Newbie Here

MJatADG
  • By MJatADG · January 30, 2013 at 10:17 pm · 31 replies
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Just joined after my recent diagnosis of stage 3c ovarian cancer Nov 28th 2012, and extremely slow progression to recovery of extensive radical hysterectomy and additional surgery Dec 7th to abdomen organs and intestines and bowel. I am a 55 year old married mother of two college students who owned my own business residing in PA. Looking to learn as much as I possibly can of this new journey I am taking, hoping to find survival stories that kick the 20% 5 year survival rate statistics I have been given, right out of my consideration. I look forward to reading with you.

MJ

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31 replies    Reply

Argyl

Don't believe the stats. I was diagnosed 3C in 1999. Went through the standard treatment, did great, stopped eating sugar, stuck to the Blood Type Diet for Type O (I wouldn't recommend the protein sources for all types, though), and was in remission for at least 8 years. Got lazy about my diet, started eating junk again, gained weight, too much stress, it came back with a vengeance in 2010. Nearly died. This time mets to liver and lungs. Responded great to chemo again, have been in remission for 22 months, doing great.

My lesson: one never beats this disease completely (or at least it's very rare). But clean up your diet and lifestyle, and your chances for a long life are very good.

sherrir

I have been staged the same as you on Feb 24, 2011 at age 48. I went disease free for a little over a year and had a recurrence. My advice to you is stop reading statistics. Thats old news. Reading stuff like that will make you crazy. Your not a statistic. Every day there at new treatments coming out. When you read thats the info you want to focus on, the future, not the past. Im almost 2 years in and I feel great. Just started my second remission. Im in yoga and kickboxing classes. Life is good. Feel free to private message me if you have any questions I can help you with.

GratefulGrl (Inactive)
  • By GratefulGrl (Inactive)
  • Reply 3758073
  • January 30, 2013 at 10:46 pm
  • Report post

I was staged 3C in October, 2009, also had extensive surgery (as have most of us here) and am still around. Do NOT read or focus to the statistics on the internet. You will find plenty of inspiring long-term survival stories here, and even great stories of those of us who have been at it for a few years, not in remission, but living quality lives.

The most important thing for me was to find a naturopath who would chart out a program of diet, supplements, and other treatments that support my body and rebuild my inner terrain while I am undergoing chemotherapy.

afighter

I am 46 and diagnosed on 9/20/12 stage 4 OC. I have had the full hysterectomy, removal of the omendum, scraping of the colon. On this coming Tuesday I will have my 5th chemo treatment. They told me chemo would not work with the type I have. I have stromal cell. It is working! With the encouragment of family, friends and everyone here (they are AWESOME) I'm kicking it as hard as I can. You Can Do It!!!

HappyTurtle

I was dx stage 3c in Jan. 2008, just celebrated my year five cancerversary. Lots of bumps in the road along the way, but I'm still here. Outlook and attitude will carry you a lllloooonnngggg way. Stop reading about stats, like a wise woman told me when I first joined - no one has an expiration date stamped on the bottom of their foot!

Glad you found us, sorry you're here. The Teal Sisters on this site will be with you through everything, and I mean EVERYthing. Got a question or didn't quite understand something, come here day or night and ask away.

Turtle Power!

lochnestmonster

I am new here but old to this disease. My screen name lochnestmonster comes from my "rant" that we have more people looking for the lochnestmonster than ovarian cancer, and we don't even know it exists and it certainly hasn't killed anyone. We don't have a disease problem; we have a detection problem. I refuse to believe if we can put a rover on mars, we can't build a test for early detection of ovarian cancer.

Get thee to a major medical center. In PA, best bets are University of Pittsburgh (Magee Women's) or if in eastern PA, Fox Chase in Philly. Do not mess around with this. Hit it hard with chemo; clean up diet, eliminate stress and think positive. You can beat this; time to dig in.

