Survived 32.5 years...where are you???

• By esther3kids
• Posted June 10, 2009 at 7:26 pm
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Note to FavoriteAunt: I was diagnosed at stage IIIc, I'm just curious, how many rounds of chemo did you have? I had four so far and I can't wait to get it over with.

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• By jenniwall
• Posted June 8, 2009 at 2:00 pm
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i am glad to see some long term survivors b/c i was dx 3c epithial ovarian cancer at 28yrs old in 2007 and now it is back 1 1/2 years after my last chemo and found out the day after my 30th birthday. I was wondering if anyone is using more natural cures to help them ???

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• By verlinda
• Posted May 7, 2009 at 10:11 pm
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Ladies,

Thanks for the inspiration!

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• By NBoerema
• Posted May 7, 2009 at 11:56 am
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Hi
This has been so encouraging. I was diagnosed IIIC ovarian/peritoneal in 7/2002 . I had a C-125 of 91,500 at surgery, something my Dr had never seen before. With 6 months of Taxol/Carbo and 6 months of maintenance on that, I was sure I was cured. The neuropathy was horrible and the leg cramping as bad. My dr, told me 6 months later when my C-125 rose to 1000 that I was beyond help and nothing they could do as I was surely full of it again. I said that was unacceptable to me and asked for a 2nd opinion. I went to the Dr my friend had and gave him all my records. I did have a hernia to be repaired so that was done. A 2nd debulking had been ruled out however the hernia was so very large, he had to do a full incision and did take a look around. I rememver the first thing he told me after surgery is "you are not full of it" haha.
Anyway I had full body/adominal radiation which was very difficult and had no problems until now (will be 5 yrs in July). I had had diarrhea since 6 months before diagnosis so of course was very depeted from that and rdiaton. I had a long time getting energy back and diarrhea was always there. Was on opium 2-3 x daily which did control the diarrhea but again, this is getting long, discovered I had C-diff. After being treated for that, no diarrhea after 5 years. You can imagine how I felt. I could actully go to the grocery store or to the mail box.
Now my counts have risen to 4600. It is a dilemma as I feel so good and my Dr says I give such high counts, we don't really know my norm but the trend has been going up every couple months. Am praying this week when I get checked again, they at least stabilze but there is so much out there we haven't tried. Just don't want to.... My oncologist isn't one to jump right in and do chemo. PET shows 3 swollen lymph nodes, 2 mm each , 2 in chest , one in groin but all major organs good. Help.
Also, had genetic testing as 3 nieces have had breast cancer before 30 with one a 2nd recurrence and was positive for the BRA2 so now mastectomy is suggested. I hate these decisions. I am grateful for these 5 yrs when they gave me 20% of lasting 2 but am really in a quandry about the breast etc. I am 65 but their scare tactics aren't helpful either. Any suggestions?
I really wrote this to encourage you guys. I feel better than I have felt in years really, and just don't want that to change. 5 years and going...Lord willing.
Nellie

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• By Kellie63
• Posted May 7, 2009 at 8:16 am
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Hey once you have found her why don't we all celebrate each month, year or day we have made it. Why don't we all post how long we have survived.

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• By lovemnms
• Posted May 7, 2009 at 7:33 am
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Thanks to the long term survivors. It's good to hear positives when we can.

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• By nana55
• Posted May 7, 2009 at 1:10 am
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Another 30 year survivor.

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• By 35yearsurvivor
• Posted December 23, 2008 at 3:31 pm
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As my screenname implies, I am 34.5 years post surgery for ovarian cancer - 35 yrs next August.

I had a complete hysterectomy plus melphalan and megace (an anti-estrogen). I've had some serious bouts of depression - the first one being a few years after the cancer surgery when I was overwhelmed at being vigilant for any sign of recurrence.

For me, it turned out that Prozac was a wonder drug. It took a couple more bouts of depression and constant suffering from panic disorder before I entered a clinical trial and discovered my symptoms disappeared almost immediately. I mean - within 24 hours, which is very unusual.

