Jade's Journey:
- 1 Side Effects Icon Side Effects
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 4 Side Effects Icon Side Effects
- 5 Oh No Icon Oh No
- 6 Clinical Trial Icon Clinical Trial
- 7 Procedure or Surgery Icon Procedure or Surgery
- 8 Decision Point Icon Decision Point
- 9 Loss Icon Loss
Patient: Ovarian and Fallopian Tube Cancer > Epithelial Ovarian Carcinoma
Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 10 years ago, Female, Age: 77, Stage IV
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Fluid in the abdomen (ascites)
Side Effects
first indication that something was amiss.
Hysterectomy
Procedure or Surgery
Hysterectomy became complex with bowel resectioning and removal of omentum/debulking... have to take cholestyramine for the rest of my life to compensate for bowel resectioning and prevent constant stream of diarrhea. I also frequently need a binder to help support abdomen and reduce incidence of pain... riding in a car has become the most painful thing I suffer on a regular basis ( just getting to treatments... my daughter drives me the hour plus each way and I am getting better as the CA125 comes down). Driving (now that it is possible) is better as the support of the steering wheel helps divert the shock to the abdomen.
Chemotherapy
Drug or Chemo Therapy
20 days in hospitals and 6 weeks in rehab center while getting chemo and TPN with negative reaction to opiates....
Anemia (low red blood cell counts)
Side Effects
Hair loss and low potassium as well as extreme swelling in legs (reduced as chemo progressed)
Cancer is back/Recurred
Oh No
got CA125 down to 34.6 and was taken off chemo on April 24th, CA 125 shot up to 37, then 60 and then 600. Pain increased in abdomen and chest (fluid around lungs)
Am currently in double blind clinical trial with paclitaxil and possibly pazopanib
Clinical Trial
projectile vomiting in three sessions after taxol injection on Thursday... all night and into Friday... missed tablets on Friday and called Dr for advice... I was admitted to hospital for several days... seems the cholestyramine I have to take after the bowel resectioning caused a blockage that finally dissolved. I started taking the cholestyramine in smaller doses throughout the day for awhile (rather than the full scoop am and pm). I have been okay since then (mid-August). The fluid in my right lung has been a constant problem though with shortening my breath and causing my heart to struggle just climbing the stairs or carrying anything... too little for thoracentesis again (had that in July because fluid pressure was pushing my heart into my left lung and pain was unbearable). A bit of a recap: I have been diagnosed with stage 4B epithelial ovarian cancer and am interested in finding people who have survived beyond the two year mark that the ACS projects for only 18%. The types of chemo are important to me as the platinum/taxol combination that I was treated with following surgery was great for the CA125 numbers but caused me to have many lapses in treatments due to anemia, blood transfusions, and other less than desirable side effects. Unfortunately I went home to a rural area and continued the chemo regimen without benefit of an informed/experienced oncologist and was kind of left in limbo after the count got down to 34... the cancer resurged and the count went from 60 to 600 in 4 weeks. I immediately came back to my original surgeon in Albany and entered a clinical trial (of which I am in the third cycle). The CA125 numbers are coming down slowly and my last was 343. This has been as close to XXX as I choose to get. I am allergic to all opiates and therefore pain is a depressant at times that curbs my will to live at all... some days are pretty good though and those and the prayers of friends and family carry me forward.
Procedure or Surgery
This person has yet to add any details about this experience.
To try third chemo or give up
Decision Point
The clinical trial was a bust, CA125 shot up to over 2000 after 4 cycles and now I think it is time to call it quits. The chance of a third round of chemo having any effect is only 10% and the discomfort it would bring is too much for me... I am tired and having so much difficulty just breathing, it hardly seems worth getting up anymore. I have home oxygen and a hospital bed to help me sleep but it hurts to cough or even breathe deeply. I have no energy and not much appetite. I am supposed to get permanent drains put in my abdomen and chest tomorrow so that I do not have to have the ascites drained at the hospital every week. There just seems little else to do but close the book; the story is almost over.
Loss
This person has yet to add any details about this experience.