! Your reponses are so needed. Thank you alyssasmom.....I can really relate to ALL the things you said. This is a horrible disease and though I would not wish it on my worst enemy it sort of has a "comfort" to know that I am not alone. I find myself cheering for each of you when I read of your stories. I continue to scour the internet for anything I can compare" my situation to. There are so many women that are battling this! I fall asleep with tears knowing that now. I have always been an active person....I fought the "vanity" thing and I am dealing with that. I was in good shape, consider myself to be attractive, I worked out, ate pretty good, dont smoke, take pride in my appearance and BAM! my how things change. I am trying to get back to being healthy and some days my faith in God "which I have always had" seems to waver a bit. Especially during the chemo. I found myself asking why me alot. Now I just say why not me. I know it has changed me not only physically but emotionally mentally and spiritually. I thank Him for every day I have. One thing that really surprised me is how some people handled the "cancer". The people close to me i.e. family....who I thought would be right there seemed to become distant.
Even my own grown children....my 20 year old daughter went off into her world of drugs and stupidity My son who was a tad better he doesnt want to look at it....total denial. Some of the friends that I had sort of faded away. But man there are several of my friends who absolutley shocked me and really stepped up and came through for me. I am single and live alone and I remember thinking some days laying in the bathroom floor too sick to move away from the toilet....I am going to die here and no one will notice for days! I woke up on and off during the toughest times to my sweet dogs laying near me watching over me!
I just had my third 3 month check up. My CA125 was 4. It started at 796 before the surgery. After the surgery it was down to 37 and continued to decline during treatment. My first 3 month check after chemo ended last november was 5.6 then 4.4 and now 4. When all this started I had tremendous pain in my side. I thought it might me a kidney infection or stones or something. Got the CT scan then the sonogram. Doc said it looked like a cyst and should come out. Found a surgeon and went for the consult. She took my blood and talked about things that could happen.
That was the first time I heard 'cancer' but at that point it was only a possibility. I went back to work and finished the week and the day before the surgery I was to leave at noon. Doc calls me and says I got your blood results back....first time I ever heard of a CA125. She asked if I was sitting down....never a good sign. She said the number is 796....probably ovarian cancer...and I am going to have a special gynelogical oncologist perform the surgery with me just in case.
When I woke up total hysterectomy...spread through the abdomen stage 3. The good news was that I had been "optimally debulked" and it had not spread to any major organs or lymph nodes.. Later I would discover that my God had been with me all along.
Turns out that the oncologist, Dr Mark Messing, was the best there is and I have since developed an outstanding respect for. I feel like it just fell in my lap. Number 1 that is the type of surgeon that most patients would search far and wide for and number 2 that he was so experienced in the initial surgery that it is my understanding now that debulking makes a HUGE impact on surviving. Didn't know ANY of this going in. So a month later I start chemo. cisplatin IP then taxol iv then taxol IP....6 rounds. Talk about sick! But I was a healthy woman to start so I "handled" the drug well the doctor said. About 3 or 4 rounds in I thought I wanted to die. I only had to delay treatment once mid way through due to low blood counts for a week. Of course I went on leave from work....I couldnt function. period. All I could do was cry. Then the hair. I am sorry but bald is not beautiful...atleast not on me. I was able to manage to get out a few times and do a few activities. My friends made it a point to keep me entertained on the down side of the cycle when the body is recovering right before they hit you again and start the process all over. When I felt human enough I was able to take plane rides....see football games my Cowboys and my Sooners and do things I am passionate about. Took a ten hour plane ride to florida in a single engine. that was my adventure. they all said I was a trooper. i was so sick by the sixth round it was all i could do to drive to the chemo session fifteen minutes away without throwing up. Yes I tossed my cookies all the way there all in my car,,,arrived in vomit and tears. But I was determined to finish that session! So here I am a little bit of hair now back to work....worried about the tremendous pain in my joints. My hip is so bad i went to get it checked out....that arrogant doctor told me the only thing I needed at that point was a hip replacement. I laughed and walked out of his office as fast as I could. I am 44. the chemo I feel destroyed alot of cartilage in my body. The steroids made me gain 30 pounds. so it is a struggle to get this weight off and I have lost about 7 of it. the weight is making my joints hurt worse. I am trying everything....good food...essential oils....hot bath soaks....vitamins....supplements. you name it. I am nervous about recurrence of course. I want to be pain free....that is my goal right now is to be able to walk without feeling like I am 90 years old. There are so many different side effects and sometimes it seems that doctors dont really say that the chemo caused this or that. The numbness in my hands and feet is not quite as bad but for a while it was crazy! But reading things that others are going through makes me feel not quite as crazy and I am so thankful that I was able to get the responses from you fine ladies so thank you for the encouragement and God bless each and every one of you.

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• By AlyssasMom
• Posted September 25, 2009 at 5:54 pm
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Oh, wow! The CD, NED? Guess what? My surgeon is Dr. Boggess who's on that CD. I just saw him two days ago! I got the CD. It's great, isnt' it? I mean, it's great that these wonderful guys are doing what they are doing for women's cancers. Rock on! Btw, where are you from? I'm near Chapel Hill, NC (Pittsboro).
Darthi

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• By AlyssasMom
• Posted September 25, 2009 at 6:00 pm
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No problem, Amy. I'd love to help you through this. You can do this. Piece of cake. You will really feel strong after you've made it through--like you can do anything and get through anything. It's amazing. When getting chemo. , try this: breathe deeply. Thank God for allowing this drug to destroy the cancer cells. Envision seeing the chemicals wash over any lingering cells and destroying them. Drink lots and lots of water and envision the water washing out the dead cancer cells out of your body. Keep in touch. Thank you for your kind words. YOU have helped ME today. God bless us all! :-)
Darthi

