2nd recurrence : Hi all - I was dx May ‘18 with... - My Ovacome

My Ovacome

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2nd recurrence

ElayneZ profile image
13 Replies

Hi all - I was dx May ‘18 with stage 3 OC. Had first recurrence June ‘20. Now I will be starting Carbo&Taxol for 2nd recurrence. CT scan shows peritoneal lining issues and tumor in lower bowel. Thankfully it listed organs as “normal”. I’m hopeful C/T will get me NED again. Has anyone had peritoneal issues that can share how they did after treatment? Thank you! Blessings!

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ElayneZ profile image
ElayneZ
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13 Replies
delia2 profile image
delia2

Hi Elayne. I'm sorry you're having a recurrence and having to start chemo again. I had quite a few peritoneal deposits when first diagnosed but I think the surgery got most of them. At my first recurrence I had some small spots on my peritoneum and the chemo did get rid of them but didn't completely get rid of the main nodule. I had carbo caelyx that time. However I went on olaparib after and that made everything disappear after a few months. I feel like carbo taxol is the gold standard and it's good you're still platinum sensitive. What will they do for the lower bowel? That's what I worry about because my original tumor had grown into my rectosigmoid colon and my original surgery didn't quite get it all. I'm ned now but that's where I get twinges of pain and worry. Sending positive thoughts and hugs.

ElayneZ profile image
ElayneZ in reply to delia2

Hi Delia - thank you for replying. That’s wonderful Olaparib is working for you! I was on it last 9 months but each month my CA125 inched up. So CT was ordered and showed the tumor in small bowel and peritoneal issue. Other than some discomfort in abdomen some days - I feel well. Met with Dr and he suggested Carbo&Taxol- and offered avastin but I asked if we could do C&T initially and see. It worked well for be after surgery and I was 18 months NED. He said we will discuss Avastin as maintenance. My understanding is the C&T is what they’ll do to get rid of tumor and peritoneal issue. I expected needing chemo but was surprised when reviewing scans. I hope you continue to do well. That’s best reassurance for all of us. Take good care!

Miriamn57 profile image
Miriamn57 in reply to delia2

Not peritoneal issues. But it was in my bowels. I have had Carbo/Taxol. I put thin socks on, 2 Quart baggies full of ice for my feet and hands while being given the 3 hours of Taxol. It helped with reducing neuropathy

ElayneZ profile image
ElayneZ in reply to Miriamn57

Thank you. I had Carbo&Taxol after initial surgery. It got me Ned for 15 months and praying it will again. The icing of feet and hands is a good reminder - I will do that again. Also praying it zaps tumor on bowel. Hope you are doing well! Blessings!

Hi ElayneZ, sorry that you are going through a recurrence. I was diagnosed stage 3/4 in Oct. 2019. The carbo and taxol work well against the cancer cells along with surgery. I have been on Niraparib for 18 months now and I am doing ok so far with my scans. They found my cancer in my intestines, omentum and my abdominal wall. I suppose this is considered in my peritoneum. Anyway, happy that you can continue, because you are platinum sensitive. It’s a rough road for sure and I wish you the best. You have such a wonderful smile on your profile. I live in Michigan and I see that you are in Ca. I am 75 and I feel grateful that I can keep going at my age. Blessings, Donna xx

ElayneZ profile image
ElayneZ in reply to Pianoplayer731021

Thank you Donna! I will remain hopeful for us both! I was on Olaparib for past 9 months but ca125 inched up each month. CT scan confirmed my recurrence. Praying chemo will zap the bowel tumor and peritoneal issues. Stay warm! And well!! Blessings to you!

Hi Elayne ,

I’m sorry that you are going through such a tough time. I was first diagnosed in 2015. Chemo 1 was Taxol, Carboplatin & Avastin. Recurrence 2018. I had a small op to remove a tumour from my liver but I also gad spots on my bowel and issues with lymph nodes. Second Line chemo was Carboplatin, Gemzar & Avastin. I’m fine at the moment. I’ve been on Olaparib since May 2019.

Hopefully this chemo will work well for you and that you’ll be NED by the end of it.

It’s not easy to be facing into chemo again. Be kind to yourself.

I’m thinking of you and wishing you well.

Anne 🤗

ElayneZ profile image
ElayneZ in reply to

Thank you Anne! It’s encouraging to read of your times being off chemo. That’s wonderful you are doing well! . My ca125 has been increasing so I expected I’d be starting chemo - but seeing the tumor on my bowel after the CT surprised me. I’m hopeful Carbo&Taxol will get me to Ned again. I tolerated it fairly well in 2018. Thank you again for sharing! Take care! Blessings to you!

Nicky100 profile image
Nicky100

Hi lovely lady. Sorry to hear things have come back. I had a recurrence too. Have you been recommended surgery? xx

ElayneZ profile image
ElayneZ in reply to Nicky100

Hi - sorry you had a recurrence. Did you have another surgery? Or chemo? Hope you are feeling well. My doc explained when surgery or radiation would be suggested - neither was my scenario. I will be starting Carbo&Taxol for this 2nd recurrence. I was Ned 18 months when I finished Carbo&Taxol in 2018 after dx and surgery. (For first recurrence I had Carbo&Doxil in 2020.) Praying I tolerate chemo and will again hear “Ned”. Take care!

Nicky100 profile image
Nicky100 in reply to ElayneZ

Hello

💙 Thank you. Yes I had another surgery after I researched all option s. My local hospital told me that my only option was more chemo. But I felt there must be something else. So, after a second opinion, I had more surgery and then more chemo. I am doing really well now. I was given a bleak prognosis 4 years ago, and with the help of a wonder surgeon and wonder drug, a Parp inhibitor, I am living a pretty good life. I hope your treatment goes OK. I can always recommend a second opinion. But if you have a good medical team, I'm sure you will do well. xx

ElayneZ profile image
ElayneZ in reply to Nicky100

That’s wonderful! I was on parp 9 months when I reoccurred - Olaparib. The recurrence is in my peritoneal lining and a tumor in small bowel. Sounds like chemo is best way to go for me this round. Thank you for sharing. It’s always great to know of positive scenarios! Bless you!

Nicky100 profile image
Nicky100

The best of luck. If you need a second opinion, do pm me. xxx

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