Peritoneal Stage 4

Hi. I’ve been on Olaparib for two weeks now, with hardly any issues ,other than a couple of days where I felt a bit sicky. But I’ve found I feel better if I eat a few carbs. 
Im BRCA2 positive.

Hi Karen

Thank you;  I have also found that carbohydrates help!  Porridge for breakfast before taking the Olaparib tablets,  a jacket potato for lunch and - why not -  a piece of cake after dinner (Got to have some treats in this unreal world we ae living in!!)

Seriously, I read all about "Starving Cancer " when I was first daignosed a year ago and put myself on a sugar-free diet. ie. no carbohydrates, sugar-free yoghurst.  Most medications make me feel nauseous though (even some of the anti-nausea medications!) and so some carbs are now essential for survival.

I am HRD positive:  Homologous Repair Deficient which, if i have got this correct, means that my cancer cells cannot repair any double stranded breaks in their DNA.  That with the Olaparib inhibiting our PARP body proteins from repairing any single stranded breaks in the DNA mean that, hopefully , we have them on the run!

My chemotherapy treatment comprised three drugs :-  bevacizumab, carboplatin and paclitaxel for 6 sessions.  Now it is just the bevacizumab every three weeks.

I was diagnosed stage 4 and told it was "treatable but not curable".  How about you, Karen?

I am trying hard to be posistive and to "live in the present" but the fatigue, nausea, bone pain and peripheral neuropathy in my feet all conspire to make it hard work at times.

I do hope you are doing well. xxx

just started on oliparab and suffering with nausea all day long. I'll try carbs like you suggested. thanks 

Diagnosed High grade serous stage 3C ovarian cancer in January, i was given a 85% prognosis,of survival. Terrified was an understatement . Due to the size of my tumour I needed four cycles of Paclitaxel and Carboplatin, prior to debulking surgery, after surgery she informed me, it was in fact Primary peritoneal cancer as my ovaries were fine, but the cancer had spread all over my abdomen , and the tumour itself was on my vaginal vault. There was no evidence of disease after surgery, but I still had another three cycles of chemo . I’ve been left with terrible pains in my feet and shoulders, which at times makes it hard work .

I was told Olaparib takes a few weeks to get used to and the nausea does settle down.

As well as carbohydrates, ginger can help. I nibble ginger biscuits and have tried drinking ginger ale, ginger beer ( non-alcoholic!) and a ginger cordial. 

There are anti- nausea tablets you can be prescribed. Has your Oncology Doctor suggested anything?

I tried 3 different ones but found Cyclizine was the most effective for me. One did not work for me and  Ondanestron made me very constipated!

I take the Cyclizine "as and when" I need it ( up to 3 a day I think but I have only used one).

Do discuss this with your Doctor.

Hope you get through this stage soon, Karen xx

I share your fears, Karen.

I was diagnosed with high grade peritoneal cancer stage 4b last November. The cancer had spread  all over the place-  lymph glands, pleural cavity, ovaries, a lesion in the liver etc - so debulking surgery was not suggested.

I had 6 cycles of chemotherapy ( carboplatin, paclitaxel and bevacizumab) and CT scans with dye showed that the treatment caused reductions in the cancer sites which was great news.

In March I started three weekly bevacizumab only infusions and in April daily Olaparib tablets were added.

This is my Maintenance Treatment. The aim is to keep the cancer at bay and maintain a stable situation. It is "treatable but not curable" and that is what I am trying to learn to live with.

The chemotherapy left me with neuropathy ( numbness, pins and needles) in both feet. You sound as if you are in real pain which is not good.

I have experienced some bone pain in my hips and physiotherapy was suggested.

I have been doing "pilates-type" exercises daily since July and this has helped my hips.

I just could not do the exercises twice a day as the physio suggested, however, as I just get too tired by late afternoon.

Fatigue and sometimes nausea ( when I overdo stuff - everything, physical, mental and emotional can cause fatigue) are other side effects.

"Brain fog" is still hanging around! I thought  ( naively!) 7 months after finishing the chemotherapy that "everything would be back to normal" . It isn't and it can take months to get through theses side effects!

I am sure we can do that, Karen.

Olaparib is a relatively new drug to target cancer and it has very good results.

Let's both be among those positive statistics!

Love xxx

Thought I’d reply to you all as in pretty much the same situation although we all have different symptoms depending on where the cancer is. 
I started on 3 different chemo infusions Carboplatin, Liposomal Doxorubicin and Befacizumab and had 6 sessions. After a few weeks rest and scans I was given Olarapib tablets but they caused my to have high blood pressure so they have taken me off and now back on Doxorubicin (although I was told the cancer knows when you have taken something previously). 
fortunately my neuropathy (tingling in toes) has now gone away but brain fog (especially road rage and forgetfulness) still evident.

new cancer nodules have appeared in the body and caused some blockage to my kidneys and now have one stent and for the time being a nephrostomy bag in one kidney but hoping they can put a stent in the other side.

for me, I feel lucky to have options at this stage although I’m brave enough to know that it won’t go away. The fatigue is hard to live with and will consider doing some light exercise in the next few weeks, it’s so good to have others who are going through something similar. Thanks for your messages

jules

Hi Jules, yes it does help to know you are not alone, that there are others sharing this scary and uncertain journey with you .

We are all the same and yet different - slightly different cancer sites, different treatments and different reactions to those treatments. Thank goodness there are Oncologists who are able to help us as individuals. 

I have been told "treatable but not curable" and although it takes some getting used to, it is correct. Even people who are in ” remission" still worry day to day that the cancer might return. 

"Do not spoil today by worrying about tomorrow ” I have been told, and I rather liked that!!

Let us all be positive and think about all the positive statistics we are going to be part of!

Love to all

Xxxxx

hi Karen

Just wondered how you are getting on now. Hope there have been some improvements for you. 

I have always been positive about my PPC stage 4B diagnosis nearly 5 years ago, despite several autoimmune complications resulting from chemotherapy, but now am anxious about recurrence after my new oncologist told me that “my body would tell me” if this happened. Anyone experienced this?