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Hi, I am a new member

Posts: 93
Joined: Oct 2012

I am a new member that has been following some of your stories for a short time trying to get the nerve to register. I have been dealing with OC for some time now and been on a roller coaster of emotions ever since. I think I finally decided to join in because it is hard to talk with friends and family that really can’t relate to what we go through.
I was diagnosed in Aug 2010 with Stage 4 Ovarian Cancer. Prognosis was 70% chance of short term recovery and 20% chance of long term remission. Had been seeing several Dr’s over the year prior and all had diagnosed me with chronic IBS. CA 125 was over 4000 at time. GYN Oncologist did laparoscopic surgery after diagnosis. Was only able to remove the ovary and fallopian tube because the cancer was wide spread. He sewed me up and we started chemo the next day. Taxol and Carboplatin. Had 3 treatments of chemo (every 3 weeks) and spent time in and out of the hospital having transfusions, plasma, shots etc to boost my bone marrow. After the 3rd treatment the surgeon went in for a “second look” and debulking surgery. He said it looked like “night and day” on the inside. He did a complete hysterectomy. Resumed chemo a week after surgery for 3 more treatments. Finished Dec 9 2010, had a CT scan and all the Dr’s said I was in remission – CA125 was 9. Very happy occasion.
Feb 2011 (2 mo later) went for a annual check up with my regular Dr and he noticed the CA 125 was on the rise -140. Went back to the Oncologist and he ordered a CT scan. Was diagnosed with diverticulitis. Went on antibiotics. CA 125 continued to rise. They ruled out diverticulitis and decided it was the disease that just “looks like” diverticulitis.
My disease is hard to see on a scan because it is what they call “seeding” or “frosting” and since it isn’t a measurable mass it barely (if at all) shows up on the scans. Our only recourse is to watch and see what the CA 125 marker is doing although this isn’t the most accurate way to observe progression.
Went on Cistplatin and Gemsar. It knocked it down and I got my CA 125 back to 20. Finished the last cycle and the CA 125 started to rise again. Dr then tried Avastin and an oral chemo pill but no luck with this.
Started a new treatment using Doxil. It showed some promise and the CA 125 started going down again. The disease apparently got “smart” with the Doxil and the CA 125 started to rise so I had to stop this course of treatment. Recently started Topotecan about a month ago. It did a number on my bone marrow and I was only able to get one treatment. Platelets were too low to proceed. In the meantime I had a little accident (fell) and broke my L3 vertebra. Could barely walk and had to sleep in a recliner. On top of this I started getting very nauseas and sick. Extreme cramping and vomiting. Went on a low residue diet but to no avail. Still very gassy and lots of cramping.
Had surgery 2 weeks ago to repair my L-3 vertebrae. Kytoplasty – they insert cement into the vertebrae to give my back an internal cast. Day after surgery my back felt a lot better. What pain was still there was manageable. A week later the pain in my back has come back. Dr thinks I could have a herniated disc as well Very painful and still cramping and vomiting.
Will need an MRI to check out the Lower Back issue. Had a CT scan Friday to see if I had blockage in the large intestine which may be causing the cramping and vomiting. Dr called me today (Sunday) no blockage and now the Radiologist says it looks like I have colitis. Oncologist said more likely it is the disease infiltrating the large intestines now and has spoken to my GI DR to see if I should have another colonoscopy and possible bowel resection. Resumed the Topotekan this week at a lower dose. Will have blood work weekly to check bone marrow and chemo every Wed if blood work is OK. CA125 is currently at 1585.
Trying to be patient to see if the Topotecan will knock this down again but hard at times to maintain a positive outlook after being on chemo for 2 years and now dealing with intense cramping, vomiting and back pain. Have been working most of the time through all of this but went to 4 hrs a day when I hurt my back. Now I feel like I may have to go on disability which will be upsetting to me as it has been a good distraction for me. Would love to think Topotecan will be the miracle I have been waiting for!! Sorry for the rambling but I figured I would want to get you up to speed. This disease really sucks for the patient and our family and friends. My heart goes out to all of you!!

Wishing everyone sunshine and positive results!!!

lovesanimals's picture
Posts: 1364
Joined: Sep 2011

Please don't feel bad about the "rambling". I am so glad you joined the board and are sharing your story with us. You've been through so much; I admire your courage and strength. I too hope and pray that the Topotecan kicks your cancer's butt and you find relief from the cramping, vomiting and pain. You're right - it's extremely difficult to have a positive outlook and to even think straight when you have pain and are suffering. Sending you lots of good thoughts and prayers that things start improving for you really soon!

Take care,


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