ovarian stage 4

[Pianoanddisco]

has anyone gone through a recurrence, with no symptoms but scan showing a few spots around abdomen like liver, bowel (a second line of treatment).. If so was it chemo with different drugs? Like carbo and Caylex. Did anyone lose their hair and did this treatment work ?

[candyapplegrey]

I am on second recurrence (no symptoms) with a tiny lesion on liver and my team wanted to do a third op (as big as the first one) and then carbo/caelyx (and they said I wouldn't lose my hair again but people on here have done) but I have refused this treatment at least initially. Now, another hospital have said to wait and rescan and mine has agreed. Had the scan today. CA125 has been rising but still not out of normal. I'm living with 'vague' right now. xx

[Beatyourself in reply to candyapplegrey]

Is so interesting to read they want to do big operation while you have “only” small lesions on liver. My doctor didn’t want to do a thing (I was on Niraparib) before I had Ca125 up (100) not even new scan, and he still wanted to wait for symptoms before starting any chemo treatment. He was referring to the statistics that those who start treatment earlier do not live longer are just having more chemo than group that waits for symptoms. I really don’t know, my symptoms came then pretty heavy (ascites) and now am on Caelyx/carbo. My hair started to fall a bit 26 days after the treatment so I felt devastated as my oncologist said it wouldn’t not fall but is certainly not as bad as with taxol. I do have still constant pain in tummy, bowels.

I am sorry is second possible recurrence for you. What a disease, why can’t it leave us alone :(( I wish your lesions would disappear completely ! Miracles can happen ! And wish that you won’t need further treatment! Best of luck 💚😘🙏

[candyapplegrey in reply to Beatyourself]

Thanks so much. Yes. Hospital's approach is so contradictory. First recurrence they wouldn't acknowledge or even check; second they want to attack all guns blazing. So sorry about the hair. I was told I would not lose it with c/c too. Praying for miracle for us all. Meanwhile on a couple of alternative treatments to see how they do. Good luck! xx

[Beatyourself in reply to candyapplegrey]

Hello, bit too late reply but I had hard time after taking my second c/c cocktail I am less excited by seeing aperol these days, coz is so reminds me of now …

Interesting the approach of hospital, is it the same medical team? I am really interested in the alternative treatments you are looking into if you don’t mind sharing.

I hope you are doing well, best wishes to you 💚

[candyapplegrey in reply to Beatyourself]

Thanks. Hope you're feeling better. I will PM you in Chat with what I've been taking. x

[Saintgermain in reply to candyapplegrey]

Hello, I'm on this regime for a second recurrence I have not lost my hair told it might thin a bit so far so good also the Caelyx can cause the CA125 to rise for the first few infusions due to inflammation a fellow survivor had a lesion on her liver after chemo did a scan then SBRT targeted radiation in the states its called Proton.

[Beatyourself in reply to Saintgermain]

Hello , hope you are holding and is going well for you? Interesting about inflammation, I also have few days when I feel like inner fewer and am deadly tired and also have quite some pains in my belly. I try to imagine this is the death of cancer cells.

I am loosing few hair daily when I touch them and certainly have my hand full after washing. I just got my hair back (last chemo in June 2023) and luckily it came back so dense that it is not visible. But since it grew back I didnt loose a hair so was quite in panic when it first started to fall. How many treatments did you have? Best wishes and hope it will work for you and you see results soonest 😘💚🙏

[Saintgermain in reply to Beatyourself]

Hello,

So far so good a bit of mild fatigue my CA125 after 2 infusions dropped 4 points still 211 but at least it’s not going in the other direction my Onc said it’s stable can typically take 4 infusions to drop more.

So far I’ve had 3 infusions getting the Avastin every 2 weeks having a pet scan next week to see if the stubborn lymph node is still there if it looks good consult for radiation also having a 3 month heart echo to monitor Avastin”s potential effects.

I’m not noticing hair loss maybe a few strands in the sink but it’s not getting any thicker at present I’ve been using a biotin infused shampoo maybe it’s working.

What number infusion are you on? Please keep me posted as I will as well.

[Pianoanddisco in reply to candyapplegrey]

Are you saying, you have refused third op and the carbo/caelyx treatments even though no symptoms and CA125 rising?

[candyapplegrey in reply to Pianoanddisco]

Yes. Just learnt lesion has grown 3mm more. The hospital says they may now be able to biopsy it. Thing is, I can't find out if what they're offering will truly make a difference long-term as there are two schools of thought on it (two studies). Stumped at mo. x

[Lind58 in reply to candyapplegrey]

My mom held off treatment for a year. Best of luck 💙

[Tracey1207]

hello luv .. I have stage 4b ovarian no surgery , ca125 started to increase in dec 23 they left me on parps as they doing the job .. now I have new deposits on colon which has invaded and bleeding from packpassage .. admitted to hospital and told no surgery just meds to stop bleed .. I’ve been in hospital since Monday no one from gynae has been to see me I’m not sure what will happen but I’m thinking chemo might be next . Like yourself I have questions of what they will try next im 57 so we close in age . Have you looked at different therapies ie immunotherapy? I’m looking at the moment but im scared tbh I’d do anything for more time 🩵🩵

[Pianoanddisco in reply to Tracey1207]

Sorry to hear about your bleeding I hope you are ok and the meds help stopped it. Immunotherapy wasn't offered to me. Is that something we should ask our medical team about? I know what you mean about being scared, I believe we are in good hands we just need to stay positive through all this.

