I saw my oncologist today. The little bugger is active again, CA125 is 247. Ascites in abdomen. Niraparib hasn't worked. That's the bad ish news. Good news is that I'm going on to caelyx 6 cycles and we have a plan. It's been caught before it marches on too. Thanks for all the messages. I'm going to keep fighting this thing, like all of you.
Results today: I saw my oncologist today. The... - My Ovacome
Sorry to hear that ritabon but you have your big knickers pulled on by the sound of it…I am sure you will kick it into touch xx
So sorry to hear that. May I ask how long you have been on the Niraparib. I have just started on it Good luckx
That’s bad luck Ritabon. Stay 💪🏻 strong. You can do this. X
Sorry to hear Nirabarib didn’t work. It seems to work for some and not others. I am also one of the others and am back on chemo. Hopefully both our new treatments are better.
Sorry to read that niraparib has not worked for you. Pleased to hear that you have a plan for chemo,,so I hope this goes well for you.I had my CA125 result Monday & it has risen to 114,so I am guessing mine is back to!! I am on rucaparib. Yesterday I had a CT scan,but have to wait until the 30th when I see the Oncologist.
I am thinking of you. Its the damned waiting that gets me but now I know, something of relief. You ladies are warriors on here.xx
Thank you for your reply only 4 months very disappointing. I have been on it 2. Just started round 3. Started this after 6 caelyx and carboplatin abdomen swelling putting on weight and this week back on the morphine at night. I hoped this might work for a year but it looks like in October I will be in the same place as last October waiting for scan and chemo. Scan not due till December so she may make me wait till then she did last year but that may have been due to covid. Good luck keep in touch the fight goes on just a new battle. Take carex
Sorry to hear this, but at least you have a plan in action. Best of luck xx
I too was on Niraparib and it stopped work! My ca125 had gone up to 125. I’ve just been on 6 cycles of caelyx & carboplatin and it’s now dropped to 10. I finished the chemo yesterday so am now waiting for my scan. I’ll now be in remission so I’ve kicked the little demon into touch for a while. You too can do this .. keep fighting my friend. Lots of love xx
I'm in the same boat , Rucaparib didn't work for me ,was on it for four months , I've had a six week break ,see oncologist next Tuesday ,then it will be caelyx and Carboplatin , now feeling bloated and very tired , despondent to say the least ,I here caelyx has had good results ,so wishing you well.
Sorry to hear about your recurrence, it's a blow I know from experience but you have a plan which is good. I wish you nothing but the best. Do keep us updated. Big virtual hug xx Kathy xx
Keep fighting ritabon - we're all right beside you and sending love and strength. Annie xx
I'm am happy for you and your determination to fight. I'm fighting this horrible disease too. I'm determined this cancer needs to be gone. I had neoadjuvant Chemo, supracervical hysterectomy from January till now with excellent response. Went to see the surgeon last week and he biopsies the cervix because of a left over lesion he didn't like the looks of. I have serous grade III now grade IV endometrial uterus CA.
The plan is to radiate the cervix if the biopsy comes back positive for tumor.
I'm hoping for a negative result but who knows?
No distant spread. I'm in good health otherwise. Would love to hear the words " remission" instead of "treatment" or plan.
Just continue to fight...
Good luck with your battle.You are in my prayers. Sending good vibes from across the pond
👍. I'm in California USA.
Hi Rita, I’m so sorry to hear that the niraparib is not working . I’m on it too , -brca neg and don’t have the HRD deficiency . I know it’s hard facing chemo again. I’ve had 2 recurrences- its such a shock , though it’s good to have options . Would surgery be an option at all? Is this your first recurrence?
Best of luck with the caelyx . Stay strong ,
Hi there. I recurred in 2020 after 10 years. They are calling it 'active' this time as there is no evidence of increased disease ie scan fine. No surgery at present. I'm not looking forward to chemo but apparently caelyx not as harsh as taxol! Thanks for your message. Xx
I’m sure it was such a shock after 10 years in remission- do you have the brca gene if you don’t mind me asking . I had caelyx and carboplatin last time. The first week post infusion was tough but after that i was fine for 3 weeks. It’s great that your scan is clear . That’s a positive. Hopefully the caelyx will target any cellular activity . Best of luck ,D
No I'm BRCA negative xx
This bloody needs to be gone out of all our lives .As you said , you have the results , and a plan in place with your team . Can they try lynparza instead of the niraparib., once they have it under control . You are strong , give it all the fight you have and stay strong .
We all all pulling for you !!!
Best wishes from
Gill ,Mookie Fox 1234
Hi, Niraparib did not work for me either. I took 100mg for 7 months. I got reoccurrence in July, had 2 treatments of carbo/caelyx. My 125 went up after first treatment, I do not know how it is after second treatment. I am allways worried about my children. I want to see them settled in their life.
Thank you for your reply to ritabon’s post. I’m really sorry to hear you are feeling so worried. We are here to support you so please don’t hesitate to call our support line on 0800 008 7054. We are happy to talk through whatever is on your mind.
I’m so sorry to hear your news. But it sounds like you’re really determined dnd that they’ve got a plan. Much much love, Nicky XX
That's so kind Nicky xxx
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