Stage 4 /Grade 3

• By strega
• Posted November 3, 2009 at 1:04 pm
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I was diagnosed with stage 4 very advanced ovca in March 2008, I was operated on and debulked to the best of my surgeons ability. I have a colostomy and was given approximately 3 mos to live without chemo. I have been on taxol and carbone very week for 3 week and then off for a week My ca 125 went down to 44 from over a 1000 for about 11 months and then started going back up. My cat scan looked good but still some cancer. I had to be placed on a six month chemo vacation because the chemo really compromised my blood work and I had to have blood transfusions often. I started doxil every 28 days and my ca 125 will not go below 70. My cat scan shows that I am stable but I have plenty of cancer every where. With the doxil my hair has grown back. My blood work is normal and I can drive and live a normal life. The only side affect of doxil is neuropathy and burns on my feet and rash whic is not too hard to live with. I will probably be going on a chemo vacation the next time i see the doctor. I am 70 and I am on pain medication which helps me to feel ok. My oncologist has 2 other women like me who are in their 90s. The cancer has never gone into remission. they are still on chemo for 4 years and are living a fairly normal life. Keep praying and listen to your doctor if he is good and inform him of facts you may learn from this site before taking anything without his or her knowledge. My oncologist told me that she lost apatient from drinking green tea because it interfered with her chemo and patient should not have died.

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• By Milashka
• Posted November 3, 2009 at 2:08 pm
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Stage IV does not have a very good prognosis, you may already know that from your doctor and statistics BUT - everyone is different and there are exceptions to the rule.

I know someone whose mother had stage IV in the 1970s when the treatments were much more limited, and she is still alive today (in her 80s by now). I have come across other stories of stage IV survivors.

That said, a lot depends on a patient's age, overall health (aside from cancer), response to various treatments, etc. This disease has so many variables it's crazy! What works for one woman may not work for another and vice versa.

Best wishes and never give up hope! Ever!

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• By ohmama123
• Posted November 3, 2009 at 2:58 pm
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I am stage 3c - diagnosed March 09. We are similar in age and our kids ages. There are women on here stage 4 who were diagnosed 10 years ago and have come to share their stories! They inspire me to keep my fight up. The best advice I have read on here though is to be your own advocate. Educate yourself with the options that are out there and ask questions of your doctor to make sure they are trying everything possible. And if your doctor isn't willing to discuss other treatment options or begins to doubt your options, then empower yourself to find a new doctor. You may have a fight ahead of you, but you also have to tell yourself that you have the strength to fight. Be your own success story Shari and share your story with us! Blessings to you --
Kristin
PS:
http://www.inspire.com/groups/ovarian-cancer-national-alliance/discussion/t welve-years-and-going-strong/
I found the above post about a 12 year IIIC survivor - but she mentions knowing someone stage IV who was platinum resistent and a 5 year survivor (scroll down and read other stories within the post!). Search and your will find stories of hope on here Shari - my best to you!!!

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• By Sandylee
• Posted November 3, 2009 at 2:58 pm
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Hi Milashka...
My name is Sandy and I have had OV since 99 and I'm still fighting it. I am stage 4, I don't know my grade. I have become platinum sensitive as well. I'm on Avastin, Sorafinib and Taxol. My counts are low and I'm doing well. The Avastin has worked cutting off the blood supply to the cancer cells. I have much hope!

Sandy

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• By TealOak
• Posted November 3, 2009 at 9:39 pm
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I was dx with stage 4 clear cell 10/08 at age 43. Mine was also very advanced--they removed spleen, appendix, part of liver; ablation on diaphragm, bowels, etc. I had optimal debulking and initially appeared to have a response to Carbo/Taxol but in the end after 9 cycles I had disease progression.

I am currently on a phase 1 trial of Doxil, Avastin and Torisel which is decreasing my tumors but kicking my butt. Presently I have 2 liver mets and then a bunch of lymph node involvement.

I definitely struggle emotionally knowing the statistics and being a Toxicologist by profession, I just cant ignore them. But...I keep saying my mantra ala Randy Pausch--you cant change the hand you are dealt, just how you play the cards.

Teri

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• By GEPI
• Posted November 4, 2009 at 8:44 am
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Hi,

Ohmama 123 thanks for the trail and Shar 123 thankks for asking. So encouraging just when I needed it.

