coopcrew's Journey with Epithelial Ovarian Carcinoma

Patient: Ovarian and Fallopian Tube Cancer > Epithelial Ovarian Carcinoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: almost 7 years ago, Female, Age: 58, Stage Recurrent

  1. 1
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Diagnosed

    Oh No

    January 12, 2011- After a month of severe indigestion, some fatigue, and occasional fevers, severe bloating made me feel 9 months pregnant and easily winded so I finally went in to the emergency room. A CT scan revealed the ovarian cancer. Time to find a gynecologic oncologist.

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  2. 2
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Removal of fluid from abdomen (paracentesis)

    Procedure or Surgery

    January 19, 2011- Drained off 3 liters of abdominal fluid and lost 20 lbs. What a relief!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  3. 3
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was too sick to do surgery first, so started chemo on Feb. 1, 2011. Carboplatin and Taxol. I was originally scheduled to do 3 rounds, then surgery, then 3 more rounds. However, I was hospitalized for 6 days after the second round because I developed DVT's in both legs and PE's in both lungs. I stayed on my chemo schedule, but ended up doing 5 rounds before surgery, with 3 more after surgery.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Surgery

    Procedure or Surgery

    June 17, 2011- Finally, surgery! I had a bilateral salpingo-oophorectomy, total hysterectomy, omentectomy, and debulking. My surgeon was highly satisfied with the results feeling that I could be cured. I had difficulty with anemia the day after surgery, but a 2 units of blood in a transfusion fixed that.

    Went as Expected: Strongly Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    July 12, 2011- Time to start 3 more rounds of chemo with carboplatin and taxol. Finished up on Aug. 25, 2011, just in time for in-service meetings the following week to begin teaching for another school year.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  6. 6
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Remission

    Celebration

    Celebrated in Sept. 2011 the end of chemo and start of remission. My 3-month check-up in Oct found my CA 125 count down to 6.8! Woohoo!

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  7. 7
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    observation arm to monitor monthly CA 125 levels

    Clinical Trial

    October 12, 2011-Decided to try a clinical trial seeking to find out OS rates for maintenance chemo. Study has three arms: one arm gets carboplatin/taxol once a month for a year, a second arm gets an experimental chemo drug once a month for a year (this drug takes 10 minutes to infuse, but no nausea or hair loss), and the third arm gets physical exam and blood draws to monitor CA 125 levels once a month for one year. I ended up in the third arm, the observation group. I made it through 9 out of 12 visits. At my ninth visit (June, 2012), my CA 125 was 31 (which is still normal <35) so I got a CT scan, but there was no evidence of disease. At my tenth visit, (July, 2012) my CA 125 was 122 so I was dropped from the study.

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  8. 8
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    Cancer is back/Recurred

    Oh No

    With CA 125 still going up, another CT scan, blood draw, and consult with gynecologic oncologist was scheduled for Aug. 1, 2012. CA 125 was up to 243, but still no evidence of disease except for one enlarged lymph node in the pelvis and one minute spot on the diaphragm. So now I wait until symptoms occur.

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  9. 9
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    what to do about rising CA 125 level

    Decision Point

    Aug. 1, 2012- Decided to wait to treat until symptoms develop or until after another CT scan and dr. exam in 3 months.

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  10. 10
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    about 5 years ago
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    rountine blood work

    Other Care

    I had a lipid panel and a thyroid TSH for the first time, along with a CBC done recently (8-10-12). Although I have put on weight (10 lbs) in the last 3 months, I found my overall cholesterol and my LDL (bad cholesterol) were in normal ranges, but my triglycerides were high and my HDL (good cholesterol) was a little low. :( I was disappointed. Then I was surprised that my dr. wanted to medicate first, rather than try lifestyle changes. I try to eat healthy and I swim and exercise at least 60-90 minutes 6 days a week! I declined the prescription meds. My CBC was good in every category. But my TSH was 3.5 which is the high end of normal on some reference ranges so my dr. didn't even make note of it. But I saw online that some endocrinologists suggest checking any result above 3.0. So now I wonder if I have a thyroid problem which is making it difficult to control my weight. I also wonder if my cancer recurrence is the cause or if my thyroid was affected by my chemo. I plan on making an appt with an endocrinologist soon to help figure things out.

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  11. 11
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Cancer is back/Recurred

    Oh No

    10-26-12 I am starting to feel symptoms, a pain in the left rib area like a stomach ache.

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  12. 12
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Time to treat recurrence

    Decision Point

    11-14-12 CT scheduled and visit w/ gyn-oncologist. Cancer is showing up along w/ bloating and CA 125 up to 1619. Dr. recommends starting chemo w/ carboplatin and doxil next week.

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  13. 13
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Removal of fluid from abdomen (paracentesis)

    Procedure or Surgery

    11-14-12 Drained 2.4 liters of fluid. I feel some relief.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  14. 14
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Nausea/Vomiting

    Side Effects

    11-22-12 Starting to feel sick from the chemo. This was expected.

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  15. 15
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    11-20-12 I started chemo today w/ carboplatin & doxil. Infusion only took 3 hours and I didn't sleep through it all like I did with carboplatin & taxol.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  16. 16
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Fluid in the abdomen (ascites)

    Side Effects

    11-23-12 Feeling VERY uncomfortable with bloating. Even went to the ER to get a paracentesis, but they wouldn't do it.

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  17. 17
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Removal of fluid from abdomen (paracentesis)

    Procedure or Surgery

    11-30-12 This was originally scheduled for 12-3-12, but I got my dr. to move it up since I was so uncomfortable. This time 3.5 liters were drained.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  18. 18
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Hospitalization

    Other Care

    12-01-12 Started feeling very week and nauseated. I called the oncology on-call number, but the oncologist sent me to the nearest emergency room. I was running a fever and bloating again. I had another paracentesis which only drained O.5 liter and then went by ambulance to the hospital an hour away to spend the next 4 days. An infection of the abdominal fluid was suspected so I was put on an antibiotic. I also had a CT scan on 12-02-12 and another paracentesis (No. 4). This one drained 2.2 liters. I went home on 12-05-12, but felt I was starting to bloat again already.

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  19. 19
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Removal of fluid from abdomen (paracentesis)

    Procedure or Surgery

    12-12-12 Took the day off work to be drained again (No. 5!) This time only 1.2 liters were drained. But this time I feel some relief. I tried to get in to start chemo again, but the schedule at the clinic didn't work out.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  20. 20
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    change of treatment

    Decision Point

    12-11-12 met with my oncologist again today b/c I continue to bloat. He feels that the carboplatin/doxil combo is not working as my CA 125 went up from 1250 last month to 1620 now. Also, I continue to bloat and have abdominal pain. He set up another paracentesis for the next day and will change treatment to carboplatin/taxol. I agreed b/c bloating is painful while hair loss is not.

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  21. 21
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    12-18-12 Round 2 of second treatment for recurrence. This time with carboplatin and taxol. The nurse had trouble inserting the IV, took them 6 tries. Now I am considering getting a port. Infusion took almost 6 hours. I hope it works.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  22. 22
    • coopcrew
    • Experience with Epithelial Ovarian Ca...
    almost 5 years ago
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    Removal of fluid from abdomen (paracentesis)

    Procedure or Surgery

    1-18-13 Started feeling bloated again at the beginning of the week so I emailed my oncologist who set up another paracentesis for Friday. This was my 6th one and it drained 2.5 liters and helped me lose 10 lbs overnight. I feel much better again. How many more will I need?

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    1 Comment