My Life Was Turned Upside Down

I am 58 years old and was just diagnosed with Stage IV OC. I was always very healthy, never missed work. The any sign of the disease was the swollen abdomen and the felling of being full when eating. These symptoms were clear 2 weeks before diagnosis. I had debulking surgery July 11th which was quite extensive. Removed part of the colon, spleen, scraped diaphram, sliver of stomach and pancreas. Also the omentium was removed. They removed 2 liters of fluid as well. I recovered quite well from surgery, started chemo in 6 weeks thereafter. My chemo is 21 days apart which leaves me nauseated and achy for 7-10 days. I stay as active as possible and remain positive. My CA-125 is 31 after 2 treatments. It was 976 before surgery. I have a great support system. I am so amazed how aggressive the OC had become with very little signs or warning. By the time you have signs of any kind it is usually advanced. You hear very little about OC. I am so thankful to have found this community. I want to spread the word and I am to others about what I know about OC. I have so much more to learn. 😊

23 Replies

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  • Hi! Welcome! I agree with you about being diagnosed when it's advanced. I was diagnosed last December (37 yrs old, BRAC 1 positive). I had same symptoms. They also removed 2 1/2 liters of fluid from my stomach. Starting chemotherapy 4 days later, 6 rounds of carbo/taxol. Complete hysterectomy May 2017. Another 6 rounds of cistplatin ( allergic to carbo), avastin and Gemzar. We are halting treatment because my CA125 is going up and they can't figure out why. I do have a lot of inflammation and hematoma from surgery but my numbers are going up an an alarming rate. I'm going for 2nd opinion next week. Sending you big hugs and know that this is a great board with lots of knowledge and support. Best wishes! Xo

  • Thank you!

  • Hi Peg, am glad you found this community too...the late diagnosis mirrors the story of many of us. Where are you based? love C x

  • I live in Ohio

  • I take one day at a time. I am so encouraged by others stories. I think of myself only being healed as I go through treatment. I try not to look at statistics but think positively. It helps me to get through it all. The statistics are important in educating others and for the awareness of the disease. Thank you for your welcoming! 😊 love P

  • Hi Peg,I'm glad you found the site you will indeed find lovely ladies to help you a long the way. I had the same symptoms as you when I was diagnosed my 125 was 2700 I had never been sick and worked right up to when I was diagnosed, I'm in my 3rd year now.

    For the last 2 years I have had some good advice and encouragement and corresponded with some amazing ladies, I hope you find that is the same for you...take care Lorraine xx

  • Hi...yes I was similar too, very fit and well, and also went to work day before surgery! It's hard to comprehend at the time the illness can be so advanced when the symptoms are so subtle. Glad you have a good support network and I'm sure you'll find this site really supportive and helpful. Jo xx

  • Hi Peg, yes, it turns your life up side down & you end up on your butt. Slowly but surely you will start to get back on your feet. It doesn't happen over night & at times it will feel as if you will never get there but you will. The lovely community on here can answer most of your concerns or just be here to support you through your journey.

    As for your ca 125 that is excellent after only 2 treatments. Also having a good support team is the way forward at fighting this cancer. Please keep us up dated on your progress. Take care Cindyxx

  • My story is so similar to yours. Very fit and healthy and only symptom was mild nausea until difficulty eating led to diagnosis. I had absolutely no idea that I was seriousy ill.

  • Hi and welcome to our gang, you’re more welcome than you know, we’re a friendly bunch and are here for you.

    I too was really fit and healthy and had absolutely no idea I was really poorly, I had the nausea (mostly from the hypercalcaemia I was also diagnosed with 😬), no energy and loss of appetite which was so out of character for me. I also had a cough which turned out to be a pulmonary embolism, fun times....not really. I was really lucky I was diagnosed early stage 1c3 clear cell if you can call it lucky but I’m still here, well, positive and looking forwards.

    You will possibly have some more difficult times with the chemo and it’s side effects can be lengthy but it certainly is doable. You are now aiming for a new normal, we all have one of these and they’re all slightly different from each other’s but we get on with it as there really aren’t any other options but to get on with it. This whole thing turns your life on it’s head but you slowly come back around and move forward. The best advice I would offer is to be as kind to you as you possibly can be, if you’re fatigued don’t fight it, if you’re nauseous take the drugs, if you can’t sleep at night don’t worry that will improve it’s partly the steroids keeping you awake so try to take them before lunchtime. In general eat what you feel like, your taste will change so go with it but do try to eat healthily. Try to be as hydrated as you can, it really does help. You’re two thirds of the way there and already seeing fabulous results so keep up the good work your CA125 is tremendous.

