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My Story of Uterine...
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My Story of Uterine Carcinosarcoma

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I was diagnosed with stage 4 Uterine carcinosarcoma in August 2016 after undergoing a radical hysterectomy and removal of twenty some odd lymph nodes and omentum. I started 6 sessions of Carbo-taxol spaced 3 weeks apart 3 weeks after surgery. I responded well and finished chemotherapy 1/10/17. I have had no evidence of disease for the past 13 months and aside from some chemo induced neuropathy in my feet and a rather large annoying lymphocele resulting from surgery, I feel well.

My case was complicated by the fact that Six months prior to the cancer diagnosis I was diagnosed with an autoimmune disease which requires treatment with an immune suppressant. Although my doctors are treating these as two isolated events, I have been reading lately that there is a connection between auto immune diseases and cancer. I have an appointment with my gyn/onc as well as my hepatologist next month and will be discussing this with them further.

As a side note, I feel it is so important to have doctors you trust and connect with. I had to change several times before I found my current doctors. I am currently under the care of Dr. Joshua Cohen gyn/onc at UCLA and so far have been pleased with his care.

I exercise and meditate regular, eat a plant based gluten free diet, and am monitored frequently. Since my diagnosis I have found I have a deeper connection with family and friends and put a higher value on spending time with them. I have become much less task oriented and try to appreciate family and friends while I feel good.

I know I am at high risk for recurrence and although it is often difficult, I try not to let the anxiety this causes rob me of enjoying my life.

And finally, I am so thankful to Diane for creating this website and forum for those of us dealing with this disease to share our experiences and knowledge.

Posted : 16/02/2018 8:12 am
Posts: 31
Member Moderator

Hello Lynn,
It is so good to hear from you. You have come a long way since your initial diagnosis and I am very excited and relieved to hear how well you are doing. NED for 13 months after surgery for Stage 4 is remarkable. Are you back on the immunosuppressive meds? I am glad you found an effective treatment team. I could not agree with you more on having a team that you trust and a team that has experience in our cancer.

Thanks for staying in touch. We look forward to hearing more from you.


Posted : 18/02/2018 4:50 am
Posts: 4
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Topic starter

Hi Diane,
I can't thank you enough for starting this website. To answer your question, Yes, I am back on an immune suppressant for my liver. I have opted for Budesonide, a cortico steroid, rather than the Azathiaprine I was on prior to being diagnosed. From what I read, the Azathioprine targets T-lymphocytes and since it is the T-lymphocytes that fight cancer, I am hesitant to be on that drug.
Have you been able to start the trial you were being considered for?

Posted : 09/03/2018 2:40 pm

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