Confused about my options with Carcinosarcoma

trishmattjon said:

I was just diagnosed after a laparoscopic hysterectomy...
On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

Viking45 said:

Uterine Carcinosarcoma
Annie,
I hope you are still with us. My wife was diagnosed with MMMT stage 4 at the beginning of this year. She underwent three rounds of ifosfomide/taxol and the tumors doubled in size during those two months. She now is on a targeted drug called Cabozantinib. It is a clinical trial that acts like it's doing something. We won't know for sure until she gets a CT scan in late July. He CA 125 dropped to 21, her bleeding stopped and her abdomen discontinued filling with fluid. It all feels very hopeful. We are extremely interested in hearing what others have done that produced positive results. We are not interested in radiation if it can be avoided. We are hoping that MATCH or sequencing might be an option down the line. I pray you have found a way to remiss this beast.

Hi Viking45, I underwent the same frontline chemo regimen (after surgery) as your wife but also had 28 external radiation treatments sandwiched between the 3rd and 4th chemo rounds. I finished frontline in May and the results of my first scan in June indicated NED. My gyn-onc had sent the tumor slides to Helomics to be tested with different chemos before beginning treatment. The ifosfamide/taxol combo was the most effective of all the ones tested. I hope this information is helpful.

So glad to hear that the Cagozantinib is working for her. Please keep us updated on how she is doing. Wishing you both strength and peace, Kim

Countrygirl64 said:

How are you now?

How are you now?

Hannah1's profile indicates that she hasn't been online since 2015. According to her profile, she was diagnosed with several other cancers after uterine cancer, but we don't know her status now.