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Questions about my mom's ovarian cancer (sorry but long) Questions about my mom's ovarian cancer (sorry but long)

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  #1  
Unread 02-26-2004, 08:55 AM
Questions about my mom's ovarian cancer (sorry but long)

Hi all,
I used to be a regular around here (Hormone Jungle) and would occasionally visit this site because my mom was diagnosed with ovarian cancer in August of 2001. I believe her staging was IIIc at the time of her surgery.
Her first chemo treatments of taxol/carbo went very well and in March of 2002, after 6 treatments and a CA 125 of 10, she was considered in remission (I think). She continued to see her oncologist, first every 2 months, then 3 months. Her CA 125 climbed just a little during the next year or so. My dad passed away on May 15, 2003. Her regular appt. was on May 21 and we decided to go ahead and go, even though we were exhausted from everything else going on. Her appt. went very well, and her CA 125 was 17 and he said he did not need to see her again for 4 months and we were overjoyed.
In July she began not feeling well, couldn't really tell what was going on, but decided to see her oncologist just to check things out. Her CA 125 was 65. Her ordered a CT scan and found things brewing again around the tube that runs from her right kidney to her bladder. She had to have a stent put in to keep this tube open and not run the risk of kidney failure.
She began a regimen of taxol/carbo in in September. After 3 treatments, her CA 125 continued to climb, so in December, she began Doxcil. Again after 3 treatments, her CA 125 is now at 406. So, after 6 chemo treatments, things look terrible.
What do we do now? Her next appt. is March 10 and I want to ask so many questions, but I do not know where to begin. She did have alot of abdominal fluid, but is now on mild lasix and has lost 10 lbs (she only weighs 101). She is in pain, shooting pains down her right leg and her back. My mom is one of the toughest people that I know, but this pain is knocking her down, and she is quite depressed about it. She can no longer do the things she enjoyed doing; she can not walk very far at all because of the pain.
I am getting really scared for her. I just lost my dad, I am not ready for this again. I really hate to see her in pain.
I hate to ask such a bleak question, but has anyone been doing this poorly, but still managed to pull through for a while?
What should the doctor do next? What other chemo regimens for ovarian cancer are there and the side effects ?
Thank you all for listening to me, sorry I rambled.
Thoughts and prayers to all of you.
Rose
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  #2  
Unread 02-26-2004, 09:02 AM
Questions about my mom's ovarian cancer (sorry but long)

Hi Rose

I am so sorry you are going through this Your mom is so lucky to have a caring and concerned daughter.

I would suggest that you visit the JHU pathology website. They have a long discussion of chemo options for recurrent, chemo resistant disease

http://ovariancancer.jhmi.edu/treatm...currentdisease

There is also a pretty supportive message board with discussions on the issue.

Recurrent disease is not fun; but there is always hope and there are several sisters here who are living through recurrent disease.

Dorrie
  #3  
Unread 02-26-2004, 09:32 AM
Questions about my mom's ovarian cancer (sorry but long)

s Rose

Like your Mom, I am a stage IIIC ovarian cancer survivor. Unfortunately this disease does recur too often.
Your Mom still has many, many options out there. Thus far she has used only three of the available chemo drugs.
Seriously, she still has a good chance of a long future with good quality life. You may even want to ask her doctor about clinical trials that are available. It is always best to try a trial drug before too many different chemos have been given. Too many different chemos having been used, can actually exclude you from a trial in the future.
Her pain issue is of major importance. No one should be living with pain. Your really need to address this with her medical oncologist. I don't believe this issue should even wait until March 10th.
The Hopkins site that Dorrie linked you with is excellent. THere is even a huge article there about recurrences by Dr Deborah Armstrong that I highly recommend you read.
As the daughter of an ovarian cancer patient are you aware of what you should be doing to best protect yourself?
Taking birth control pills for at least five years is one of the most important things you can do. Requesting that your ob/gyn perform a recto-vaginal exam during your annual checkup is also important. This is the method used to best palpate ovaries. ANd not enough ob/gyns are doing this. You should also be followed with an annual transvaginal ultrasound along with a ca 125.
Hope I am not giving you too much info.
Stay in touch.

karenann
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  #4  
Unread 02-26-2004, 11:17 AM
Questions about my mom's ovarian cancer (sorry but long)

Dear Rose,

You are such a sweet daughter to want to help your mother. I'm so sorry that you are both going through this. I think DorrieL and Karenann both provided you with some wonderful information, and I hope the Hopkins site is helpful to you.

I am working with a nutritionist who only works with cancer patients. She has been quite successful in helping people manage their disease with dietary modification. I do not necessarily know if this will help in your mother's case, but it may be worth a try. There is also some free info -- e.g., foods to eat vs. foods not to eat if you have cancer -- on her web site, which is at www.nutritional-solutions.net. If you click on "Lectures & Events," you will find a "dietary recommendations" document at the bottom of the page. Printing it out and adhering to its advice might be helpful to you.

I find that the more I am able to exercise -- even just walking -- the better I feel. I sometimes don't have time, but I always feel better when I take a 40-minute walk. If your mom is not in too much pain, perhaps she could try some walks in the neighborhood. Even a short walk is better than no walk.

I am a strong believer that combining convential medicine with alternative therapies provides the most well-rounded treatment plan. I guess I just want to cover as many bases as I can. I adhere to certain dietary restrictions as best I can, but I have chocolate breakdowns every other day or so. ;-) I have, however, cut out all alcohol, dairy products, processed food, meat with hormones, shellfish, most breads and most refined sugars. It is recommended that I eat 7-9 servings of vegetables a day; some days, I accomplish this easily, while other days I don't get enough vegetables at all. Still, it's helpful to have a goal. A big glass of fresh-squeezed vegetable juice (not store-bought) can provide 4-5 servings very easily. Couple that with a big salad (no head lettuce!) and you can easily get the right amount of veggies into your diet.

When you next meet with the doctor, you should inquire about different drugs and how they might or might not help in your mom's situation. It seems that your mother has become platinum-chemo resistant, which my doctor has always told makes things really difficult. I wish I knew what to suggest. You can look up clinical trials in your area on the www.cancer.gov web site. Your hospital may be involved in one clinical trial, but other nearby hospitals may be involved in others. So it's good to research your options, since your hospital may only tell you about the trial that they are involved with. Whether or not to participate in a clinical trial is certainly something you should discuss with your doctor and with any doctors leading a study at another facility.

Please let us know what the doctor says. I wish you both the best of luck and hope that some of the advice here (and posted earlier) can be of value to you.

Many s!
  #5  
Unread 02-26-2004, 03:02 PM
Questions about my mom's ovarian cancer (sorry but long)

Hi
Dorrie &Karenann gave you good advice. There are many chemo drugs to try. Do not give up. 's to both of you.
Ruth S
  #6  
Unread 02-27-2004, 06:11 AM
Questions about my mom's ovarian cancer (sorry but long)

Thank you all so much for the encouraging words and for all of the information.......I am trying to absorb it all.
To Karenann, I had a TAH/BSO in August of 2000, was suspected of having ovarian cancer had an elevated CA 125, turned out to be stage 4 endo, and lots of ovarian cysts.....so I am so glad my ovaries are gone, probably would have had trouble down the road.
After I read all of this information, if I have any more questions, I'll be back.........thank you all so much.
Hugs and prayers to all of you fighting this terrible disease.

Rose
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