L8keGal

I am new here also, am 52, and was staged 3c March 15 2012. Like you, also worry about the stats but have felt encouraged since joining this site a few weeks ago. I had a failed first surgery last March (too much cancer to operate - they closed me up after 20 mins); 4 chemos (taxol/carbo-platinum); another, successful surgery July 19 - removal of omentum, some other wandering tumours, full hysterectomy; then 4 more chemos. Finished chemo October 30 2012. Heading in to my 3 months check up next week.

The ladies here are supportive and know so much more than I do - for the first 9 months or so I was afraid to look for information, fearing that I was just toast and gonna die soon... It's not a good diagnosis, but there is a lot of hope to be had. Just this week there was a study published in Britain that had good results (can't for the life of me recall anything else about it though).

HeartsToYou

You know how when you go buy clothes one size fits you in this brand name and another
size fits you in another brand name? That's how statistics go. It's like WHO do they use
for models for either one!!!!
That's why none of us listen to them. It only makes sense. If None of us have the same
response to this disease both medically and mentally, how could statistics be black and
white when none of us are the same????
So don't go there.
Make your own stats and decide you're going to beat this. And take it One Day At A Time.
Small step approach.
Welcome btw- sorry you have to be here.
Hearts

MJatADG
  • By MJatADG
  • Reply 3758819 · In reply to 3758023 by Argyl
  • January 31, 2013 at 8:32 am
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After checking more into your mentioned type O diet, (since I am also type O), If you could be so kind to share more info on this, as for how strictly you are able to adhere to such diet regimen such as sample menus you follow or additional links, info would be greatly appreciated. I have printed out Dr Lam's pdf file of foods from his site but I am having most difficult time figuring meals with no eggs, dairy and grains of any sort, especially since I am not a beef eater. TYIA for your time.

blessedama

I have been in chemo for 10 1/2 years. So much for statistics.

ccdatty

Stage IIC PPC/OC 8/05 and still here alive and kicking. Go forward with a positive attitude and be your own best advocate in your care and you will do well. It is overwhelming in the beginning but it does get more manageable as time goes on and you will meet many great ladies hopefully in your treatment center andl, of course, here who can offer any information requested. We are all different; however, so what works for one does not always work for others etc. God Bless

BRCA2girl

Sorry you have had to join this club, but welcome! You are NOT a statistic as our other teal sisters have already pointed out. When I was getting ready to have my debulking surgery, my brother-in-law, who was battling pancreatic cancer, gave me very valuable advice: He said, "No matter what they tell you after your surgery, you just see yourself ALIVE!" I've done that ever since. I am 2 years 8 months out from my initial surgery with no recurrence! And my brother-in-law is amazingly going to hit his 5-year anniversary this March! So you can do this! We all will be here cheering for you!
Pat

Lrfroglady

My best advice is make sure you have a gynecological oncologist whom you trust completely. That way if you really don't want to read about all the possible latest and greatest advancements you don't have to. And you never know what is going to come your way that could be the perfect match for you. A year ago I was becoming deathly ill, to the point my husband had a meeting with my oncologist to see if he needed to get funeral arrangements ready. And now here I am with more energy than I've had in two years (aside from the stupid norravirus that hit me this week.)

And then give it all to God. He has your life in control with the best plan possible. It might have twists and turns along the way, but with His guiding hand you will be able to get through it.

MJatADG

Thank you all for your very inspiring stories ladies. I am so glad to have joined this group and look forward to learning so much more from you all along my way. I meet with my oncologist tomorrow to mutually agree that I am feeling strong enough to begin my Taxol/Carboplatin treatments every 3 weeks for 6 treatments. I will be in touch as questions may arise.

dwm26

I am also stage 3c diagnosed in march 2008. I also looked at all the statistics. When you figure in your young age of 55 and being fairly healthy other then ovca then the survival rates are much higher. I have 2 daughters 1 a year and a half out of college and out on her own the other did a year of college and is taking sometime off.

Argyl

I adapt the Blood Type Diet a la Paleo. I eat eggs, for instance, but only organic. I don't eat beef, although it says it's good for Type O. Not this Type O. For breakfast I do a veggies stir fry with 2 eggs (onion, pepper, mushrooms, two big handfuls of spinach, cook down, scramble some eggs, mix, and eat with salsa.

