Hello! New poster…

[georgialocksss]

Hi all,

Nice to meet you! My name is Georgia, and I can’t tell you how much reading this forum has helped me over the past year. It’s taken a while, but I’m now finally getting the courage to post.

I’m 25, my fabulous mum is 53, and was diagnosed with stage 4 in December 2022. She’s really fit and healthy, so they’ve always been really positive.

To quickly run through her treatment, she had 3 rounds of chemo, then a major debulking surgery and hysterectomy where they said the cancer had spread to her omentum and chest (though not her lungs or actually any other organs, and they shaved a bit off her bowel). But the surgeon was really positive, and told mum he’s confident he got all of it, and had generally a good feeling about her haha!

She’s since had 3 more chemos, is in remission, and has had 9 out of a year’s worth of bevacizamub maintenance treatments. There’s always been a lot of positivity from her consultants, who every step of the way have been genuinely astounded by how well she’s responded to treatment and surgery. He actually also said he would have said it was more stage 3C than 4.

So we just had a call with a registrar after her most recent bloods, and wanted to share with you guys to see if you have any wisdom to share!

The registrar started off by saying the bloods were ‘genuinely remarkable’ and that they’re really impressed with them. She was really positive, and then said the CA125 (691 on diagnosis) has jumped slightly from 15 last time to 22. She said that her colleague said she was being overly cautious but because they hadn’t done a scan since august, they’d just book her in for one in nine weeks and check everything is okay then. But stressed it didn’t need to be any earlier, and they really were just being cautious. She also said my mum is a ‘CA125 secreter’ so she probably will have higher levels anyway slightly.

Clearly, my mum is massively focusing on this jump. I just wanted your thoughts? They also said potentially she had the bloods too close to the bevacizamub treatment (only about 5 days after) so that could have made them fluctuate.

I’m not really sure what I’m asking for. Maybe just some insights from you lovely ladies. Do you think we should be worried? It’s difficult cos I can’t express how positive they’ve been, but my mum is struggling to focus on anything but the slight jump. We almost just wish they hadn’t said, as they don’t seem that worried! Would just love to hear any of your insights.

Thanks so much,

Georgia xxx

[Lyndy2]

Hello and welcome!

It’s always scary when the ca125 jumps but it’s not one jump that is significant, it’s a persistent upward trend. So this jump may well be something else (covid vax, cold, uti etc). But her team are doing the right thing in booking a scan which can be reassuring if it’s clear.

The trouble is your Mum is now in a waiting game when it’s all too easy to convince yourself that disaster is approaching.

Learning to put the things you can’t control to one side is part of the process. It’s hard but she can take real confidence in her journey so far.

I was diagnosed with stage 4 in 2015. I have had one recurrence but I am really well despite everything. xx

[georgialocksss in reply to Lyndy2]

Thanks so much, Lyndy! This is really good to hear, and also so glad to hear you’re doing well x you’re right about it being a real mental battle!

[Katmal-UK]

Hi Georgia. I’m sorry to hear about yr mum but glad to see how well she is doing. I totally get yr mum’s worry regarding the jump in the CA125 but firstly she needs to try and focus on the fact it’s still well within normal limits and there are lots of things that can affect the reading. Having said that mine sits below 3 and when the reading came back at 3 I started to worry! Hopefully you can get yr mum to focus on the fact that it is still well within normal limits and that worrying won’t actually change a thing but ruin the here and now. Try to focus on the positive fact that a scan is being booked. Hopefully if yr mum is feeling ok then that’s another positive. Btw, I trialled Avastin in 2007/2008, stage 3b OC HGS, still here in my 16th year despite 2 recurrences, currently 9 years NED albeit on a parp inhibitor. Big hug to you both xx

[Doughnut21 in reply to Katmal-UK]

Hello Katmal, I was wondering if you could tell me which type of PARP Inhibitor drug you are taking? I've had a 1st recurrence after Chemo, surgery and Avastin last year and then was NED for 4 months after that, but since 1st recurrence & Carbo / Gem chemo, this year,I've been taking Niraparib (lower dose 100mg) for a couple of months and it's causing alot of nausea and vomitting which is very unpleasant as I don't feel like eating much. It's great news that you are 9 years NED, even though on the Parp inhibitor. I hope you continue to keep as well as possible and have a lovely Christmas and a happy and healthy New Year!

