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My story of Carcinosarcoma 2018

GCS Project Home Forum Share Your Story My story of Carcinosarcoma 2018

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    • #4902
      ELLEN RUDEN
      Participant

      This is my timeline of events:

      • 12/04/2017 – at my routine ob-gyn apt, I complained about dull nagging pain in right lower abdomen. My obgyn ordered pelvic ultrasound and blood test
      • 12/12/2017 – ultrasound showed ovarian mass + uterine fibroid. Blood test showed CA-125 equal 41 (normal range 0 – 35)
      • 1/8/18 – full hysterectomy was done at Holy Cross Hospital, MD, by oncological surgeon Dr. Al Steren who assumed everything was benign
      • 1/16/18 – Dr. Steren called with pathology/cytology results that showed Carcinosarcoma (MMMT) in right ovary, left fallopian tube, and uterus. Pelvic washings also showed malignant cells. The stage was given as 2a/2c
      • 1/23/18 – consultation in Maryland with oncologist Dr. Conrad-Rizzo
      • 1/25/18 – consultation for second opinion at Sloan Kettering in NYC with oncologist Dr. Martee Hensley. The stage per their pathologist was 3a. Both oncologists agreed on 6 rounds on chemotherapy with Carboplatin + Paclitaxel every 3 weeks with checkpoint after 3 rounds chemo to determine if it’s working or not.
      • 1/26/18 – CT and PET scan showed very bright node in the center of my liver. Much weaker activity showed in pelvic area, most likely because there was still healing from hysterectomy. The stage was given as 4a
      • 2/1/18 – first round of chemo with Dr. Conrad-Rizzo: Carboplatin + Paclitaxel. Also, iron infusion was added due to my anemia.
      • 2/6/18 – Consultation with oncology surgeon Dr. Edward James Tanner III at Johns Hopkins for possible liver surgery. His opinion was that the liver metastasis was centrally located, no surgery would be possible. Also, his opinion was stage 4b.
      • 2/8/18 – second iron infusion
      • 2/22/18 – will be second chemo treatment

      Chemo is our Plan A but given the course of events, I am looking for other options to have a Plan B and Plan C in case current chemo is not working. My family was horrified after each twist and turn of my diagnosis; I am trying to avoid another shock for them. Any additional information would be very much appreciated.

    • #4910
      Steven Dorf
      Participant

      Was it difficult to get an appointment with Dr. Martee Hensley? She told me she wasn t accepting any new patients (I met her personally at the hospital), meanwhile my mom is in MSK and Dr Hensley met my mom and knows she has stage 4c carcinosarcoma. Was just curious?

    • #4917
      ELLEN RUDEN
      Participant

      Good morning Steven, yes, we were told Dr. Hensley was a restricted access specialist.
      It was just one-time consultation for second opinion granted to me or rather my oncologist on a short notice, I believe due to someone’s cancellation.
      Unfortunately, I did not get full benefit of the consultation because it was one day before CT/PET scan that found the extent of metastatic activity in my body…

      Hope you Mom feels better.

    • #4942
      Heather Jernstad
      Participant

      Hello Ellen,

      Have you had genetic or genomic testing done? This may yield + mutations that would provide guidance to alternative therapies should you need them. Also, try not to focus on the stage…focus on survival. I know it’s not easy, but I’m 45 and have a 10 year old and need to believe that I will be here to see him through high school and college!

      Heather

    • #4943
      Heather Jernstad
      Participant

      Also, look to see about liver-directed therapy…this is where a catheter is threaded into the liver and chemo is delivered right at the site and not systemic. Interventional Radiologists typically administer the therapy in my area in conjunction with the care of a Medical Oncologist (Chicagoland).

    • #4968
      ELLEN RUDEN
      Participant

      Thank you Heather for your response, I admire your positive attitude more than you can imagine!!!
      I am sure it plays huge role in our fight against this mysterious type of cancer.

      Yes, Dr. Conrad-Rizzo sent my blood and pathology tissue samples for genetic testing; the results did not come back yet.
      Also, yesterday at my chemo appointment, she referred me to a geneticist at Sibley Hospital in Washington DC.

      Also, just in case, there are two genetic tests approved by FDA in 2017:

      FDA approved of MSK-IMPACT™. The test was developed by Memorial Sloan Kettering’s Department of Pathology to look for genetic mutations and other alterations in patients’ tumors.
      MSK-IMPACT, which stands for integrated mutation profiling of actionable cancer targets, has been used to analyze the tumors of people with advanced cancer being treated at MSK since January 2014. It is based on a technology called high-throughput next-generation sequencing. This means the most critical parts of the cancer genome — the complete string of DNA “letters” in a cell — can be profiled very quickly and with great sensitivity. When the test was first developed, it looked for alterations in 341 cancer-associated genes. Today, it looks for alterations in 468 genes. These alterations may be seen in both common and rare cancers.

      Abnormal DNA mismatch test:
      https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm

    • #4976
      Heather Jernstad
      Participant

      We have to remain positive; therapies are continuing to evolve and we need to be passionate about finding what it takes so that we can be on here to congratulate one one another years to come!

      I cannot tell you all how grateful I am for this forum…information sharing and determination to make this part of our medical HISTORY!!

      There was an oral therapy approved today for pts that did not need to test positive in any genetic test and is given for ovarian…maybe a possibility for us (the name is escaping me at the moment…chemo brain…lol)

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