My worst nightmare came true. I had some indications on CT scan already in January, that something is cooking. In June CA125 was increased to 100 and another scan was done that confirmed more activity incl some new ascites in abdomen and 1,5 cm hyperdensity in liver. We were then a month before hols, my doctor said till I have symptoms we do nothing just switched me from Niraparib to tamoxifen and figured we wait and see for symptoms. I went back to him 3 times past month to ask if it was good idea to fly to US (from Netherlands) as I was scared something is going to happen. He told me to go, enjoy, send postcard, it could be 6 months nothing gonna happen. and after all we go to US, so what I am worried about. … Moment we landed I figured my belly is bloated. 3 day later I ended in hospital that confirmed large ascites so we flew back home and I got 6 liters drained on Wednesday. Called with oncologist today and he says we need to go to chemo and I can choose from 3 options (not sure yet which). One of them is chemo I had last year when diagnosed carbo/taxol - but wonder if it makes sense if it recurred so quick?
History: Diagnosed jan 2023, HGOC 4B, 3xchemo, debulking,3x chemo, august 2023 started with Niraparib as I was BRCA negative. Switched to tamoxifen in June after Niraparib didnt work apparently. I am 42.
Fun fact 1: I suffered from 20 hot flushes a days since debulking surgery last April. And since my belly got bloated again they are completely gone, I didnt sweat a drop either. Anyone experienced anything similar?
Fun Fact 2: I am getting married end of august …. We waited for year so I have hair and all this time I was scared I will recur before that. So I i did. Sorry for long post, I guess is one way of digesting this nightmare Much hugs and love to all of you and thank you for reading me.
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Beatyourself
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I am so sorry to hear you are going through this awful journey. Similar to yourself, diagnosed June 23 6 rounds chemo then debulking 6 weeks later started Avastin & May 24 1st recurrence in 2 lymph nodes. I'm on Carbo/gem, and awaiting results of CT scan. So hopefully will see a reduction.
Thinking about your wedding I haven't lost my hair but its gone a bit thinner. Focus on whats ahead your very special day. Congrats xx
Thank you Pixiepurple ♥️ warm hugs to you too for having to go though this journey
May I ask you how often you do you get chemo and whether you have other side effects ? I pray for great results for you ❤️
Very sweet from you, my wedding is in Budapest so is not just about the hair but whether I will be in condition to do it, travel and so but guess next days will tell 😢
The days I have both it takes me about 5 days to get over the tiredness. The week I only have gem no affects. I went overseas a month after I started treatment n was tired for about 2 days then I was grand.
Best of luck with your wedding plans. I really think you will be good xx
So sorry you are going through this, life can be so unfair. I really hope you are well enough to get married. Please let us know how you get on. Sending love and hugs back x
You can do this! 💪 x I think it's the carbo/gem mix that's the good option next, I'm sure you'll have a beautiful wedding 👩❤️👨💞don't let this muddy your plans X sending a big welsh Cwtch(hug) Rhian x
Thank you dear Rhian for encouraging message and welsh ctwch ❤️🙏😘. I was looking at my options and am deciding either carbo/gem or caelyx, depending on what my oncologist also says tomorrow. Hope indeed it can take me safely to and through wedding and our happy ever after 🥹
Hello. Just to give you a positive along with a hug. I like you are Brac negative. That’s great for our families but not as good for us as Niraparib and the Parpp family work better if you’re Brac positive. BUT it’s got you 6 months clear and still platinum sensitive when it comes to chemotherapy. I’ve just started chemo for my first recurrence. Lots of love xx
Dear Kamloops, sorry to hear we are in the same shoes I hope it goes well for you and most of all that you see results of destroyed cancer soonest 🙏💪💚 You are right, seems it would be better to have Brac positive as there is more targeted approach. Even though my sister is suffering from breast cancer (and melanoma) - happy family - the gene was not confirmed. We both got it at young age 37-40. Amazing gift from life, now just to figure what to do with it. Well first fight it 😒 !
much love and best wishes for your treatment and thank you for your nice message, big hug back 😘
Oh no really ?? Seems like same story only in our cases first my sis breast cancer came back almost exactly 10 years later and half year later I was diagnosed too I do not know if I am HRD positive ? How did you find out ? Should I find it in my genetic tests ?
You are very calm and I hope this stands you in good stead. Do you have someone with whom you can discuss the various medical options? At the end of the day, you get to decide. Sending you all the encouragement in the world. Take care.