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• By kimlyn1228
• Posted September 25, 2009 at 6:37 pm
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Hi tj. I am 42 years young. My dx was June 2009- 3c grade 3. I've had 4 rounds taxol/carbo. I start IP chemo cisplatin on Monday. Everyone says it's terrible but they don't tell you why. I will be finding out next week. I am petrified of recurrence. My CA-125 has never been higher than 11 so how will they catch it? In the meantime, I try not to freak out about things. My doctor says I'm anxious and has me on Xanex. I want to ask him what type and stage cancer he had and how he handled it but some people don't recognize my sarcastic wit for what it is. :)
You hang in there chica! We are all in this together!
<3

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• By KSD
• Posted September 25, 2009 at 7:09 pm
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Cancer has changed my whole life! It has given me the freedom to live like I always wanted to live. Cancer gives us permission to take care of US! I was diagnosed with stage 3C in April ( It took three different doctors, one was a specialist in women GYN surgeries, before my primary doctor sent me for a CT scan)----huge surgery that almost killed me---- the cancer had wraped itself around my colon, uterus, bladder, appendix and omentum. Started chemo four weeks later. I have managed to get through five IP and IV treatment with the last one (for now) on the 28th. Then the CT scan------I am thrilled to be having it in October so I will know what the future might hold for me. I can totally understand being anxious about having it show up again but I have made a decision that I am going to live one day at a time, as opposed to surrendering this day to worry about the future. I realized that if I do that, then the cancer wins and I won't see the gift of each day. I know I sound a bit like Pollyanna (you young girls won't know what that means!) but cancer has taken my strength, my enegy, MY HAIR, my time, the feeling in my hands and feet, my balance---why the heck would I want to give it anything else?Instead of asking "Why Me?" I ask "Why not me?" None of us are born with a free pass from heart ache and trials. This just happens to be ours. But, this trial can also be a gift of sorts. It makes all the trival things we used to get so steamed up about seem so silly. I am encouraged each day by the kindness and love that others have sent my way. My best friend was just diagnosed with cancer and starts her chemo the day I finish mine. Just to be able to be there for her like she has been there for me, has helped me want to keep fighting. As for the healthy eating---I go in spurts-----I go crazy organic healthy----and then I bake cookies or buy a cake from the bakery and go for it! I will pray for all of you----that you will try----just try----to live in the moment and not let this terrible cancer steal one more minute of our time here on earth! KSD

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• By abbaschild
• Posted September 25, 2009 at 8:29 pm
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One thing you can try is when you're going to soak in the tub, add epsom salts...it's really magnesium which helps your muscles relax...I do it all the time!! The magnesium will be absorbed thru your skin...very good for you!!

Blessings and hugs!!!

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• By lovemnms
• Posted September 25, 2009 at 9:19 pm
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I had my surgery 2 months before you. I try not to think about any of this and the days that I do I feel worse. I avoid reading statistics which don't help.

Look for fun things to do or places to go.

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• By bevl
• Posted September 25, 2009 at 9:22 pm
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Darthi,

My doc is Will Winter, the lead guitarist. I got the cd too. They're having their big cd release party here in Portland next month!

Bev

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• By wolfi
• Posted September 26, 2009 at 2:24 pm
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Hi there! Lots of good replies to you I see. You can come through this well my friend. I am a stg. 4 ovarian cancer survivor going on 14 years now. No recurrence to date.There are more of us out here. Keep the faith. Be well and take care of you. I am always around spreading hope and encouragement. Teal hugs, Jan

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• By hilary56
• Posted September 30, 2009 at 8:31 pm
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Hi Wolfi
It is so encouraging to find you in such good health after 14 years. Would you like to share with us the reasons you think you have come through stage iv without a recurrence. Many thanks.

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• By wolfi
• Posted September 30, 2009 at 8:52 pm
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Hi kiddo, well....I have no real answer for you. I maybe eat a bit better than I once did. I take basic supplements. I drink green tea. I try to stay strong as I can. I was dx. at age 58 . I am now 73. Don't feel like 73. What ever that feels like. I am always on the support boards for anyone who is in need. Above all if I may mention......a sense of humor always gets me through. Share more with you later as my meat loaf is about to burn.Yikes! Be well....Jan

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• By Rikku
• Posted September 30, 2009 at 10:03 pm
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I know this hasn't really anything to do with the topic, but you did mention the hair thing. I am the same, 25 years old, borderline cancer dx, and keep worrying with the surgery scars. I guess girls will be girls.

I try to keep my mind busy with work or study. I try to go to the gym, but there I do tend to think about "it". I try to go out with friends, (but choose them carefully, not the ones who are going to bring it up, even if unintentionally...).
Basically just keep myself busy. When my head is not focused that is when I tend to wander off and think "stupid" things...

Be well

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• By jeaniet
• Posted September 30, 2009 at 11:29 pm
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To kimlyn........my CA 125 was never above 18, so I know how hard it is to know how they will find a recurrence, IF it happens. For me, they use a different CA test. They tried a few different ones. Now, they use the CA 27-29. It is normally used to monitor breast cancer, but it was normal, then became elevated. They also monitor me with PET scans. Based on the 27-29, and a PET, they found my recurrence. I had no physical pymptoms at the timeof recurrence, but did start having some symptoms about 3 weeks following the PET.
So, you will learn to pay attention to your body, and ask your docs what they have planned to monitor you in place of the CA 125.
Jeanie

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• By hilary56
• Posted October 1, 2009 at 7:23 am
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Hi Wolfi
You are an inspiration to us all! Your sense of humour comes through even in your post. They say laughter can keep cancer at bay and I have a feeling that you possess that in abundance. You are 73 years young and, obviously, full of life. Yes, a real inspiration!

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