Meeting with oncologist on Wednesday for results of CT last Monday. Previous scan (January) very confusing so convinced Niraparib not working for me. Don't know if there are any more options after this. Not sure aif my body could handle another course of chemo even if offered.
Husband brilliant but I think a bit head in the sand.
I do want to keep fighting but am exhausted after three years of this.
Waiting for results is horrible. I am also waiting because they lost the scan last week. It has given me a chance to think about possible options though. We often talk on this forum about 'keeping fighting', and for lots of people that is their way. I think there is also a place for acceptance that the end will come, and the drugs will be harsher as time goes on.
I have had three years of feeling unwell - not desperately ill, just unable to function as a normal person. I think I have decided that if the scan show progression, or if my current lack of balance is caused by brain mets, I shall question very hard about possible effects of further treatment.
I acknowledge that at my age I have less to look forward to than younger people. If I had young children I would be trying as hard as I could to stay with them.
I hope your appointment goes better than you expect.
I have posted a profile and as you will see, like yourself it has not been an easy three years. Because of this I have been unable to spend as much time with our grandchildren as I would like and this has been sooo hard.
Our youngest grandchild was born the day I should have finished first 6 rounds of chemo but because of various delays due to bloods etc it was still ongoing.
My daughter-in-law is a nurse in a hospice, and my daughter a radiographer. They are both aware of what is going on, but I tend to keep them at arms length so as to not upset them. My husband is still convinced most symptoms are the result of drugs but I am not so sure.
Good luck with your scan and whatever you decide. Will be thinking of you.
So sorry. I can understand. Three years is a very long battle. I think you have a reason to be tired. Wish I could help. Lost a friend today to cancer and I understand how it feels trying to keep your head up during the challenge times. Hugs and prayers.
I agree with all the advice the others have given, and a second opinion is a good idea but only if you decide you want to continue the fight xx.
One thing i would add is the niraparib ‘fog’ that i feel exists (in my case anyway 😬) i got very down on it at first and couldnt work out which were my real feelings i had a 2 week holiday off the drug and the real me came back! I continue on them at the lowest dose and have learned to live with them, but if you have progression then stop them and wait 2 weeks before you make any major decisions then you know its your mind and not the drugs affecting you xxx
I read all the research on them and they take 8 weeks to get out of the body this can be why the side effects get gradually worse as it builds up in the system.
Know exactly how you feel Janwen52 - have take Niraparib for 9 months and it has stopped working. However, despite the fact I will be doing Carbo and Taxol which made me so ill the first time round - it did give me four years - I have decided to go for it in the hope that I can manage it better this time round. Start on Thursday wish me luck and I wish you all the very best with whatever you decide to do. A big hug. Anne
Keep fighting and good luck with the scan will be thinking of you
Hi Janet,
Like you i’m coming up to three years and understand a little of how you feel. In January I felt shocking and wasn’t sure I could face more treatment in the main due to side effects of AVASTIN.
I decided to stop taking AVASTIN mid January and can not believe the difference in how I feel now. I’m not dancing on tables but i’m so much better than I was and believe having a gap in treatment is allowing me to build my strength for the next lot of chemo.
Only you can decide what is right for you. Continuous treatment works for some but it didn’t for me I found it too exhausting.
Hi Janet, I had carbo/taxol and then Avastin which was stopped in mid-January as I showed progression on my December scan. I felt really bad and couldn't decide whether I should have the next chemo or not. The lovely people on this site gave me some very helpful advice and the ammunition to discuss in more detail at the clinic. It's on hold at the moment as the next two scans showed no further change. Next scan tomorrow and clinic next week. The consultant said it is down to how I feel (emotionally and painwise) rather than CA125 score or scan.
Like Lisa, I feel a lot better and brain-fog has reduced since stopping Avastin so I feel more able to cope with decision-making. I simply couldn't face going straight from Avastin back to chemo.
Incidentally, I have been getting more bloated even though they say no progression since December.
The Avastin was do-able compared to chemo and worked for eight months. I was offered it to slow things. I always knew I would have to look at whether I had more chemo or not. Avastin gave me an extra eight months without chemo. I had carbo/taxol, which was frankly, awful. My cancer has never gone away - it's scattered around the peritoneal wall amongst other places - so the best I was going to get was no progression for a while. Like I said, coming off the Avastin has made me feel better enough to think more clearly about what I do next. It's more likely now that I will go for carbo/caelyx when it is next offered.
What I did get concerned about was the differences of opinion amongst the doctors in the same clinic. Once I had finally got to see the consultant and discuss it (and it was a discussion rather than them telling me what to do) I felt a lot more in control.
I've had monthly scans since December which show no change since then and I have another one this week with a follow-up appointment the week after.
I have asked about the bloating several times but they don't seem worried about it. We will see next week.
This isn't the only health problem I have to deal with. Frankly, there is going to come a point where I have to look at quality of life.
I've just re-read my post and I apologise if it comes over as snappy. It's not meant to be. My colleagues used to complain I was terse and could have been a little more, shall we say, gentle or subtle. Sorry.
Have hope in your heart and hang in there... results will come and then I always say to myself the old well used words “ a day st a time” You May feel differently once you start to feel a little stronger or they may have something you can try without such harsh effects - whatever happens am sending love and courage 🙏💕
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