Chemo is done, what is next?: Thank you once... - My Ovacome

My Ovacome

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Chemo is done, what is next?

Lind58 profile image
7 Replies

Thank you once again to all the amazing ladies on here who have truly kept me going during the darkest time of my life. My mom has just finished her chemo for late stage Ovarian cancer. She had an optimal debulking surgery, and has had 6 infusions of Taxol/Carbo. It has been a bumpy road but Mom has remained strong, and it is surreal to think we came to this point. She is eating, gaining weight, staying in good spirits and has done relatively well throughout her treatments. She has maria condoed her entire house, donated as much as possible. She looks fabulous, made it to my wedding and has continued to be her kind, amazing self. Her CA125 was 489 upon diagnosis, 24 right after debulking surgery, THEN - Every three weeks: 12, 8, 6, 5 & today it was 6. I am wondering if I should be concerned. I know it is a point, but does this mean a slow rise? I pray to god not.

We had our midway scans after her second infusion, and the doctor said all is looking good. From my understanding their was not much left and this was mop up. Just wondering from your personal experience - What did your first scan show after your front line treatment?

Wishing you all well!

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Lind58 profile image
Lind58
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7 Replies
Katmal-UK profile image
Katmal-UK

Hi Lind, Sounds like yr mum is so doing well! I cant comment on the scan as I didnt have mine until the end of chemo but have had experience of my CA125 going up by a point (started wondering if this was the start of it rising) and was told it can be the way the result is read in the lab, so a point or so difference is fine :), Mine was back to less than three the next time . Wishing you and yr mum all the best xx Kathy xx

hy xx

Lyndy profile image
Lyndy

Hello Lind58

You have been a wonderful support to your Mom during her treatment- now she is in calmer waters it may be time to breathe out and to refocus on the impact of all this on you. I say this because I noticed my daughters tried to wrap me in cotton wool but gradually they moved on and began to get on with their own stuff.

It’s not that they don’t care but they and I know that we can’t micromanage my recovery- it may return, it probably will but for now life is normal. Enjoy your time with your Mom right now and let go of what happens next. That’s my advice xx

Cheryl4677 profile image
Cheryl4677 in reply to Lyndy

I can clearly echo the same with my two daughters. I’m happy that they are making plans for themselves and that their every thought has ceased to be how I will manage! I’m feeling well and trying to engage myself with things that give me pleasure. Singing, voluntary work, grandkids and family. I’ve had more contact with my brothers this last year and my sister is always there for me although I sense her anxiety. My husband is also trying to keep himself busy and avoiding negative thoughts. My garden is beautiful and I’m hoping that I get to see it develop as we only moved here three years ago and had to completely gut it and start over again!

I’m waiting to see if I can be accepted on the ICON9 trial since stopping my carbo/gem chemo. CA125 is down from 270 to 60 at last test. It was nearly 5000 at diagnosis. I’ve been told it can take 8-10 weeks to complete tissue analysis, bloods etc.

Morning Lynd58, I had my "end of treatment" scan which was "no visible disease" my CA125 was 38, so my medical team put me on watch and wait, I had another scan 3 months later and again it showed " no visible disease" but my CA125 has risen to 102, still no treatment as my medical team prefer to only treat when something shows up on the scan or you have symptoms, as I am free of any symptoms at the moment I am back on Watch and wait until June, not easy but I am trying to get on with life, and try to remain positive. A CA125 of 6 is brilliant, mine has never been that low, your Mum might be offered a maintenance drug such as Olaparib, or go on Watch and wait, either way her medical team will keep a close eye on her. Good Luck x

bamboo89 profile image
bamboo89

No, you absolutely should not be concerned. Any reading up to 35 is insignificant and considered 'normal', and the CA125 fluctuates quite naturally because its not just linked with ovarian cancer, it can be raised for other reasons, such as inflammation, infection, recent surgery or something. As tests go, CA125 is a very rough guide - what they look for is doubling, then another doubling within a week or two, and then they might order up scans to see what's going on. And even then, they might find nothing. Most oncologists prefer to watch for symptoms rather than simply relying on CA125. I have a friend who had breast cancer years ago, and CA125 is one of the checks they use for that too, so you can see its not exactly the mother lode where OC is concerned. They use it though because they don't have any more definitive blood tests they can check that might be much more accurate for OC. Just remember, if its under 35, and not rising rapidly month on month, then its fine.

Maus123 profile image
Maus123

Hi Lind. Well done to her and you. That's a good ca125 too... nice and low.

My scans always showed one small thing or the other... a small delosit in the sigmoid colon, a large lymph node, liquid in the douglas pouch etc. It was always something different and what was recorded one time was often not seen again 3 months later... so we did nothing for a good while.

Only the large lymph nodes came back to bite me after more than 2 years, accompanied by a sharp rise of my tumor marker. So... I guess one develops a bit of thick skin, after initially falling over with a heart attack every time something is mentioned.

May your mom be rid of the beast for good. xx. Maus

Trathi profile image
Trathi

Hi Lind58, I am so pleased to hear about your mum. She is a strong warrior, who is getting on with it.Remember the Ca125 is just a marker really and from what you say it is within normal limits now (cut off is 35 so anything over this would be abnormal). It can raise due to other things such as infection, etc.

I have Carbo/Paclotixel following my surgery as a mop up, and it worked for a year when the cancer came back. But please bear in mind everyone is different and it does not mean your mums is going to as you will have read from various people.

What I would advise is if your mum feels anything different has changed, if she feels pain or that something is not quite right, go and be reviewed.

Sending lots of love 💕 hugs 🤗 and positive thoughts to you and your mum. Stay strong and positive.

Tracy xx

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