Do you mind me asking you what age you are? (I'm 53 and was diagnosed at 51 years old, 2 years ago.)?

Love & best wishes, Debbie xx

[Katmal-UK in reply to Doughnut21]

Hi Debbie. I’m on 600mg per day of Olaparib (also known as Lynparza). I’ve been trialling it since beginning of Jan 2014 and have to admit even I’m astonished to have been so lucky. I’m 63 (well 64 next week but let’s not go there lol). I was 48 when I was diagnosed in Oct 2007. I assume you have anti sickness meds, if not you need some, if what you have aren’t working you need to ask to try others, there are others out there. Best wishes for Christmas and the New Year to you and your family. Big hug, Kathy xx

[Rai_Nakoa in reply to Doughnut21]

Hi Debbie!

I was diagnosed stage 4 in Jan 2021 at age 49…had 6 rounds of chemo and debulking surgery in June 2021…been on Naraparib since July 2021 and just had clear CT scan 2 weeks ago and all is good!

I initially started on 200mg dose, but bloodwork was a mess…and I had a lot of nausea and no appetite (I weighed only 115lbs at the start of Naraparib). They lowered my dose to 100mg and after a few weeks, everything settled down and my bloodwork has been good every month since…

Even on the lower dose of 100mg…I did still have nausea, so I started taking my dose about 2 hrs before bedtime and that was the ticket for me😬. I gained back my appetite and have very little side effects (sometimes blood pressure is a little high)…and am now at a healthy steady weight of 135lbs for the last 12 months now.

Maybe try taking the Naraparib at an alternate time of day…it may help. I do think it does take 6-8 weeks for any changes to settle down, and my side effects initially got better after a few months on the medication.

Trish

[Angela2932]

Hi Georgia. I was diagnosed HGSOC stage 3C in Aug 2019. A graph of my now 3 years of CA-125 measures would look like a saw-tooth, with ups, ups then downs, all willy nilly. It ranges from 10 to 28. Of course, I prefer the downs, but have been in remission the whole time. Our guess is that I have various degrees of inflammation going on from one thing or another in my body. So that’s my pattern. Your mum is new to this journey and really doesn’t know yet what her pattern is or will be. But of course we all want to know, for sure, what’s coming our way! We can’t know till we know, and my doc tells me there is much debate about even doing CA-125 draws because it brings so much more anxiety into the process, and is affected by so many other things. . I think it’s great that her doc’s are so positive, and she should trust that. Best to you both!

[Frenchhouse3]

Hi Georgia, I was diagnosed stage 3C back in May 2019 and have been in remission since my ist line chemo and surgery which finished In November of the same year.

My CA125 is usually around 18, last one 16. However, in the early days my CA rose to 39 in increments. I was beside myself!

However, as my chest infection receded ( from suspected Covid) it went back down in increments to 18 again.

My Onc nurses said that this is very common and not to worry until I have to! They were right. I still do panic if it’s a bit higher but so far I’ve been incredibly lucky.

Hopefully, it’s just a little bit of inflammation your mum may be experiencing without even being aware ( eg water infection, chest infection etc).

It’s great she’s having a scan but do tell her that it’s a fairly common occurrence.

Best wishes and happy Christmas

Denise xxxxx

[georgialocksss]

Hi ladies! I just wanted to say thank you so much for these messages. I took a break from social media for a couple of months, but I can’t even begin to explain how much all your replies helped my family and me over Christmas. Xxxx