Thank you for nice message, I am indeed calm ( or better numb to depressed) now, but i was raging month ago when I heard it was active again. Felt like personal failure and disappointment to my loved ones but most of all to myself, felt like there is no reason to continue fight or even keep on living. Guess we all have these dark moments and then you start to collect yourself back. Im kinda back but feels my soul left me for now and I really need it back for healing. I will make that decision together with my partner and doctor I guess. But yes responsibility stays with me. Much love, best wishes and vibes to you. 💚😘
Hi. Everyone is different but I would choose carbo and doxil. You don’t lose your hair and it’s every four weeks so you have time to live a fairly normal life. You just have to use a lot of lotion on hands and feet and rinse your mouth frequently with salt water or baking soda in water. I hope everything will be okay for your wedding!
Hi Delia, thank you for a recommendation. You mean Caelyx right? Interesting my oncologist here send me document without carbo but maybe I hear more tomorrow. Sounds as very manageable treatment for as long as it kills the beast 🙏 much love and best wishes 💚
Hi. I've had all three of the cocktails(on the carbo/doxi now) plus Avastin and radiation. One scan was clear and then 3 months later I had small spots on my liver. I have one more treatment and then a scan at the end of august. I was encouraged to choose the one that I had not yet had, so that's why I'm on this one. I wish you all the best with your treatment. I would say always go with your gut when you feel something isn't right. If you don't like what the Dr. is telling you, switch. I had an allergic reaction to the carbo and my reg. onco simply said she didn't like it when she couldn't give her patients the meds they need. I've had carbo as part of all 3 separate occurances. My surgeon works in my town at the regional cancer center and at a University about an hour away. When I reached out to her she offered my an overnight protocol where they administer high levels of steroids followed by a slow infusion of the carbo overnight. Now, I'm able to get the medicine I need.
Dear Healingvibes. Thank you for sharing your story ! You went through loads too hope your result will be 100% NED and will stay like this for good ! Sometimes I am struggling whether it is intuition or overreaction from my side. But after all this is our life right? My oncologist tries to keep me at ease but in this particular case it came across as not taking my concerns seriously And of course I was doubting myself, how come I started to feel symptoms only once I knew it was active? Like literally from that moment on? Is it then psycho or not? What if we did scan only in 2 months ? Would I be more at ease of not knowing and thus not developing the symptoms. No one knows, but is just striking how it happened now Hope right cure is waiting for all of us very soon. Best wishes and much love ❤️
Hi, sorry to hear you are going through this. Did you have a CARIS genetic test? The moleculer profiling can tell which drug may work on you. There is a new drug called ELAHERE (mirvetuximab) which is recently approved by the FDA. Not available in UK or Europe but it can be ordered with special permission or you can go to US to receive it. It is a new drug and very effective. Because it is a targeted drug, side effects are minimal. You may want to talk to your oncologist about it. Wish you all the best and and have a wonderful time at your wedding 💐
Thank you dear for putting it onto my radar ! I asked my oncologist and he was saying indeed that this is not yet approved for the Netherlands and so far the immunotherapy didn’t show great result for ovarian cancer but this could be future option hopefully 🙏 it would be great if there would be new developments coming soon for all of us 🙏💚
you're welcome. my recurrence happened to be on my bowels. I had carbo/doxy(caelyx) /avastin for 6 cycles than continued with avastin. but now my oncologist is switching to this new drug since there are some minimal changes on the bowel. Waiting to receive the drug from US (received a special permission from Ministry of Health, so we can import it without EMEA or local approval). As side effect update from my triple combo; I had lost some of my hair but not all as I did with paclitaxel. But I had severe diarrhea due to caelyx which resulted with a lot of weight loss. I'd choose hair loss over diarrhea if i had known before 😔. Duration of diarrhea increased by each cycle sometime lasting for 10 days making me miserable and no life quality... May be I was affected more because my bowel was shortened because of the operation. Plus Caelyx ruined the gut microbiata... Right now I'm on Gemzar until the Elahere arrives, I'm having similar side effects with Gemzar too; but hoping that I don't get any diarrhea like side effects with Elahere 🙏
Thank you for sharing your experience!! Interestingly my oncologist told me that he can add avastin only with carbo/gem option but not with Caelyx but he would wait w avastin as it could cause bowel perforation. I was quite surprised about it coz had quite hopes for avastin. Could this be also contributing to your diarrhea issues ? Any side effect is sht if is overwhelming 😢 I hope it improves, can’t you get some medicine to handle it ? My sis is suffering from it too as she is on maintained drug for breast cancer and she is getting also support with diarrhea as otherwise she would be constantly in cramps. Wonder why they couldn’t help you then too ? I really wish that the new drug will do magic for you ! Please keep me informed 😘Big hugs 😘💚
