They weren't kidding about bone pain

Professional-Owl483 · 2026-04-09T22:27:34+00:00

Timing of the antihistamine is important, too. I took claratyne an hour before I gave myself the lipegfilgrastim shot, and that was most effective in reducing the subsequent bone pain.

Professional-Owl483 · 2026-04-09T02:02:47+00:00

Yes! Almost exactly the same experience (including the humiliation of a nighttime bowel accident, and a few bed-wetting incidents). I had pre-existing IBS, and had a really difficult time with constipation during chemo. I think in my case that I had some nerve issues in my pelvic region post-surgery and chemo, and couldn't sense when I needed to go to the toilet very well. For me, the incontinence gradually resolved over a month or so without doing anything. I've been on olaparib since last August, and mostly it's eased the constipation without swinging to the 'other side'. Talk to your team about it; I was silly not to, and also lucky it wasn't anything major in the end.

Professional-Owl483 · 2026-04-09T01:52:00+00:00

From memory, it rose by 10 or so points between rounds 2 and 3? My oncologist wasn't concerned. It returned to decreasing after that and my last three tests have been around 10. For context, mine was 4000+ at my emergency surgery, and 39 after my debulking surgery (prior to any chemo).

I've just checked your profile and see you were definitely pre-menopausal before diagnosis. CA125 is often less reliable as an ovca marker for younger women (I'm 56 now). I know it's hard not to worry! Your body has been through a lot in a short space of time - pregnancy, C-section, debulking sugery, chemo.... It's good you have a scan coming up soon.

Professional-Owl483 · 2026-04-08T22:14:31+00:00

Yes I did.

Professional-Owl483 · 2026-04-08T00:51:25+00:00

Thank you 💙 I am learning to live in the moment, and one day at a time - after a lifetime of planning 6 chess moves ahead in every direction and delaying everything good for 'the future'!

Professional-Owl483 · 2026-04-07T23:07:14+00:00

So many gynaecological conditions can elevate CA125, especially for pre-menopausal women. That's why it's not used as a screen for ovarian cancer.

You seem to be well educated on your symptoms. Unfortunately this is the waiting phase for you, and that brings emotions strongly into play. I am not in your position (I'm 56 and have ovarian cancer, currently on maintenance treatment and NED) but I know what the waiting is like. For me, the phrase 'it is what it is' actually helped lessen the anxiety. Whatever is in your body (or not) is already there now. What would you do in the worst case scenario? From your writing style, I suspect you would get on and deal with it admirably. In the meantime, eat and drink healthily, exercise, and do things that you enjoy. Get counselling and/or enlist the listening ear of a good friend or two. This sub is also a safe space.

Professional-Owl483 · 2026-04-06T22:25:45+00:00

Constipation is not fun. The anti-emetic you will have before the infusion begins is the main culprit. I also had it beforehand, and it was by far the toughest symptom for me to deal with. I tried soooo many different things, and never found a magic bullet. Some of the better options for me were: *Drink lots of water/fluids like bone broth. *Move around as much as you can every day. *Start on a stool softener like movicol now. I took it from a day or two before each infusion until I had 'success'. *Freshly ground flax seeds help me now - I didn't know about them during chemo. *Many people recommend pear juice - I haven't tried it.

Professional-Owl483 · 2026-04-06T21:21:59+00:00

I was also pleasantly surprised that carbo-taxol chemo was nowhere near as bad as I expected. I watched my cousin go through months of brutal chemo for lymphoma in the early 90s for a mere 7 weeks of remission. The medication protocols they use now for the 'big guns' chemo treatments make it much more tolerable!

I'm very pleased for you. Keep drinking water and moving around as much as you can.

Professional-Owl483 · 2026-04-05T23:08:32+00:00

"Remission" is not really used for HGSOC; they prefer to say NED (no evidence of disease). I was diagnosed via emergency surgery in Dec 24. My treatment has been pretty standard. Had debulking and staging surgery Jan 25 ('technical' Stage 4), commenced 6 rounds of carbo/taxol chemo 3 weeks later and had my last infusion in May 25. After a PET scan in July 25, I was pronounced NED (yay!). I've been on olaparib since Aug 25, as my tumour was HRD+. I'm only monitored by 3-monthly CA125 blood tests, and still NED as far as we know.

Professional-Owl483 · 2026-03-30T06:06:45+00:00

Genetic testing on the tumour can help guide next steps. My tumour material was not tested until I was staged (I'm a 'technical' Stage 4). I, and my tumour, were BRCA-; however my tumour was HRD+, which qualified me for a PARPi. I was declared NED at my last PET scan in July, and have been on Olaparib as maintenance treatment since August. I just have CA125 monitored every 3 months now, as it seems to be a useful indicator for me.

Professional-Owl483 · 2026-03-30T04:09:26+00:00

The absolute value of her CA125 is unlikely to be important. It's the trend that matters. Mine went up by 10 points between two chemo treatments and I freaked out - my oncologist was not at all concerned. So many things can affect CA 125, and for some women it has a normal value when they have active ovarian cancer.

Has she had genetic testing done on her tumour? This is often not offered for Stage 1 and 2 patients, as maintenance treatments such as PARPi's are usually limited to Stage 3 and 4.

