Update and Concern

[Rlenesue]

Hi to all of you lovely ladies! I haven't posted in quite sometime and I am still in remission and still taking cancer maintenance drug niraparib for 2 yrs now. I'm brca1 positive so this parp inhibitor is working well. I had my 3 month oncology appointment and asked her if i could remove my port. She said no because there is a high chance that the cancer will come back even with the niraparib. I made an appointment to get it removed anyway. My question is have any of you ladies had your cancer return with the parp inhibitor?

[Katmal-UK]

Hi, sound like you are doing well. I've been on a parp for 7 years (BRAC2) but I am aware of ladies on a parp that it hasn't worked for tho those tend not to be BRAC positive. I hope your parp continues to work well for you. Happy Christmas! x Kathy .

[Rlenesue in reply to Katmal-UK]

Thanks, Katmal! I was hoping you would respond because I knew you had been on it...

[Rlenesue in reply to Rlenesue]

I'm brca1 positive myself and it's working well. I just don't know why my doctor thinks I'll get cancer again. 😉

[Katmal-UK in reply to Rlenesue]

I just think some drs approach things differently. My first onc used to say things like that along with my trial nurse who out of the blue said 'the cancer will come back and will shorten your life'. I swopped drs and my new onc said why would ppl say that, we dont know anything for sure. She wasnt giving me false hope, she gave me hope. I was told right at the beginning I had a couple of years...... still here despite 2 recurrences, 13years and counting. xx

[Lyndy]

I am with you... any foreign body inserted into you is a reminder of what you’ve been through and a potential source of infection. Get rid... I say. You might not ever relapse and if you do it can be refitted. xx

[Rlenesue in reply to Lyndy]

Thank you, Lyndy... this is exactly what I was thinking.

[purfekt10]

I was diagnosed in 2018, went through chemo, and had my port removed in 2019. My CA 125 is currently 5.

[Cheryl4677]

I had my port fitted in 2017 and it has remained in since. I have had a mastectomy and it is advised I don’t use my left arm for blood tests and blood pressure unless in an emergency. Given the struggles to find veins for blood tests, CT scans and transfusions I have needed, I am very pleased it’s still there. In general phlebotomy service cannot access ports so I have to attend the hospital as they have the correct needle and expertise. Ok it’s a bit obvious and can get a bit tender but it’s a small price to pay. I was advised to keep it by my oncologist who rightly suggested that my cancer would and has returned. Currently on my 3rd different chemo regimen. Awaiting my next CT in the new year. I recurred whilst on olaparib and cedaranib.It’s obviously your choice and this is an unpredictable disease. Good luck and hope you have a long remission. Best wishes for 2021. Cheryl x

[Pianoplayer731021 in reply to Cheryl4677]

Hi Cheryl, did you call yourself fendweller and had a picture of yourself before? I’m a little confused if you just changed your picture and just went by Cheryl. Just wondering if you are the same person that has a birthday in November. Donna

[Wasginger090658]

Good morning to you, yes I was given Niraparib and I am BRCA 2 positive. I had Niraparib after completing second line chemotherapy and sadly it didn't work for me, I am now two treatments away from completing third line chemotherapy and I have no doubt at all that it won't be the last time I have to have treatment.Only you can decide what is right for you but for me I do everything that is asked of me and I am meticulous in how I care for myself. I am determined to hold back the cancer by whatever means I have to. Good luck to you, I hope that your remission is forever. Happy Christmas stay safe. X

[delia2]

Hi. You should follow your own feelings about the port but the reason your doctor said that is that in many cases the cancer becomes resistant to the PARP after a year or two or three. There are people like Katmal for whom it works very long term, maybe forever, and you may be one of those people—or you may not. It seems to work a very long time for BRCA positive people after frontline. I hope you stay in remission forever!