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.
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.
Diane
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?
Lynn
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