I have not posted anything yet but have been following the posts for several months and learned a lot from them.
I was diagnosed with with ovarian cancer stage 4B (high grade serous, BRCA negative ) in October 2019. Had the standard treatment: six cycles of carboplatin/paclitaxel chemo and debunking surgery. Was declared NED in May 2020. Started Zejula 200 in July 2020. The dose was later reduced to 100 because of side effects. Was feeling bloated and short of breath in December 2020, had CA 125 test (the number doubled). CT scan on January 6 2021 showed fluid accumulation under my lungs and in the abdomen. Some of the fluid was removed on January 7, namely 1 liter from under my left lung. There are smaller amount of fluid in my abdomen and under my right lung. Will be seeing my oncologist on Wednesday to discuss the scan results, analysis of the removed fluid and future treatments.
I would appreciate hearing from other women, who have been in a similar situation, how they dealt with it. I am 77 years old and live in the US.
Worried and scared.
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Marienka
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No advice for you Marienka as I haven’t actually managed to get on a Parp inhibitor yet! Just sending you positive vibes and hoping for better times ahead xx
Hi Marienka,your going through a very tough time physically and emotionally.Having fluid restrict your breathing is a horrible sensation ,I had that which caused dizziness also.Im on a parp inhibitor for 5 years and have had 2 surgeries in that time.Certain Chemo treatments can remove fluid build up so maybe your Oncologist will suggest that.Try not to worry,it's out of your hands and in the hands of the specialist who will know the best thing to do.take care xx
Hi Marienka, I was diagnosed for exactly the same as you in Oct. 2019. I had chemo cycles, debulking surgery, and more chemo. I was NED in May also. Then I started on 200 mgs. with side effects and had to have a blood transfusion. They lowered my dose to 100 mgs. after taking a week off. My ct scan in November was good. I don’t know how long this drug will be all right for me. My blood work was ok last week, but I still have some side effects. So far, this hasn’t spread to my lungs or somewhere else. Sorry that you are having fluid problems. My abdomen feels achey lately and my neuropathy in my feet feels strange. It looks like you started your journey just at the same time as me. I was stage 4 and BRCA negative also. I also live in the U.S. and I am 74 years old. I’ll be thinking of you that your drs. will find the correct treatment. Hugs, Donna
What state do you live in the US ? I’m from Michigan and it gets cold here. You can feel down with shorter and darker days in the winter. I take a medicine for mild depression and medicine to sleep at night. This niraparib can cause insomnia and muscle and joint pain. I’m glad they lowered my dose, but it still can give you side effects. This comment is in the wrong place. This is suppose to go to Marienka.
Hi Donna,Our situations are indeed very similar and I am glad that Niraparib worked for you better than for me. Maybe the Avastin I will be taking in addition to Zejula will put me back into NED. I live in Pennsylvania.
Hi, Zejula is the brand name for niraparib. I never took Avastin. I’ll have to look it up. Sorry that you have fluid issues under your lungs and abdomen. In the beginning, I had mild ascites in my abdomen. Haven’t had a problem with that. I had 6 UTI’s in the beginning of this treatment and dehydration. I’m going through another one right now, but it’s been awhile. I hope that this Zejula or ( niraparib) will keep those cancer cells at bay at least for awhile. Time will tell, but I get worried too when it’s time for a blood test or a ct scan. Take care, my friend in Pennsylvania. 🇺🇸🥰
Sorry Marienka. Hugs* I am 46 years old, was diagnosed with stage two ovarian cancer carcinoma at age 43 February 2018. My diagnosis changed almost immediately as I started first line treatment. It went from stage to two stage four within a couple of short weeks. I could be you in the worried and scared department. It's not easy living life happily and then just turning it on its head under your heels thinking about how not far along ago it was you were living a normal life. I was on a couple different treatments after that, but only one of them was effective and remained mostly effective till about February of last year. (2020- feels weird that 20/20 is now in the past, it took so long to get through!)I continued treatments and hopes of delaying inevitable till about July and I stopped teaching so now it is January of 2021. I too am dealing with fluid on the lungs and lung sac and stomach. I am learning that ascites is not fun at all!