I am taking lorepamide to slow down the bowel movements but still difficult to handle. Hope after Elahere once my system is clear from any form of chemo, then it will improve. I’ll update you with my Elahere experience. I also recommend you to get some expert opinion on your case. I was in contact with Prof Jonathan Ledermann in UK and had a zoom consultation with him where he reviewed my case and treatment. He is one of the top experts in ovarian cancer. The other one is in Denmark; Dr Mansoor Raza Mirza. He doesn’t give online consultation, you may have face to face with him. Always good to have a 2nd opinion in our case. All the best, Sibel
So sorry to hear about your recurrence and that it ruined your holiday. I have clear cell so a bit different to you. I had a 2nd op and radiotherapy for first recurrence, then at 2nd recurrence, they want to do a massive 3rd op then chemo BUT they will not give me the same chemo - I will get carbo/caelyx and with this, if I have it, I will not lose my hair again so maybe your oncologist could try this? Just sending all my good wishes and prayers! xx
OMG you are and were also going through something yourself 😢😭 what a heavy disease this is, so unfair 😢. I will indeed start with carbo/caelyx this Thursday already. When is your start ? Wish you also best and big hugs 🙏😘💚
I'm in the US SBRT proton radiation could be an option for the lesion after chemo typically they do 3 treatments, scan and targeted radiation. I'm currently doing Doxil/Carbo for a recurrence not too bad find it easier than frontline carbo/taxol.
Dear Saintgermain , thank you for sharing your story that gives hope as I will start with the same treatment on Thursday already 🙏💚 I am almost ready for it as ascites are again building back in my tummy 😢 best wishes ❤️
I'll be praying for you tip with the Doxil not everyone gets side effects chew ice during your infusion to avoid mouth sores I bought a mouth rinse for mouth sores Oral B rinsed twice a day after the infusion to prevent them just in case. I didn't feel any tingling in my feet or hands as I've only had 1 treatment but bought the booties and mitts with the cold packs if needed so far so good a bit of fatigue afterwards but doable. The carbo should eliminate the ascites pretty quickly. I found the recurrence to be harder to wrap my head around, you've got this!
thank you dear once again for sharing your experience, it helps a million now 💚 yes I absolutely agree. Last year I was in fight mode I thought I can keep it under control if I pay attention. Realizing it all doesn’t matter in the end is quite sobering and puts me quite to a deep place 😢 but we keep on fighting 😘 best wishes also to you with the treatments and I will hunt for some ice on Thursday cheers b
I’m so sorry you are facing a recurrence and although I cannot offer you any advice on which cocktail to take I just wanted to wish you the very best with your wedding next month and hope you are able to keep your hair. My son got married 2 months ago and I know how important it was to me to have my own hair on the day!
Sorry to hear you have a recurrence. It’s good that you were able to get back from your holiday quickly and be helped. At least you can say you didn’t sit about waiting for things to happen and got on with having trips etc even though it didn’t turn out the way you hoped. I wasn’t given any choices last Sept for my treatment. It was just presented as carbo taxol again and if not working, the chemicals would be changed after three sessions, blood test and scan. I was a bit hasty in having the first treatment and not trying the cold cap. In hindsight I might have given that a go on my short hair. The winter nights were cold, that was my only consideration re hair afterwards. Fortunately friend bought me a little bed jacket with a hood. I did try an Oodie oversized night shirt with a hood but woke up feeling nearly strangled one day so that went to a charity shop…. I wish you all the best these coming months.
thank you for your message dear Rosado22 . You are right ! There should be always a glass half full, it is just so difficult to see when it happens. But I will get there. Best wishes to you 😘🙏💚
This disease is horrible. I feel like I am always waiting to get bad news again. BUT, I am a 12 year survivor of this beast. The key is to keep living, keep making plans, spend time with those you love because life is just so short and unpredictable. I worry about scans, belly pain, you name it, I worry. I keep telling myself that I have to focus on living and not dying. Keep fighting. Get married and wear a wig if that’s what will make YOU happy. As long as there are options for treatment, you keep living! God Bless! 🙏
🥹 that is so sweet and encouraging message as I am stepping out from my caelyx/carbo treatment right now. Thank you so much ! So great to hear about 12 years ! You are master ! Thank you for positive mind and spirit ❤️ best wishes ❤️
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Much hugs and love to all of you and thank you for reading me. 
cheers b
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