But I think it is useful with regard to the other lists. For example, I don't eat beans much anymore, but if I do, I eat the ones recommended on that diet. They are lower in lectins for me. And I select fruits and veggies from the list. I've never liked melons, and they are on my avoid list. Pineapple and figs, on the other hand, are on my "beneficial" list.

Search not only the blood type diet, but the Paleo diet. Basically, moderate servings of organic animal protein at every meal (i do fish and chicken and occasional turkey, plus the eggs). 7-9 cups of veggies a day, including 2 cups of the cabbage family (broccoli, brussels sprouts, cabbage, etc). Berries are good, many fruits are too sweet. Be moderate on the fruits, and only eat whole fruits, no juices. If you get a paleo cookbook, you'll find that flour is replaced with almond flour, and that you can actually do some yummy recipes that seem like the old stuff but are healthier. It's alittle tough to give up grains in the beginning, but you get used to it. When you're well, occasional brown rice or wild rice will be ok.

L8keGal

by the way re treatments, I started off every 3 weeks but my numbers didn't rebound enough (whatever they were) and I was moved to every 4 weeks with my team swearing up down and sideways that it didn't matter much to the outcome.... i ended up with 8 treatments and i'm not sure whether that's because of the increased time lapse or what.

my point being, you may find that your treatment is "fluid" depending on your response.

oh - something that I found helpful for my last three chemos, was in-home saline drips. But I coped well until then.

trust your team - the tools they have at their disposal now are markedly different from anything i expected (I recall stories of people moving their mattresses in to their bathrooms for the month etc).

good luck :)

MGLake

I was diagnosed with stage 3C ovarian cancer in June, 2011. I had a hysterectomy/debulking, then had 6 rounds of carbo/taxol and was in remission from November, 2011 till August, 2012. Second debulking on Labor Day weekend, then tried carbo/gemzar which worked well for a few cycles, but plateaued. Now I'm on Doxil and so far so good, second round is Feb 5th. The one thing I've learned is that they've come so far in developing so many tools to treat this disease and my life style continues to be pretty normal in spite of it all. ATTITUDE IS VERY IMPORTANT, along with a good, healthy diet. I cut out sugar, starches, milk products, and almost all carbs and concentrate on eating protein and fresh green vegetables. I take nutritional supplements that my doctor recommends that are not processed, but natural.

It's horrible that we all have contracted this disease, but I'm so grateful for blogs like this to share information and fellowship.

GratefulGrl (Inactive)
  • By GratefulGrl (Inactive)
  • Reply 3761870
  • February 1, 2013 at 12:02 am
  • Report post

I strongly suggest that you seek out a natural nutritionist or a naturopath for advice on your diet. It is best not to follow advice online. We don't know your current lifestyle and what your inner terrain is like. Those of us who are under naturopath's care in addition to oncologists are on different eating plans -- slight differences yield specific results for each individual. I know you may feel overwhelmed right now just starting out with chemo. Since you're having it every three weeks, perhaps you'll have the time and energy to find an alternative practitioner who can help you design the appropriate diet for you and also help you with the right supplements your immune system needs.

And, I disagree with anyone who says this is a chronic disease that we will never be rid of. There are people who have been free of OVCA for over 25 years. That isn't chronic, in my opinion. There are also naturopaths who believe they can help your body get to a state where it can no longer allow cancer to grow.

Argyl

i totally agree, Grateful Girl. I make general recommendations about diet that are fairly conservative re: what we know, but tweaking it takes a specialist knowledgeable about your specific terrain. I don't know any naturopaths who would recommend sugar, though, and more and more research seems to point to processed carbs in general not being good for us. And organic or grass fed can only help.

The blood type diet is something I have personal experience with, that's all. From my viewpoint, it can't hurt, since all of the nutrients we need can be gotten from a variety of foods. But I've adapted it, personally, in light of new understandings about carbs and protein. whether to eat red meat is something only your naturopath can tell you...

There are many books out there to read. Anticancer is one, and it's very good, although it does allow whole grains.

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