GEPI

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• By RhodaLois
• Posted November 4, 2009 at 10:49 am
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My Aunt Sylvia hated doctors. She developed breast cancer and my cousin, her daughter, said she actually had sores on her breast from it, but she refused to go to doctor. She lived 40 years beyond the onset of the breast cancer, died at 95 or so from plain old age.
This is not to say we shouldn't go to our beloved docs....just everyone's case it different. Obviously she had a very slow growing cancer situation.

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• By Marguerita
• Posted November 4, 2009 at 12:19 pm
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Hello; I had a borderline ovca in 2001, and they just removed my ovaries and uterus; no chemo. I was told if it did come back , it would be 20 years down the road; well 4 years later it came back manifesting itself with ascites. I had debulking surgery with IP and IV therapy of cysplatin and taxol. went into remission for a year, then my tumor markers started going up. Went back on chemo with Carboplatin and taxol for 8 months. Went on a chemo holiday, during which I took tamoxafen. My markers went as low as 121. Then they started going up fast, and now I'm on Doxal. I have a spot on my liver and a couple of other lesions in my abdomen. I'm sure hoping the doxal will shrink these tumors and extend my life. My dr. told me that the ct scan always underestimates the cancer....so I'm not sure if I should go on a trial or what...also, my kidneys are damaged from the cysplatin; they work 30 percent so i have to use chemo drugs that will not damage them more. I am 48 yrs. old

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• By shela
• Posted November 4, 2009 at 12:48 pm
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Hi, Here's a hopeful story (although i don't want to jinx it) I was DX as a Stage IV in the Spring of 2004. I do not know what my Grade was. I was 62 at that time. No prior warnings. I had total hysterectomy & debulking & started standard Chemo in June 2004. I did not have a port.Fortunately, I am platinum sensitive. I had a fabulous gyn-oncologist surgeon, plus an expert oncologist, I have not had a recurrence, even though I have been & continue to be carefully monitored, by scans, CA125 blood tests, examinations, etc. I live in the D.C. area and would be glad to share my doctors names offline. Thand G-d there is hope for the Stage IV survivor.
Take care & do not give up hope, Shela

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• By MaryW
• Posted November 4, 2009 at 3:15 pm
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Hi Shari, I was diagnosed in 4/2004 with 3C, grade 3. Have been on several different chemos and when one stops working, we try another one. Topotecan worked the longest for me. I am also platinum resistant. So it has been 5.5 years for me and I'm doing pretty well. I wish you well. Statistics can be a bummer if you pay attention to them, but I figure each one of us can be an exception!

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• By Sunny01
• Posted November 4, 2009 at 10:16 pm
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Hi Shari!
We live in the same state...enjoying the cold weather already!?! I am Stage IV (Liver mets and several enlarged lymph nodes) diagnosed in August 2008. I had the standard 6 rounds of carbo/taxol IV, no IP plus the GOG0218 trial that gives you Bevacizumab (Avastin) or a placebo. I will finish the study December 4, 2009, which makes me nervous, I am termed stable with my disease, and I think the Avastin has a lot to do with that which is why I am scared to come off it. I have been hinting around to my oncologist that I want remain on it, and even went to MD Anderson to get a second opinion on continuing it. So far, my last Ca 125 was 7. Wishing you success with your treatment!

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• By quacker
• Posted November 4, 2009 at 10:42 pm
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I was diagnosed stage IV in December 2007, had 6 rounds of IP carbo and IV topotecan. Went into remission but relapsed after 4 months. Then did only topo, which did not work. Two months ago finished 6 rounds of IV carbo and Gemzar. Had a dramatic response for the first 3 cycles, then the numbers started to climb again. I am resistant to most chemos, can't tolerate any more, not a candidate for Avastin so am relying on alternative treatments. I have no idea what my CA 125 is, but will have another test at the end ot this month and a PET scan early in December. I feel wonderful; my memory and energy are back to normal. I've decided though, that if I do have a rapidly growing recurrence I will get a biopsy and have tissue sent to the Weisenthal laboratory in California to find the best combo of chemo agents. They test unusual drugs in different combinations so patients don't have to go through trial and error to see if their chemo will work.

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• By BarbP
• Posted November 4, 2009 at 10:49 pm
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Strega, I know you shouldn't take supplements while on chemo without your dr's approval...because they can diminish the effectiveness of the treatment...but, I have never heard of green tea being a problem. I find that really hard to believe. Can you elaborate on why the dr felt this was an issue in the loss of the patient. Thanks...