[StyleK]

Hi pianoanddisco, l have clear cell 1st recurrence with cyst/tumour resting/adhered to bowel April 22, unable to biopsy due to position, was on watch & wait. Regular scans, growing slowly. Now showing signs of mestasis since Dec 23. Drs pressurising me to have (major) surgery, + chemo after, am resisting. No symptoms, low CA125. Probably mean a stoma (again) hence reluctance to agree to surgery as feel so well. l wish you well in your decision making, & best wishes to all ladies in similar situations.

[Pianoanddisco in reply to StyleK]

Hi StyleK , mine is no symptoms since my last chemo October 2023 but CA125 is rising each month after taking niraparib since Jan 2024 and recent CT showed small lesion on my liver and small part of my colon and so they want to start chemo again very soon even though I feel fantastic. I wanted to wait til I got symptoms but because of the rise in my CA125 and the lesions they found they said I should start on the chemo. Have you made your decision to do surgery and chemo or is it still watch & wait til you get symptoms?

[StyleK in reply to Pianoanddisco]

Good wishes with your decision pianoanddisco. Isn't it hard when we feel so well, to knowingly put ourselves thru surgery. And know the surgery/ chemo treatment will make us feel so unwell. I'm delaying surgery/chemo decision as mentally can't face more surgery at present. l wish you so well with your decision. Warm best wishes.

[Towergirl]

Hello, I’m on recurrence after 4 years NED. Tumour next to spleen and sml amount in Liver and across. CT scan and raised CA125 but no symptoms!

Chemo of Carbo and Toxal most was gone on CT scan but for small amount left by spleen.

Maintenance of Olaparib for 7 months, again raised CA 125 54, CT scan showed growth of original tumour and more around area . so back on chemo this time Carbo/Caelyx . Did lose hair again!! Not completely as withe Taxol but so thin needed covering.

Caelyx wasn’t too bad but did lower platelets needing GFs injections to continue. Ct scan showed all new growth gone but this a small bit of original tumour.

Without treatment mine would have grown and I’ve not experienced any symptoms!!!

We’re all different and mines HGS with BRACA 2 gene. Wishing you well with your journey and good luck xxx

[Pianoanddisco in reply to Towergirl]

Thanks Towergirl! Did Caelyx cause of lot of side effects beside lowering platelets and losing hair. Did you experience extreme nausea? Are you on a parb inhibitor now after your second line of treatment using Carbo/Caelyx? Mine was HGS stage 4b but I am BRACA negative.

[Towergirl]

I’ve been lucky so far no nausea with Chemotherapy. A few days of constipation in the first week, Caelyx didn’t affect taste or appetite, just low platelets delaying chemotherapy for last three.

Only allowed one try at PaRP inhibitor and Olaparib didn’t work for me. That’s why I’ve had to have Caelyx, classed as 3rd line.

Next, Maintenance will be hormone inhibitors.

[Pianoanddisco in reply to Towergirl]

Yes we're all different when it comes to the side effects. I hear some lose their hair and develop nausea etc and some don't. I think low platelets are common but you're right it just means delaying the treatment. I wonder if this combo Carbo/Caelyx is a stronger dose because I heard that it's given 1 every 4 weeks i think? Did you say you have started chemo with Carbo/Caelyx right now?

[Towergirl in reply to Pianoanddisco]

I found this combo easier to cope with than carbo and Taxol. My last infusion was early August, yes 4 weeks apart originally. Started early January!

[Pianoanddisco in reply to Towergirl]

Thanks for the heads up Towergirl!

Btw did u have nausea with this combo and the carbo/taxol too? And did u lose any weight for both ? I lost 40 lbs because of the nausea each time I did doing carbo taxol with each infusion and it was bad . I did take anti nausea meds sometimes it would help but it was still bad . Just wondering if u have experienced any . Thx

[Beatyourself in reply to Pianoanddisco]

I had so far first infusion carbo/caelyx. Tomorrow will be next so I am curious, how do I feel after and what I hear from my doctor. I had worse and longer nausea than from taxol. I cannot eat or even drink a lot at once coz my stomach feels so filled I have much discomfort to even breathe. I used to drink half liter water sometimes at once now can do max 1dc. I lost 5 kg but my lower tummy still looks bloated like in early pregnancy. I feel pains in abdomen sometimes. With hair starting to fall I am also questioning how strong this chemo is and what is it doing inside. Also suffer from constipation. So not sure what to say about it now. I really hope it works and kills all cancer and then I am happy to take this temporary discomfort. Best wishes to all you powerful ladies 💚🙏

[Leniko]

Hi. I was diagnosed with Stage 1C clear cell OVCA in 2008. Carbo/Taxol knocked it back. In 2014 my CA125 jumped to 78, I had no symptoms. A scan showed a tumor on my Psoas muscle. I had radiation and cisplatin, followed by Carbo Taxol, which reduced the tumor size and dropped my CA125 to normal range. I then spent quite awhile on Avastin, which kept me in maintenance.

Good luck to you! 🙏❤️