I went on my merry way until the anti-estrogen I was prescribed for my breast cancer apparently "turned off" the Prozac. After a few months of serious depression, I found a doctor who specializes in medications to counter side effects of cancer treatment. She started me on Cymbalta and again, the lifting of symptoms began almost immediately.

The point is, some depressions have a biochemical - not cognitive - cause. If positive thinking doesn't work, don't despair - try a pharmaceutical, and try several if the first doesn't work. Positive thinking is a whole heckuva lot easier when a biochemical cause is neutralized first.

Just my $.02

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• By gpawelski
• Posted September 16, 2008 at 12:49 pm
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Thanks rhino. Alkeran (Melphalan).

Leukeran (Chlorambucil) was the other oral-dose cancer drug for ovarian cancer back then. It was what my wife used. Oral chemotherapy drugs are found to treat cancer effectively and enhance the quality of treatment for cancer. I know it did for her. Whether or not they are still advocated, some thought-provoking oncologists still use Alkeran and Leukeran, when indicated.

I betcha Alkeran wasn't as nasty as the Taxol/Cisplatin regimen you received. My wife would tell me it was the difference between day and night (Leukeran vs. Taxol/Carboplatin). Of course, resistance was the cause of most of her side effects with Taxol.

The jury is still out on how ovarian cancer spreads. As less is known about this disease than other cancers this has not been definatively answered and there is controversy among the ranks of researchers and clinicians. Many believe it does not spread via the lymph and spreads through cells shedding into ascites in the abdominal cavity and then seeding in distant sites.

It does spread this way but is probably not the only way as it is found in lymph nodes as well. It has long been believed that it does not metastasize to the brain, however more women are developing brain mets. One school of thought believes that platinum and taxane drugs maybe weakening the blood brain barrier but that does not explain every instance.

Most of us think of cancer as a dealy disease if left untreated. But there are microscopic cancers that will never cause us problems. Although pseudodisease is most common in prostate and breast cancer, and an issue for kidney, melanoma and lung cancer, it can happen with ovarian.

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• By rhino718
• Posted September 16, 2008 at 12:10 pm
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the oral chemo i was on was nasty drug called alkeran they do not advocate it any longer as far as i know. was on it after it came out of so called remission first time. I have since figured out that as long as you have these "seeds" they refer to you will have recurrent cancer. These seeds are inmature cancer cells some die off and others float into lymphatic system and attach themselves to epithilu tissue and start to grow. usually takes 3 or more yrs. for them to become large enough that you notice. by having csan every yr. you can find them faster. They just need to find the right treatment for all. Hell i waited over 30 yrs for them to admit that these "seeds" were new cancer cells. and that they hide in the pelvic lining. So i guess i wasn't crazy. They keep looking for the needle in the haystack and its right in front of them.

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• By rhino718
• Posted September 16, 2008 at 11:56 am
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Patty--the cancer has never been in remission. It was so slow growing that i nver knew when or where it was also no elevated CA125. I have since been able to tell when i am getting new growths. I get an over whelming desire to sleep so much so i can't keep my eyes open and it can happen anytime of day. I finally figured out that it needs what ever protein my body makes to feed itself. When they have grown to the size they want to be i loose the sleepiness. Also my eating habits change and my body functions. So i'm sure these have occured with you and many of the other women out there. Everyone needs to pay attention to their bodies. You know yourself better than the doctors do and they should pay more attention to what you have to say. I may be alittle worse for wear but i won't do chemo(does not work on low grade ovc) and i won't be a" well we should try this it might work." No thanks i like having some quality of life. I don't advocate this to others as it is a personal choice. Me I'm not afraid of the cancer as much as i am what they want to give us for it. Been there done that won't go there again. They don't tell you all the reprucussions that can come form the the chemo. Hving ahad 5 treatments of taxol/cisplain that did not work they managed to desory the integerity of my vaculars system and i have COPD because the lung tissue was thinned down from the drugs. So between the man upstairs and myself i have managed to beat the odds and the doctors. Amazing what our bodies can do for us. Sure does make the doctors wonder, which is a good thing. So girl don't sit around waiting and wasting your life , get on with it. if you want to call me my # 561-333 6768 and iam home after 7. I also work everyday. LOL:)

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• By Rose2
• Posted September 15, 2008 at 8:27 pm
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Eveski, What stage were you diagnosed with 26 years ago? Most of us are in later stages, I am in stage IIIC.