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• By JanKickingCancer
• Posted November 5, 2009 at 8:04 am
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I, too, had debulking surgery with removal of 2- 5 cm tumors, a part of my liver taken out and part of my bowel. I had 6 rounds of carbo/taxol IV and 2 rounds of cisplatin IP. Phew...
Now on study drug, vaccine once a month. 5 Clear CT scans in the last 14 months! YEA
Next CT scan on Nov. 30th! I am having a Colon Scope also on Dec. 4th due to my father that had Colon Cancer. Just precautionary! They said they are finding a tie to woman with Ovarian Cancer and Colon Cancer. I have/had (dont' know what to say) OV stage 4. I had 2 spots on the bottom of my lungs too! I feel really good and I say that quietly. I go to Sloan Kettering in NY. I love it there and my chemo doctor and surgeon are wonderful! So that's my story! Good news, right?
Good luck on your journey! Hope you find it successful!
Jan

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• By strega
• Posted November 5, 2009 at 1:59 pm
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Hi Barb
There are a lot of believers in green tea. According to my oncologist one of her clients insisted on drinking green tea and it interfered with his chemo. He should not have died because his cancer was not that far advanced. Thaat is all she told me and I do not want to go into it with her. Maybe he drank too much.

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• By SONGBIRD49
• Posted November 5, 2009 at 2:04 pm
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Dear Shar123, I am also Stage IV and platinum resistant. Don't know what Stage. I had debulking surgery (along with my gall bladder) so was gutted like a fish!Sept2008 and been on chemo since Nov2008. Took a long time to heal but my CA at the start of chemo was 254. Today it rests at 208. But have had 4 digit #'s and was as low as 60 once. Today I am taking Avastin with Taxol. Those of us with platinum resistance don't have alot of choices for chemo as most of the MANY chemos they have are chemical. That is the big difference and we're considered the worse of Stage IV OVAC. Like can it BE any worse? I went from the initial Taxol/Carbo for 7 months until I developed the reaction to the Carbo. 2nd Phase was Doxil (which delivered me nothing but PAIN) and I told them to take me OFF it after 2 months having also gained 7 liters of acietes. 3rd Phase is Avastin with Taxol and my 5th scan from day 1 was last week and to see words like "stable" and "decreasing tumor size" and going from 3CM tumor to mm (nothing) are my success stories ON PAPER. Having a positive attitude as I put on a wig every day and makeup to look like a call girl and go to work is another of my success stories. I have my side effects under control which by the way, being platinum resistant keeps us excluded from alot of the heavy laden side effects from the drugs we can never have so our poisons are fewer to chose from and not so bad ... I believe being this platinum resistant to have gotten the better deal with this lousy disease in the shorten run for our lives. With Avastin goes the horrible fatigue, I have gained some weight from the weekly steriods but don't even care. The first cycle of Avastin brought my #'s from 4 digits to 184 CA; ask your oncologist if you can have this. Insurance companies pay it because they call you "recurrent metastatic cancer" @ Stage IV. I still have some problematic tumors but for the most part consider myself very lucky these days and if all I am to have is 3 years I am thankful I am on my fee and able to have my career and travel (though not like I am used to). Last year I had to sit home in a chair for all of the holidays I was so sick so this year is a success story all of its own for me getting to travel to spend both them with my family and went to Alaska this past June. I am glad to see you use the phrase "success stories" instead of "survivor stories". From day 1 of my disease for 6months I went online @ National OVCA and read survivor stories of all cancers just to bring me UP. Going bald did not hurt at all but as only woman KNOW vanity is alot of who we are. And to deal with this deep down I knew that being a survior were those of us doing this every day in spite of how we feel/look not just awarded to those in "cure". I am told I will never see remission. It does not deter my HOPE. So the words survior/success stories is a together-word for me. I wanted to use a better word but you must know my chemobrain is kicking in today! I'll now wake up @ 3AM sitting up in bed saying the word I wanted to use.
Sounds like your latest scan is quite a success story in itself. CA spikes so I don't know what my trend # is but once we see decreasing tumors regardless of CA I guess we will know for sure. What are you taking now Miss Survivor/Success Maker?, Ellen

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