SpunkyS's Journey with Primary Peritoneal Carcinoma (EOPPC)

Patient: Ovarian and Fallopian Tube Cancer > Primary Peritoneal Carcinoma > Primary Peritoneal Carcinoma (EOPPC)

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 6 years ago, Female, Age: 62, Stage IV

  1. 1
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    about 5 years ago
    SpunkyS's Avatar

    Cancer is back/Recurred

    Oh No

    Feeling an increasing shortness of breath. MD did a work up for cardiac diagnosis which was normal. Went to ER because I could walk or talk but not both due to shortness of breath. Pleural effusion and Significant ascites led to ovarian cancer diagnosis.

    0 Comments
  2. 2
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    about 5 years ago
    SpunkyS's Avatar

    Primary tumor debulking

    Procedure or Surgery

    Best surgeon and PA ever. Kind, compassionate and worked to get me scheduled sooner than later. I was the one drgagging my feet. I wanted a "normal" one last Christmas and time to adjust to all that was happening and about to happen. I laugh now because I use to say if I everneeded surgery I wanted to be hit over the head and have surgery done immediately. Instead I scheduled it 3 weeks out, but had it in 2 because of the team's kindness. Zapped my energy. Had 30 lobs of fluid onboard after surgery, my bodies attempt to replace the ascites it had come to love. Oxygen tank as a friend for many weeks after surgery. Now that is a thing of the past.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  3. 3
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    about 5 years ago
    SpunkyS's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    On a drug trial protocol. Standard chemo with the addition of Avastin. Randomized to weekly chemo therapy. My bone marrow was significantly depressed twice which "kicked me off" the trial after 4 cycles. Had many inconveniences: the trots, addicted to soft toilet paper, craving for McDonald's ice cream immediately after chemo, some nose bleeds and fatigue. All in all they were minor inconvenieces. Finished chemo in June, having had to take some weeks off becaue of blood counts. Now receiving Avastin every 3 weeks as adjunctive treatment within the study protocol.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    about 5 years ago
    SpunkyS's Avatar

    Standard chemo with addition of Avastin every 3 weeks.

    Clinical Trial

    Was very afraid of Avastin every 3 weeks based on reading side effects. So far it has not been bad. Cuts heal a little slower than they did before treatment. Every few weeks my joints ache more than usual for several days. There are 2 places where my gums bleed a little after brushing or after eating something crunchy. Soft toothbrush and Biotene help.

    0 Comments
  5. 5
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 5 years ago
    SpunkyS's Avatar

    Bleeding

    Side Effects

    This is just updating my past experience with treatment. Low platelet counts gave me 2 trips to emergency department for nose bleeds. One was just a little leaky experience that started with a sneeze and after an hour did not stop on its own. Of course once I got to Emergency and sat with the nose clip on my nose for 30 min. it stopped. Then was put on observation status and given blood products. The second trip was a full gusher that needed chemical cautery. I was smart enough then to know I could wait for blood products the next day at the cancer center instead of observation status at the hospital. Finally I knew my own warning symptoms enough to call the cancer center and prevent these middle of the night trips.

    0 Comments
  6. 6
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 5 years ago
    SpunkyS's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    My cousin is a massage therapist, specializing in craniosacral release therapy and trained in lymphedema reduction. (see http://upledger.com/content.asp?id=26) She worked on my after surgery and after many chemo sessions. Provided relaxation and fluid reduction. Amazing what the seemingly "hooky" therapy does provide. I also used some aromatherapy for emotional support and for their cancer fighting abilities. Of course all of this was approved ahead of time by my care team.

    0 Comments
  7. 7
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 5 years ago
    SpunkyS's Avatar

    Diarrhea

    Side Effects

    About 1/3 of the way into treatment I would get the need for frequent bathroom breaks, but not true diarrhea for a few days after chemo infusion. Usually happened whenever I ate anything. Later found it helpful to take 1 Immodium and have lots of soft toilet paper.

    0 Comments
  8. 8
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 5 years ago
    SpunkyS's Avatar

    Finished treatment

    Celebration

    Our cancer center has a ceremony when you finish treatment. There is a bell mounted on the wall with a quote that the person says as they toll the bell 3 times. At first I thought it hokey. During my last treatment my eyes were glued to the bell waiting to ring it. Also celebrated my birthday about 2 weeks earlier with a big party. Had about 50 people for pasta bar and birthday cake to celebrate the real gift of life.

    0 Comments
  9. 9
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 5 years ago
    SpunkyS's Avatar

    Thoracenteis (lung tap)

    Procedure or Surgery

    Before surgery and then twice more until chemo took effect I needed to have a thoracentesis (lung tap) to remove the fluid that built up around my lungs. The right side was tapped 6 times, the left just once. It got to the point I could tell them it was time based on how my breathing felt and my fatigue. When I said it was time my MD did not argue or make me go through more testing, just called to order it. Had some really fantastic radiologists. I would request the ones who did it best.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  10. 10
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    over 4 years ago
    SpunkyS's Avatar

    Relay for Life

    Celebration

    Visiting my sister who is a new cancer survivor. Since she usually is in WI in the summer I was looking forward to walking the Survivor Lap with her. She will still be getting chemo in FL then. We walked the survivor lap at the Port Charlotte FL relay for life. One more thing from my bucket list. Happy Dance!

    0 Comments
  11. 11
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    over 4 years ago
    SpunkyS's Avatar

    Clinical Trial

    Had my 12th Avastin infusion since ending chemo last June. My CEA is 15.6! (0-30 normal). At diagnosis my CEA was 1180, after surgery it was 800, at the end of chemo it was 30. Only inconvenient side effects from the Avastin that last for about a week. Life is good. Also stopped a mild diuretic and have had no fluid retention and improved kidney function. :)

    0 Comments
  12. 12
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    almost 4 years ago
    SpunkyS's Avatar

    Anniversary

    Celebration

    2 years ago today I had a "suboptimal debulking " surgery and I am here today to celebrate it.

    0 Comments
  13. 13
    • SpunkyS
    • Experience with Primary Peritoneal Car...
    over 1 year ago
    SpunkyS's Avatar

    Research surveys - 2

    Clinical Trial

    I have participated in 2 research surveys sent out through connections to What Next. Interesting, not too time consuming, and increased my interest in research re: Cancer survivorship and Ovarian Cancer. Go ahead and say "yes" to the survey.

    0 Comments