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• By acosta1027
• Posted September 15, 2008 at 7:11 pm
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I just read the posting by the lady who accepted hospice and was quite upset by it. Finding this posting reminds me that there is hope and many do survive this horrible disease! Thank you for initiating this discussion!

JoAnne
Diagnosed 01/07
Stage IIIC

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• By grammy_linda
• Posted September 14, 2008 at 11:45 am
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gina
most likely found her OVCA at early stage ( again most likely by accident) I personally know that more than just one has survived over 30 years.
My younger sister was a 3c at diagnosis and told when she left the hospital after initial surgery( and was going to do the standard protocol for chemo after max debulking and second look surgery-with a top specialist in OVCA Scott Eisenkop) that "she had every right to a normal life expectancy!" she is now 7 years without any recurrence.
oops just read that she responded earlier....and answered that question.
as for years of testing, my grand mother was given carbo/taxol as expermental in 1962/ as was her sister in 1960 ( both in San Francisco at the Army base hospital)
Hugs
Linda

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• By sbender3
• Posted September 5, 2008 at 2:03 pm
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IT IS HARD SOMETIMES TO KEEP THE SMILEY FACE-IF IT WASN'T FOR THE LORD, AND HIS PROMISES THAT SCRIPTURE TELLS US THAT THE DEVIL IS LIKE A LION ROAMING AROUND SEEKING OUT WHOM HE CAN DESRTOY-BUT THOSE OF US WHO HAVE FAITH, REALIZE THAT OUR BRETHREN THRU THE WORLD SUFFER THE SAME AFFLICTIONS. AND AFTER THAT WE SUFFER A LITTLE WHILE, GOD WILL STRENGTHEN US, SETTLE US AND MAKE US WHOLE AGAIN. THOSE WORDS GIVE ME STRENGTH, KEEP ME GOING. THE PAST 2 YEARS HAVE GONE SO FAST-NOW I HAVE STARTED MY THIRD YEAR-I MAY NOT BE CANCER FREE-BUT I AM A SURVIVOR EVERY DAY I LIVE WITH THIS DISEASE, AND I CHOOSE TO LIVE A LONG TIME.....GOD BLESS. SHERRY

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• By MrsSumners
• Posted September 5, 2008 at 1:26 pm
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SBender3,
Good for you! I am glad I wasn't there.. that situation you experienced made me burst out into tears- how frustrating that the awareness of our Cancer is so dim. We have the best attitudes and strength though!! KUDOS to all of you!

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• By Jean1
• Posted September 5, 2008 at 12:51 pm
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Wow, I'm so glad to hear these disscusions. I had stage lll three years ago and you just gave me hope!.

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• By gina67
• Posted September 5, 2008 at 12:18 pm
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Hello gikgik,

Just wanted to say that I do not have ovca, I apologize if I misled you. My wife Johanne has stage IV ovca. She is not much into using the computer, but I very much appreciate being able to come on this site and reading the stories here. I always pass the info and stories onto Johanne and she is always happy to hear about the survivor stories.

Take care,
Gina

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• By gpawelski
• Posted September 5, 2008 at 11:40 am
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Gerry (rhino718)

I am interested to know what "oral chemo" you received back in 1971. My wife had been diagnosed with ovarian cancer in 1972, when she presented with a left DVT and pleural effusion. Pleural effusion is evidence of stage IV disease. She received talc pleurodesis, which is common treatment modality for patients with malignant pleural effusion, secondary to ovarian cancer. She was treated with total abdominal hysterectomy and Chlorambucil (Leukeren), an "oral chemo." She went 24 years before experiencing any recurrent ovarian cancer. Like you, Taxol did not work, after her first metastatic recurrence to her diaphragm in 1996, after having a extrapleural pneumonectomy.

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• By gikgik
• Posted September 5, 2008 at 9:46 am
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wow!!! hi ladies ... i was inspired with the stories of Gina & Eveski.oh la la la ...you a real champion guys.I really need this inspiration. We will survive. God Loves us.

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