Stage 3C Ovarian Cancer, Now What???

[tereasa]

Hi Everyone!! I'm Tereasa, 58 years old, and I'm new here. I was diagnosed with ovarian 3c, grade 3 cancer in November. I had complete hysterectomy and debulking surgery the week of Thanksgiving, and just had my second round of chemo yesterday. I would love to hear from others in the same boat as I. This whole process has gone very fast for me and sometimes I feel like it hasn't even sunk in yet!!!! I would love to hear others experiences, and what to expect. So far I have done well with the chemo. My CA125 test before surgery was 2779. Yesterday it was 250. I'm trying to stay as positive as I can. My husband I were planning for retirement and boy has this put a big kink in things. :), but still trying to plan for a future. Thanks for listening, and needing some support.

[Tesla_7US]

Please read my profile. I'm 3C hi grade serous epithelial. Currently 5 months NED and feeling better than I've felt in over 3 years. You can recover from this!!! Tesla

[Hidden]

hi! welcome to the group noone wanted to join. re: what to expect--your md should outline what h/ her treatment plan for you will be, with the understanding that its all subject to change. if this information is not offered, please ask for it. do expect hair loss, although some escape it.

generally, there will be a series of chemo trxs., along with intermittent scans. hopefully scans will demonstrate reduction in disease, accompanied by ca-125 levels returning to or approaching normal. because you'll be getting chemo along with necessary blood draws for lab tests, insertion of a port, for reliable venous access, is a helpful adjunct to treatment, and avoids multiple sticks. once chemo is finished, and you've responded well, you'll be followed regularly for monitoring.

labile emotions accompany all this for most of us. it is entirely normal to be frightened and to need support. this board does offer that, and there are usually support groups for cancer pts. at most medical centers.

we all differ to some extent regarding how much information we want. advocate for what you need to know, and discourage any effort to over saturate you if you dont want lots of statistics, etc.

if you are working you'll need to consider whether, and to what extent and when, you can return to your job.

put yourself first for now. mostly, dealing gets easier as you become accustomed to this new reality.

this is a minimal sketch of some of the highlights. others will offer additional information...

above all--good luck!! all of us on this board have been or are where you are. you are not alone in what you're experiencing.

( from a stage iv survivor, diagnosed 5/15. )

[GBIRVMIC]

Hi Tereasa I too am 3C diagnosed in Dec 2015 and same surgery as you. My chemo with Avastin finished in June and I'm currently continuing on a maintenance programme with Avastin until March. By 2nd chemo my hair was falling out and I was bald about 2 wks later. It was upsetting but if all this meant me getter better then reality head kicked in. I was hospitalised a few times as very ill with high temp and blood counts low. Side effects of chemo were just awful with terrible mouth ulcers, lost weight as couldn't eat, headaches (drink plenty of water), very tearful and the 3rd was my worst. It's cummulative and boy I was just so ill. You sound very positive which really does help on this long journey. This forum is amazing and so many ladies fighting this vile disease and all hear to help one another.. it really is a lifeline. I wish you well on your journey and keep us posted how you are. Love Michelle xx💐

[rppizio]

Good Morning Teresa,

you are in a good place for support. From what I have experienced so far is while everything is going fast, it really is much better than sitting around doing too much thinking... it can take us places we don't need to go. Lots of water and more water and did I say water, LOL... that is one of the biggest gifts you can give yourself to minimize chemo effects after each treatment. While many side affects are "normal" we still need to address quickly so that they are minimal. I was diagnosed with ovarian 3c also back in April of 2016... so if I can help will be glad to. please feel free to check my profile if that will help fill in some blanks. Best of luck.

[jdillon]

Hi Tereasa! Glad to hear you are post surgery and already on your second round of chemo that you are tolerating well! I understand what you are saying about getting down the road and feeling like the reality hasn't sunk in yet. I felt the same for quite some time. In a lot of ways that is probably good.

I'm guessing you are on Carbo/Taxol.?? If so, you may already be experiencing hair loss. Mine started on day 14 and I shaved it off 5 days later. I was a fortunate one that escaped a lot of the nasty side effects you read about. (I had a lot of issues, but all were do to post surgical complications.) As for the chemo.....The 5 days after treatment held the 'yuckiness'. I took my Zofran for nausea like clockwork for those days and never had any issues with sickness. Overall it felt like the flu coming on where you are achey all over and very tired.

