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So discouraged
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An_223914 posted:
My CA 125 levels are not coming down as my doctor had wished. After many chemos it's still at 70 and went down only 3 pts. after 2 carbo/taxol treatments. My oncologist said to me "that's not good, not good" but never said anything about lots of options etc. nothing good. I took it as a death sentence even though she is going to try another chemical next Tuesday (I forgot the name) so that's something. But she sounded to me like there were not a lot of options.
Maybe I have the type of cancer that doesn't have a lot of options? Is that possible? I really don't know what I have or have forgotten it.

Thanks.
Reply
 
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lquill responded:
don`t get to down in the dumps. My daughter had stage 4 ovarian cancer after many treatments she went down to 3 on her ca125. that was three years ago. She has had many different types of chemo and her ca125 is now up to over 800 and she is now going to be going on a chemo called Doxil. we have never ask what the out look is because she has two children, is a widow, and 46. we just do not want to know!
 
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wee1np replied to lquill's response:
I agree with Iquill-- don't lose hope, and try to keep a positive attitude. My first run with taxol/carbo lowered my CA 125 to 26, and then it started to drift up again to 200. I was then on Gemzar/cysplatin, and my number continued to climb. Now it's Doxil/Avastin, and finally trending downward. Turns out I'm in the minority with platinum-resistant cancer. There are lots of chemo drugs available to us now (thank heavens). If you're not happy with your oncologist, you are entitled to a second opinion. Good luck, and keep the faith. Ovarian cancer is not the automatic death sentence it used to be, but it can be very frustrating for both you and your doctor. Try not to lose hope.
 
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mst65 responded:
I know a month has passed since your post. I hope that you are finding some good news. I was diagnosed in January of 2009 with Stage IV ovarian cancer.
Here are some things I know:
1) Carbo/taxol is the most effective treatment
2) There are many other treatments. Among them:
Doxil, Gemzar, Topotecan, Etoposide
There are probably some others I am forgetting. So far I have had carbo/taxol and then Doxil. I have just switched to a new drug because the Doxil stopped working.
3) Ovarian cancer is aggressive. But there are treatments that allow you to live with the cancer. Many people with ovarian cancer will have recurrences of the disease after getting to remission. Some people (like me) don't even get to a sustained remission. Even so, I am healthy, feel good and living each day (and planning to live a long time!)

Dealing with cancer is very stressful. It has helped me to have a good friend accompany me to the oncologist and take notes. I also find strength in a local support group. I personally know several women who are more than 13 years out from diagnosis. So people do survive.
Michelle
 
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msgalindo replied to mst65's response:
Hello. My mom was recently diagnosed with ovarian cancer. No one in my family has ever had cancer, much less this particular type of cancer. Therefore, it is a learning experience for my whole family. My mother is 64 years old and is one of the strongest woman i know! I don't say that just because she is my mom, i say it because she's been that to us and to everyone she knows. I have been trying to do some research to help us all with dealing with everything going on. If anyone could please answer this question? My mom has built up fluids in her stomach, does anybody know why or where it is coming from? I understand the bloating and swelling although this is just fluids in her stomach, just last week they took out 6 more liters of the fluid and today they are suppose to be taking out some more. As you have stated, dealing with cancer is very stressful, but i'm glad i was able to see stories from others that show signs of encouragement and help. No one should ever grow discouraged about anything, always accompany yourselves with positive caring and loving people. We may not like to hear bad news or wonder about the what-if's but remember we are not given anything in life that we are not able to handle! thank you for your time
 
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2010july replied to msgalindo's response:
Hello the peritoneal fluid was explained to me by a doctor like this-the implants or islands of tumor on the peritoneal tissue is a spread from the ovaries. A persons body will pull fluid (from the blood) into the peritoneal cavity to try to heal the tumors. Thus the patient gets the belly fluid.
My 87 year old mother just thought her pants were getting tight but she was so big in her belly I knew something was very wrong. She has now completed her 6th chemo treatment. While it has been a rough 6 months we have been able to find resolution for all the side effects she experienced. I think she was taking a cisplatin/taxotere combination. Her CA125 did come way down but now I don't know what to expect. At her age I am afraid more treatment will be devastating.
 
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Curlsgalore responded:
My dear friend,

Never give up hope! I had Stage IV colon cancer and was told I had 2 or 3 months to live. I was shocked to say the least. Well, After a year, yes a year of chemo, I have been in remission now for 5 years and doing great. I know I have a different kind of cancer, but miracles do happen and I am praying for a miracle for you, too. I encourage you to do all kinds of stress relieving exercises you can, such as easy yoga, centering meditation, positive thinking, and letting friends do everything they want to help you and love you! All of these things were a godsend to me. My church and work friends were always praying for me. I will pray for you!

Curly girl on the west coast!
 
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ovarianmama replied to mst65's response:
My sister has Stage IV Ovarian, clear cell cancer. Her CA 125 went down from 135 to 30 but only for 5 weeks. Since then it has been a pretty steady upward climb. She has had the ususal meds after the first round with Gemzar, Topetecan. Her major problem is blood clots. These have prevented acces to administer the medication. Her number is now 170 and she has entered a trial to see what can be done. They put in a port but it is risky if it will work. She had a pick line that had to be taken out and she has had at least 3 clots. The coumadin failed and now she is on 2x/day shots of Lovenox. Has anybody had a similar experience and what do you do? She is very down and nothing seems to go her way. Thanks!
 
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tharmon responded:
Seek Nartural alternatives. Read the book by Susan Sommers, Doctors who are Curing Cancer, I think you will find this life changing.
 
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The_Captain responded:
It has been reported by the US National Cancer Institute that asparagus is the highest tested food containing glutathione, which is considered one of the body's most potent anticarcinogens and antioxidants. Walnuts are also high.

The popular recommended dosage is this: puree the asparagus. Take 4 tablespoons in the morning and 4 tablespoons in the evening. Every day.

Good luck.
 
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fizdisney replied to wee1np's response:
You know I am platinum resistant also. I don't like that but it's good you said there are lots of options available. My numbers are falling with taxotere/Avastin but I'm hoping it continues and I don't become resistant. I'm now at 44 and hope for another big drop again. I just had more chemo this past Friday. What does your doctor say about your resistance? Mine looks worried all the time. Is he/she hopeful?
I am trying not to lose hope and most of the time I succeed since I really feel fine after the effects of chemo wear off.
I wish you luck and best wishes.


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