what is maintenance treatment?

[ZPW411]

Hi … first ever post so here goes … I was diagnosed with ovarian cancer 1st June this year, I’ve had surgery (full hysterectomy) and am now just about to have my third cycle of chemotherapy. I need six …

My oncologist has told me that I will need maintenance treatment for the rest of my life! Not sure what this is … I’m assuming it’s medication to prevent cancer returning. My cancer is graded at stage 3B. Has anyone been in this or a similar position? Thanks x

[Lyndy2]

Hello and welcome! You are having first line treatment ( surgery known as debulking and chemo). Because ovarian cancer is a devil for coming back they tend to put patients on drugs to prevent the cancer returning which is known as ‘maintenance’ treatment, easier than chemo and may be carried on for months or years but generally not forever. Examples of maintenance treatments are Avastin and Parp inhibitors like Olaparib.

I would suggest you ask your nurse specialist or maybe the Ovacome helpline to go through what’s being suggested for you and get a list of questions together for your oncologist. You might start with what is the drug you want to give me and what will it do?

There are other things to consider such as whether or not you have a genetic fault such as BRCA 1or2?

Taking more drugs after chemo sounds like the last thing you might want but try to keep an open mind, you may find that they are very easy and don’t affect you much at all but there’s always a risk of side effects..we are all different. Good luck with your remaining chemos and hope you find some answers here xx

[ZPW411 in reply to Lyndy2]

thank you x my tumour has shown it’s unlikely I have the BRCA Gene thank goodness x

[Saintgermain]

Hello,

I am 3B low grade Endometroid, debulking April, 2021, genetic testing all negative 6 Carbo/Taxol, NED as of October, 2021 NED my tumor was estrogen positive my Gyno/Onc suggested I go on an estrogen blocker for the first 2 years I tried 2 different ones, I didn’t like the side effects plus I have degenerative arthritis which was a concern because they affect your bones but there are people that have no side effects. There’s a lot of promising data that they do indeed have a positive effect on recurrence. I’m a little confused regarding the response “The rest of your life” Have you had genetic testing done? BRCA? What was your CA125 if I may ask.

[delia2]

Hi. I am also stage 3b high grade. It is important to get genomic testing on your tumor. I am not BRCA positive but my tumor is. Many people go on a PARP inhibitor after frontline chemo for two years and then go off it. I’m on Olaparib for maintenance after recurrence so I agave to stay on it indefinitely. You might want to get a second opinion. Xx

[Differentforgirls]

Sorry to hear about your diagnosis.

I’m hoping my story will help you in some way. I too was diagnosed with stage 3b ovarian cancer ( epithelial high grade serous) in Feb 2018. I also had the full debulking surgery followed by 6 cycles of carbo /taxol chemo combination. Over four years ago they didn’t prescribe a maintenance drug after frontline chemo but belueve it’s pretty much the norm these days.

I had more surgery in Jan 2020 followed by 6 cycles of carbo only ( grateful not to have lost my hair that time). After which they put me on a maintenance drug - Niraparib /. Zejula which is a PARP inhibitor. I am BRCA negative.

I have been taking Niraparib every day ( more or less) for over 2 years now. I understand I can carry on taking it for as long as it still works for me. So far, it still is.

I’m hoping my story will help give you hope. Life is like a rollercoaster ride & having a cancer diagnosis of any stage or type feels like the biggest rollercoaster ever. Keep holding on tight - you’ll get through this.

Try to take one day at a time.

All the best with love Lynne xx

[Pianoplayer731021 in reply to Differentforgirls]

Hi Lynne, my story is about the same as yours. I have been on Niraparib for a little over two years also. I am also BRCA negative. I’ve had a few bumps along the way and just resume my medication after stopping for a short time. Just enough to build my blood up again. My nurse said that sometimes they don’t like to keep a person on this for too long. Something was said about three years limit. Just hoping that I will stay alright on this for awhile longer. Wishing you the best with your niraparib journey, Donna xx

[Kaitlinsmum]

Yes, me too! PARP inhibitors are drugs which kill off cancer cells (thats how i understand it!). I take Niraparib. There are side effects but everyone is different. My GP helps me deal with effects. I have gone back to work but can only manage 2 days.

See you health team. Ask questions and make notes. Take someone with you cos it is hard to take in information .

Good luck. Keep posting here xx

Claire