Mom Newly Diagnosed -- Next Steps?

[LolaJane]

My mom is 54 years old, and has just been diagnosed with carcinosarcoma ovarian cancer, what I'm told is a very rare form of the disease. Basically, it was a softball sized tumor on her ovary. She just had it successfully removed this week, along with a total hysterectomy and removal of lymph nodes and appendix. She is classified at Stage 3A. The surgeon said that they were able to successfully take out the entire tumor, there was no presence of cancer cells in her lymph nodes (good news!) and only one small biopsy in her abdomen showed a small amount of cancer cells. She will start chemo in a few weeks. He said we could be optimistic at this point.

I want to learn as much as I can about this, so I can help her stay informed during treatment. For those of you who have or are currently battling this disease, what kind of advice would you pass along to someone newly diagnosed? Anything you didn't do early on that you wish you had done? Any tips for chemo?

Best wishes to you all. The more I learn about this disease, the more I see that we really need to find a cure, or at least a better way to diagnose it early!

[stephers]

Hi I also have Carcinosarcoma of the ovary. I am 27 years old and was diagnosed last March. I am stage 4. I have had two surgeries 9 rounds of Taxol/carbo, 3 rounds of Caelyx, unfortunatly it keeps coming back. Now the Dr. is going to put me on Ifosfimide and Cisplatin which is more of a sarcoma treatment then one for ovarian cancer. If you are doing research on this cancer be warned, the stats are horrible, however in my opinion there are not enough cases to use stats for predicting your outcome. And it depends where you read. Also this cancer is called MMMT of the ovary, it more commonly occurs in the uterus. There is  a support group on yahoo for Uterine MMMT and includes carcinosarcoma of the ovary. Just a heads up I feel great and other then going through chemo I have had a relativly good year. I had genetic testing done for my sisters and mother and it came back negetive.
I will pray for your mother if you have any questions at all please let me know.

[freshair]

Also drink LOTS of water to keep those kidneys flushed while taking Carboplatin because that drug can affect the kidneys.

[freshair]

It's so great that you are on this site for you moms.

I have had this disease for about 4-1/2 years. My recommendation would be that when your mom finishes chemo that she participate in a monoclonal antibody clinical trial. I wish I had done that. Most of these cancers recur. Some women have had good results with these. Also note if that your mom recurs in the future as most of us do (but hoping so much your mom doesn't) your chances of getting into a clinical trial are so much better. The more chemos you do the less chance you have of being accepted in a clinical trial. There may be a promising one that she may want to try like the monoclonal antibody or an angiogenesis inhibitor. A good website is Cancerconsultants.com which then hooks you up to ecancertrials. When you print out the pages it gives you the class of the trial meaning what type it is such as a vaccine, taxane, interferon, antibody, etc.

My daughter was so amazed that after my chemo I would be up so early vacuuming, cleaning, etc. because of the steroids! As time goes on she'll get a little more fatigued and after the 5th want to quit but she'll get through it. Carbo/Taxol isn't too bad if that is what she is taking.

Best wishes and let us know how she is doing.

[TealSupporter]

Hey Lola Jane!

Check out these articles on carcinomasarcoma ovarian cancer

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=Display&DB=pubmed

Chemo brain is common and it's just what it sounds like.  I would say to stick with your research, ask questions (all), keep a notepad with you so after the doctor is finished you can refer back to all that was said.

Most importantly keep a positive attitude and throw everything at ovarian cancer including the kitchen sink!!!

lots of love,
megan
www.ovariancancerforum.com

[4mom]

My mom was also diagnosed in November- stage IIc and just finished chemo- her prognosis looks pretty good as well.My advice is to just comfort her and give her books to read and inform her of the new upcoming drugs/trials that are out for this beast. Everyone in your family needs to stay positive and she will as well.
there are a lot of websites-
google johns hopkins ovarian cancer and they have survivors stories and other info on ovarian cancer/tealtalk.com is another website...
good luck to you.my prayers are with you and your family