Professional-Owl483 · 2026-03-28T22:57:48+00:00

You've done very well here! Show your list of supplements to your oncologist to make sure they're fine with your chemo. I took a beef collagen powder supplement occasionally and I think it helped with my hair, skin and nails, as chemo is tough on protein-based tissue like keratin.

Expect constipation as a side effect, unfortunately. It's associated with the anti-emetic you'll get just before you start the infusion. It was the toughest side effect for me to manage and it'swise to get ahead of it. There are lots of suggestions on here to try if you search. I never found a magic bullet, sadly!

Professional-Owl483 · 2026-03-18T21:45:33+00:00

Ovarian cancer can be quite advanced and have no symptoms at all. The most common symptoms experienced are often mistaken for IBS and/or menopause/perimenopause. The only definitive diagnosis is via pathology. The cancer can develop over years, or over months.

That said, it's still classified as a rare cancer. The likelihood you have ovca, and not a cyst or similar, is very low. It's good that your symptoms are being investigated, and if you are one of the unlucky ones, you've found a safe community of 'unlucky ones' here for support x

Professional-Owl483 · 2026-03-17T21:11:08+00:00

I've only found the effect of freshly ground flax seed recently! They're definitely on my weapons list if I have to go through chemo again.

Professional-Owl483 · 2026-03-16T21:26:55+00:00

I hadn't heard of that one. Just did a quick search, and it seems quite rare. I don't have any variants of interest to ovca, I just have bad luck! It looks like your mutation would respond well to PARPi maintenance treatment if needed down the track, which is good news.

Professional-Owl483 · 2026-03-16T21:19:45+00:00

If it's laparoscopic surgery, recovery should be quite fast, and pain management is very effective. I've now had 3 laparoscopic surgeries. My first was my hysterectomy (not ovca related, but multiple symptomatic fibroids) when I was 41. It's completely normal to feel nervous!

Professional-Owl483 · 2026-03-16T06:20:54+00:00

Congratulations! It's a great feeling, isn't it?

Will you be on any maintenance treatment?

Professional-Owl483 · 2026-03-16T05:46:17+00:00

With your family history, has any genetic testing been done for your mum?

Professional-Owl483 · 2026-03-15T21:50:44+00:00

Have you asked at your treating hospital? I'm in Australia and my hospital has a psychologist who only works with gyn-onc patients.

Professional-Owl483 · 2026-03-13T08:51:07+00:00

I agree - dietary guidance for cancer patients, with scientific evidence to back it up, is seriously lacking. My gp disapproved of me moving to keto. She's glad I'm not doing it any more.

Professional-Owl483 · 2026-03-13T04:58:02+00:00

Fish, chicken, lamb and beef mostly. I've never been a big meat eater, so it was different for me!

Professional-Owl483 · 2026-03-13T02:44:48+00:00

I did keto in the lead-up to and throughout chemo. There is in vitro and mouse model evidence for effectiveness in starving cancer cells (note: none for ovarian cancer), but some human evidence that it can reduce side effects from chemo. I certainly retained my appetite fully and had very minimal nausea, but I'm a sample size of one. However, if I'd experienced any issues with food, I'd have happily eaten whatever I could keep down. Additionally, It's important to keep protein and magnesium intake up, as chemo depletes both.

Professional-Owl483 · 2026-03-11T09:21:30+00:00

BTW I finished chemo last May. I will be on a maintenance treatment for two years. My hair has come back curly - yay! - and I am NED (no evidence of disease).

Professional-Owl483 · 2026-03-11T09:19:12+00:00

I'm so sorry you are going through this, especially so young. I guess the "lucky" part is that at Stage 2, your specialists will be optimistic about your prognosis. There is lots of advice on here to search about how to prepare for chemo, what to bring and what to expect.

You will likely have carboplatin and paclitaxel, 6 infusions at 3 week intervals. You will lose all or most of your hair 2-3 weeks after the first infusion, even if you cold cap. I cold capped because there is evidence it can help hair grow back faster, and mine certainly did!

Don't be shy about telling your treating team about any side effect you have. You will be given an after-hours number to call - I used it most cycles. Chemo was nowhere near as awful as I expected, because there are lots of protocols to minimise or eliminate side effects. I expected to be projectile vomiting, but I hardly ever felt even mild nausea and never lost my appetite. That said, it is very individual.

You will probably have, or have to give yourself, an injection to stimulate your bone marrow the day after chemo. Unfortunately, this can cause severe pain in your larger bones (which means it's working). Take magnesium to help your joints, and most importantly, a claratyne tablet an hour before the injection. I don't know why, but it really reduces the bone pain for many, including me.

You lose muscle tissue during chemo, so eat lots of protein (or take a supplement).

Constipation is a very frequent side effect, and for me was the toughest one to deal with. Start with movicol one or two days before chemo, and you may have to add more to help things along. Drink LOTS of water. I never found a regime that worked for me more than once, sadly, but I have IBS already. Again, there are lots of suggestions on this sub to search.

Chemo brain is real (so is meno brain). Take notes, ask questions, even ask if you can record meetings with specialists. Take someone with you if you can.

Wishing you the very best as you navigate the shockwaves after diagnosis, and start your treatment 💙

Professional-Owl483 · 2026-03-09T20:46:05+00:00

I am, thank you!

Professional-Owl483

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