ovarian cancer - access to PARP inhibitors

Hi

I hope your mum is managing her news it sometimes takes a while for it all to fully sink in to appreciate and choose which treatments would be best for individual needs and recovery. 

I hope this is of some help, I realise your mum's circumstances are very different but I can't have surgery and am on PARP inhibitors and hopefully may be someone who has closer medical circumstances with a more useful response. 

I am stage IVb, they tried to operate but unfortunately due to scaring from a previous kidney removal surgery they had to abort mid debulking and the only option for me was chemo. I would have loved the option of surgery as it gives the best outcome for survival and NED, however I realise we all have different medical experiences and needs.

They couldn't offer me PARP inhibitors until after I had completed chemo AND there was proof the tumours had shrunk.  (At the half way scan they hadn't)  but the news was good at the end of chemo showing shrinkage. PARP has to start within 6 weeks of chemo finishing so they have a tight timeline. I do not have the BRAC gene so there is a limited option of PARP inhibitors but I have recently started on Naraparib 200mg. I think as my treatment is palliative the results of my chemo had to go via the MDT group before funding/ approval to issue PARP was granted. This treatment is costly thank goodness for the NHS!  At the moment I am coping on Naraparib with its toxicity and side effects. long may that last, doing well and everyday is a gift.  

My thoughts are with you and your mum at the start of your journey, everything is doable you both will find strengths you didn't know you had and will have the support of the group as needed. 

Best Wishes

Xena

Hi, so sorry to hear about your mum’s diagnosis. I’m BRCA 2 , stage 3 HGS ovarian cancer. I started taking the PARP inhibitor Olaparid following chemotherapy and will be taking this medication for 2 years.(started September 24) my understanding is that it’s prescribed following a good response to platinum based chemo carboplatin. I know this is such a scary time and waiting for treatment plan is the hardest . I had chemo before and after surgery before moving onto maintenance and currently doing really well on PARP. Best wishes xx

How was chemo? Level of energy, able to get around the house, side effects etc.?

I will be there for my mum the whole way, but reading the paperwork on Paclitaxel and Carboplatin drugs today, brings a bit of worry.

Thanks.

Hi Xena,

We were not convinced of the real benefit of debulking. Literature suggests it is not really curative, more for staging. So do not be down on Chemo+PARP only.

• Hi I was really anxious about chemotherapy, the list of side effects are scary, but we are all different and I don’t think we experience them all. Initially the plan was for me to have carboplatin and Paclitaxel, but due to an allergic reaction to Paclitaxel I carried on with carboplatin on its own. I found the side effects were way more manageable than I anticipated. A few days after chemo I felt nauseous and drained for about 4 days then ok again. I was still able to do most things just at a slower pace. 
  The chemo did its job, shrunk the tumours enough so I could have surgery. I had my diagnosis from biopsies taken during a laparoscopic procedure so knew before full debulking the subtype and stage of my cancer. The surgery was tough and not without its complications but I’m pleased I had it. All the visible cancer was removed. At stage 3 I know it’s about managing the OC not curing it and the olaparid tablets help to delay recurrence. I am currently feeling really well and NED . there are charities, ovacome and target ovarian cancer that specialise in OC , their websites have lots of information about treatment and both have help line number, target ov has nurses that you can call to check out anything that’s on your mind, and there is always here. There are many treatment options. Take care and best wishes to you mum . Xx
  
  

Hi. I'm stage 3c high grade serous ovarian cancer. This was confirmed after full hysterectomy and all the other gynae bits. I finished chemo 4 weeks ago (carboplatin and Paclitaxel). Generally, apart from the hair loss, I had very few problems with it. A bit of tiredness and for a couple of days after the last 3 treatments I lost my sense of taste.

I am due to start on PARP niraparib in 2 weeks time. Whilst they were generally pleased with the outcome of the chemo, I still have a small amount of disease showing on the scan, so hopefully it will be held at bay by the PARP.

I am sure your Mum will come through it all fine. It's hard at first but having a positive mental attitude works wonders. 

Hi Janac52

I have 4b high grade serous ovarian cancer and completed 6 sessions of carboplatin and Paclitaxel.  I am just three weeks into Niraparib so far no terrible side effects.  Frankly at present a breeze compared to chemo. I try to get out for a walk most days and taking each day as it comes.

Once I got my treatment plan my positive  mental attitude kicked in even on the bad days (when they aborted the Op and told me therefore only palliative treatment) I got my head round it I and decided to fight on.

I think the waiting on results and decisions give the most anxiety, enlightened penguin's mum needs to agree a plan she is confident in and then move forward.  Like you I am sure she will come through it with success.

Best wishes for the next stage of your journey.

Hi Xena XP

Thanks for the reply. 

That is reassuring re the nariparib. When I was looking at the list of side effects, I was getting steadily more stressed. 

You are obviously worse off than me in terms of disease. So if you can do it, I can too!

Best wishes, J