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Hi, I am a new member

MJensen
Posts: 93
Joined: Oct 2012

Hi
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!!!

kimberly sue 63's picture
kimberly sue 63
Posts: 396
Joined: Apr 2012

Welcome to the board. OVCA is hard to manage and some have harder journey's than others. It can't be easy to then have a vertebra fracture!! Hang in there. Keep up the chemo to keep the disease in check and know there are new treatments being approved soon. Something will finally get your disease under control. Kim

MJensen
Posts: 93
Joined: Oct 2012

Thank you....but I am not so tough. I have very rough times like everyone else but just have been afraid to say it out loud I guess. Every time I think this is it and I dodge a bullet this thng raises its ugly head. I am scared, angry and petrified but it felt good to get it off my chest finally to someone that can relate. Usually I only go through this with my Oncologist and I know he is doing everything he can for me. My husband goes to all the appointments but usually hears something a little different. I guess it is a little denial. He isn't the nurturing type so I end up trying to do what I can to forge through each hurdle. My kids and family have always seen me as the strong one always in control of the situation. It is tough to lose that control when fighting cancer. I manage 45 mfg employees. They always see me strong and in control but I assure you I am not lately. I am the type to never want to let anyone down....but I feel like I am at my breaking point right now. All of the inspirational stories I read here have helped me immensely. I think I have been silent way too long.
Sunshine and positive thoughts to everyone suffering through this dreadful disease (all types) as a patient, caregiver, family or friend!

DianaCEO
Posts: 9
Joined: Oct 2012

I am so sorry for your difficult road and I will pray diligently for you. I recommend the book Healed of Cancer by Dodie Osteen, mother of Joel Osteen to lift yourself up. I readit daily. Is there any other treatment they can give you except chemo? Can you get in a trial for any treatment?

I know in Germany they give Dendritic cells, and boost the immune system. Has anyone tried this?

MJensen
Posts: 93
Joined: Oct 2012

Thank you ....I will look for that book. Please let me know about the Dendritic cells. I have been considering going to see John of God in South America. Curious if anyone knows of any success stories with this healer.

DianaCEO
Posts: 9
Joined: Oct 2012

I am so sorry for your difficult road and I will pray diligently for you. I recommend the book Healed of Cancer by Dodie Osteen, mother of Joel Osteen to lift yourself up. I readit daily. Is there any other treatment they can give you except chemo? Can you get in a trial for any treatment?

I know in Germany they give Dendritic cells, and boost the immune system. Has anyone tried this?

Mwee's picture
Mwee
Posts: 1316
Joined: Nov 2009

I'm so very sorry that you've been going through so much. I am glad that you found your way to this site. I've also been chemoing for the past 2 3/4 years and know what a grind it can be. Best of luck with the Topotecan ( that drug will be the next on my hit parade ).
We're right here for you.
(((HUGS))) Maria

Cafewoman53's picture
Cafewoman53
Posts: 734
Joined: Jul 2010

I can't imagine working while going thru everything you are. I just had a spinal fusion and knock on wood my cancer has given me a little break so I didn't have to deal with both at the same time. Sorry you had to join us but you can always find good information here or at least some great support.
Colleen

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