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    wendyp1000 asked a questionEndometrial (Uterine) Cancer

    Topotecan - Side effects

    • carm's Avatar
      carm

      Hello, I am an oncology nurse. It sounds like you have Topotecan induced sweet's syndrome. Sweet's syndrome is characterized by fever, neutrophilia, and painful erythematous cutaneous nodules. These nodules tend to occur on mucosal linings like the mouth, and include the vaginal vault as well. I used to work gynecological cancers and I have seen this with Topotecan before because it is a harsh therapy. Systemic corticsteroids are the gold standard treatment. Best of luck to you.

      about 3 years ago
    • wendyp1000's Avatar
      wendyp1000

      Thank you so much for answering - you know, your mind goes hog wild and everything medical that happens to you seems to be cancer. I appreciate your response.

      about 3 years ago
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    wendyp1000 shared an experience

    Drug or Chemo Therapy (Chemotherapy): Gyn Onc wants to do a round of Topotecan - never heard of it. Waiting for approval from my insurance company or for the doc to come up with plan B.
    Update: began Topotecan in January 2019 - the actual physical side effects are infinitely better than the carbo/taxol from 2018. Less nausea, did not loss hair (thinning), way less achy joints. I just feel so very tired all the time.
    * however, it has really hit my platelet numbers hard.
    Hoping it does the job...

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    wendyp1000 shared an experience

    Drug or Chemo Therapy (Hormone therapy): I am currently taking Megace (Megestrol) and Arimidex. I forget which is the anti-testosterone and which one is the anti-estrogen. While it didn't seem to help stave off the growth of uterine cancer tumors, it seems to have stabilized my breast cancer growth. My breast tumor has not changed in size and was much less lit up on my latest scan. I'll take it!

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    wendyp1000 asked a questionEndometrial (Uterine) Cancer

    Topotecan - has anyone been through this chemo?

    6 answers
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      wendy1000, I have not been on Topotecan but another survivor has been on it, kalindria. Search for her name under the people tab. She is an ovarian cancer survivor and frequently posts on WhatNext.

      over 3 years ago
    • kalindria's Avatar
      kalindria

      Hey there, Wendy1000. This is Lynne's friend, kalindria. I took Topotecan along with Avastin as maintenance chemo after a recurrence of my fallopian tube cancer. Some weeks I got both drugs, some weeks I got just the Avastin. It's easier to manage than Carboplatin & Taxol PLUS I got to keep my hair! My tumors have been small (following a second debulking surgery) and stable. In fact I stopped chemo in October to clear out my system prior to a knee replacement surgery. My tumors are still small and stable. My oncologist and I agreed that doing a CA125 now wouldn't change the course of my treatment but we'll check it and discuss options after I rehab my knee a bit. When that happens, it will probably be Topotecan and Avastin or just Avastin.

      I had no problems with either of these chemo drugs. The side effects were mild nausea and tiredness - the usual. Nothing too horrific.

      over 3 years ago
    • carm's Avatar
      carm

      @wendyp1000,
      Hello, I am an oncology nurse and I specialize in gynecological cancers so I have seen Topotecan used before although as stated above, more so with ovarian cancer... It is not considered a line of therapy for uterine. That being said, if the insurance will not cover your therapy, get the drug from the pharmaceutical company and bypass the insurance by using the "right to try" law or the compassionate drug use option. I just did this last week for a patient who could not get Keytruda approved so Merck will give the drug. All her MD had to do was fill out the application and attach the insurance rejection letter and submit to the pharm house. Best of luck to you.

      over 3 years ago