Hello MarienkaI follow this forum but dont post very often but just feel I need to share my experience with you. I was diagnosed with Grade 4 OC which had metatistised to my peritoneum and like you I had carboplatin/paclitaxel x 3 then debulking surgery followed by another 3 sessions of chemotherapy. I had a great result and 15 months remission. Recurrence of the disease was treated with carboplatin/caelyx for 6 sessions which was again successful and I was able to start on Niraparib. Sadly it didn't stop recurrence for a third time and I am just about to have number 6 of 6 in this course, I am BRCA2 positive by the way, the side effects from Niraparib for me were very minimal it is sad that it didn't work for me.
What I would say Marienka is that you mustn't lose faith, always believe that you can carry on and cope with the treatment, you like me have to dig deep, for as long as there is treatment we are here to talk about it. Good luck to you Marienka. X
Thanks for sharing your story with me. Being in remission for 16 months was wonderful. I only had 6 moths remission and now I am hoping that the Avastin infusion, which I will be getting every 3 weeks, will do the trick. Marienka
Look forward Marienka, not back. That was then and this is now and as the other ladies are saying there are lots of options for treatment open to all of us, I wont give up until I have tried all of them and even then my resolve and determination wont desert me. Good luck to you. Xx
Suggest researching clinical trials and don’t hesitate to get a second, or even third, opinion if necessary. Having a plan to fall back on really helps.
Hi. Am 77 also american in france. They may recommend taxol which is effective hang in there its a crappy diagnosis but there are a lot of options for treatment
Hi. I just want to send positive vibes. If they put you on carbo and doxil aka caelyx it's not too bad--nothing like frontline. Good luck. There are still plenty of options for you. xx
Did they treat you with AVASTIN as well? Usually you have 22 cycles of that to prolong reoccurring. Try to stay positive make a list of questions on paper (so you don’t forget any it seems if I don’t write them down I forget to ask) trials ,different chemotherapy, etc. I believe some of the webinars put out by Sloan Kettering? From healthunlocked might be helpful?Let us know how you are doing and what they will do for you
Hello Marienka, A similar thing happened to me. Niraparib after a second recurrence but my platelets dropped to 9 after a few weeks and I was admitted to hospital for 3 days to bring them back up to almost normal again. Taken off Niraparib and started Rucaparib within a short time. Less side effects but after 4/5 months my CA 125 had risen and a CT scan showed 3 more tumours which had spread to my liver. The so back on chemotherapy -Taxol. I’ve had 10 infusions of Taxol and my CA 125 has dropped from 110 to 11. I haven’t had a CY scan yet but I’m hoping the tumours will have shrunk somewhat. I’ve asked about being put on another Parp but the oncologist says if one doesn’t work neither will any others. I was 77 in December but still hoping for a little more time. Perhaps more than a little so I feel sure your oncologist will find something that’ll suit you and get you back to NED. I’ve never been NED in almost three years so I’m hoping Taxol will do the trick. Good luck on Wednesday and keep in touch.. love from Angela x
Hello Angela,Thank you for sharing your story! It is encouraging to hear that there are so many ways we can fight this disease, so I am hopeful that some will for me at least for a while. Marienka
I want to thank all of you for your words of encouragement, support and for your helpful comments. It is comforting to know that I am not alone in this struggle.I saw my oncologist on Wednesday. He confirmed that I have a recurrence. Cancer cells were found in the fluid that was removed. He is putting me on Avastin infusion every three weeks, while I continue taking 100 MGs of Niraparib. I will have a scan in 3 moths and hopefully Avastin will help with preventing cancer cells from growing again. He was somewhat optimistic about the Avastin treatment and I am much calmer about my prospects. I know from your email that it works for some women but not for everybody.
I just read that you know that Zejula is the brand name. I just looked up Avastin, because I never heard of it before. Very interesting. Hope things go good for you, Donna
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