    Take lots of care, keep us up to speed and be as well as you possibly can. Big hugs and love coming over the pond ❤️Xx Jane 🇬🇧 Manchester, UK.

  • Glad you are over the surgery and doing okay. The chemo seems to be working wonders for you so that is a positive apart from the side effects. A little walk every day is good, stay hydrated but also have a rest every day this is very important

  • Everyone has helped me so much already! ❤️ I am so encouraged. Thanks to all of you. Lots of love Peg8080

  • Hi Peg......So glad you've reached out to this forum. You'll find all the lovely ladies here very caring and helpful. I was also diagnosed at stage IV, 3 years ago. I'm doing fine. It's wonderful news that your ca125 dropped into normal range after only 2 treatments.....yay! Try to keep your positive attitude and otherwise good health. This will help you tremendously along the way. I'm wishing you the best and sending prayers and hugs your way. Judyved.....US

  • Peg, my Dr is very aggressive in her treatment of ovarian cancer, I have stage 3c clear cell ovarian cancer. I asked her what she would do if she was me. I had 18 rounds of chemo in 14 weeks. 14 of those rounds I did stomach wash chemo, aka intraperitoneal chemotherapy. I've been cancer free since my diagnosis in 2014. I took claritan but not the D one. After my immune booster shot. For 5 days this helped a lot with the aches. Best wishes, Liz

  • Thank you so much! I struggle with body aches, especially in the legs after chemo. I will try the Claritan and see if it works for me. Again thank you! Fill your life with good things, Peggy

  • Take it day of shot just remember not the one with D.

  • Welcome to the party

    Your CA level is great. Which chemo are you on?

    LA xx

  • Hi, I am in a clinical trial with Paclitaxel, Carboplatin and Avastin. You also have 2/3 chance of getting immunotherapy as well. You get 6 rounds of Paclitaxel and Carboplatin and Avastin and hopefully immunotherapy. Then Avastin and immunotherapy for 16 cycles. My cycles are 3 weeks apart. I remain positive and hopeful. Lots of Love, Peg

  • Hi! Welcome to the group. My mom was diagnosed last year at the age of 58. Her surgery was on the11th of July ( last year) you two have many similarities in fact her CA 125 levels were very similar :). She is just finishing her last round of Avastin and doing very well.

    My family is always around her. I moved back from a short stint in America just so that I enjoy as much time as I can with her. I think it’s the people around you that get you through this disease.

    I send you all my best wishes.

    Shamila

  • Thank you so much! I agree. You must surround yourself with positivity. I have always said to my children and their friends, fill your life with good things. Love, Peg

  • Hi Peg. Kathy in Seattle USA here. I was diagnosed at Stage IV OC/PPC last May. My CA-125 was around 7000 if you can believe that! Now it's at 135 after 4 rounds of chemo and surgery. I've just restarted chemo and will do another 6 rounds of carbo/taxol. I go every week for treatment. My docs are very optimistic about my recovery, and the surgery got everything except the "seedlings" in the abdominal cavity, but that's what chemo is for. Sorry you have to join our "club", but you are so welcome here. I haven't been here that long, but whenever I ask for help these wonderful women are there in spades. It's the best forum I've found. I thought Cropcrop (jane) had some great advice. It all boils down to listening to your body and taking really good care of YOU!

  • Thank you so much for sharing. It is so comforting to have found this group. These women are a wealth of information. It is still so new to me. I feel like by body is foreign to me at times now. It is going through a lot. Chemo really can create a lot of havoc. It is all for good though. We all go through it and we are strong! Your numbers are really good too! That is great! It really helps to have an optimist doctor. I have one too and he is a gem. You keep us posted on your continued progress.

    Peg

  • Hi Kathy, California here. Ask your Dr about IP chemo, intraperitoneal chemotherapy. Stomach wash. It worked great for me. Not all hospitals have the facilities, but I was sent to City of Hope. It gets all the free radicals in stomach cavity. Chemo is placed there using a Port

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