Day 1 was okay because of the steroids they gave me before and during the treatment. Day 2 was the crash and I slept pretty much all this day and Day 3. Day 4 I was feeling better and Day 5 I was functioning again. Then weeks 2 and 3 were always good. That's when I got work done, shopped and even socialized a little. ----- Throughout all 6 rounds my energy levels were way down. By early evening I was wiped out from fatigue. Hindsight is 20/20 and looking back it really wasn't bad........much better than what I had worked up in my head!

I finished my firstline treatment Nov. 1st. My CA125 never normalized and they found I was Platinum resistant. I started secondline treatment consisting of Avastin/Doxil in December and just completed my second round this week.

As I'm sure you have read, clear cell can be an aggressive and sneaky bugger. This site has been a wealth of information and comfort from other women just like us. Many with great survival stories. One of my favorite quotes I've read was just yesterday...."Continue to plan for the future, but live for today." If there is one positive thing this disease has brought me it is focusing on that exact sentiment.

If you have any specific questions or concerns please feel free to ask!

Hugs!

Jodi

[tereasa]

Thank you all so much for the wonderful information and support. So sorry I'm just responding to you. I've been pretty weak today ( day 2 after chemo ). That's what I get for bragging about how well I was doing!!! Ha!!! Jodi, thanks for sharing your favorite quote, I will not forget it. I look forward to sharing and listening.

[Nicky100]

Hi Theresa, so sorry to hear that you in this group...it is horrible isn't it?

You are among lovely ladies here and I wish I had found this wonderful site a year ago when I was diagnosed.

It sounds like you are doing brilliantly and are having amazing results with your ca125 tests! This is really positive and you should do really well.

It seems as though you have been thrown at the deep end like many of us here but at least things are moving fast on your treatment and although it seems like a horrible blur for you right now, this feeling will pass. The chemo cycles go fairly quickly although I know it might seem like an eternity right now...

My best advice for your stage is to plan nice things and put them into your diary. These will give you a focus and also something to aim for and a treat to yourself on the days that you are feeling OK. I also kept a journal and decided to try and look for pampering things to do in between. I even became a bit obsessed with doing this!

If you need hair advice there is a great charity called Heathers Hair, you can google it, they do free hair pieces, fringes etc and are very helpful but I'm not sure on whether your hair is OK which it might be..

Make sure you drink loads of water to flush the horrid stuff out and I would recommend taking some supplements to boost your immune system- very important. You could also ask the hospital to give you FILGRASTIM. It is expensive so they won't volunteer it but you can ask! I asked for it and they gave it to me. It boosts your white blood cells and gives you a much better chance of boosting your system and fighting off infections.

I hope you have support and are doing ok, make sure you rest well, I am sending you love xxx

[Catmets]

Hi Theresa,

There's a new nausea drug at least new to my hospital. Varubi. It's supposed to work really well.

Good luck.

Catherine

[Suzanne333]

Hi Tereasa.

I too have high grade stage 3 ovarian cancer. Was diagnosed last June and started treatment in July. I had three lots of taxol/Carbo and avastin. October I had debulking which was very successful and after a scan was told I'm in complete remission. I still had the three mopping up chemos and had the last one yesterday.

My CA225 before chemo was 5000 then it dropped to 3000 then 414. After my op it was 29. It's now 18.

I still have avastin intravenously till October but I'm doing well. The inly side effect I got from chemo was tiredness. No nausea etc. I was lucky.

I just keep positive and keep laughing and doing what I can.

I always hang onto the words of my oncologist. He says they treat ovarian cancer like a chronic disease. There is a high chance of occurrence but it's highly treatable and there are so many more things they can do that they couldn't do twenty years or so ago.

Stay strong and positive. I've had melt downs. We all have. It's very normal.

Am always here to help with any questions.

Xxxxx

[tereasa in reply to Suzanne333]

Thank you for your encouraging words. I had debulking surgery first, and will have my third round of six carbo/taxol next week. I am not on avastin. I may talk to my Oncologist about it. My last CA125 was 250, down from 2779 before surgery. I was soooo happy!!!! I truly am trying to stay positive, it's just so comforting to hear from those that are in remission, Thanks again Suzanne

[Suzanne333 in reply to tereasa]

Hi Tereasa.

This site is so good. We can all relate and support each other and can really understand how we all feel. I've read many stories and heard stories about women who have very positive outcomes. Try and keep as positive as you can. Rest when you need to and be kind to yourself.

I'm planning to stay in complete remission for a very long time. You take care and we are all here for you. We are all fighting warriors xxxx