Moving from Chemo to Niraparib

Hi Rolled in glitter

I have stage 3c ovarian and grade 3 peritoneal and bowel obstruction.

Like you I had carbo and taxol followed by the full surgery and 3 more cycles of chemo. I am diagnosed with HRD and started Niraparib 300mg after the last chemo. I too have side effects including neuropathy in my fingers and toes. In fact I could tick all the side effects on the sheet they give you for monitoring. 

The dose was reduced to 200mg and I'm managing at that level. I only have some tingling now and it's gotten better over time.

I have just finished my 4th year of treatment with Niraparib and at a consultation yesterday I've got the go ahead to continue into my 5th year. I believe Niraparib is saving my life. In fact as the years go by I feel even better. I know just how lucky I am to reach the end of the 4th year as so many fabulous brave ladies don't. 

Initially I was very breathless and developed red sores on my feet. Some oedema especially in my left leg.  I ached all over. Was often very fatigued and had and still have episodes of insomnia, taste changes and food wasn't enjoyable.  I had all the usual issues associated with this treatment. They all improved on the lower dose and Indeed did get  easier. After all of this time I do still  have episodes of neuralgia, dry skin on my feet  and sometimes a rash, I get ulcers in my mouth, dry lips and dry nose. Still get breathless but not as much as when I started. There are remedies to help with all of these. 

I really hope you give it a go and it works for you like it is for me. See how you are doing and manage those effects and if necessary discuss the dose with your oncologist. 

Good luck. I'm happy to keep in touch should you ever want to talk. 

Hello

I too was diagnosed with 3b serous High grade Ovarian carcinoma in 2021 diagnosed accidentally after my Gp requested  I had a scan done as I was having some issues  with urinary  problem.  I had no other problems. It's only on scan that my cancer was diagnosed.  I had full  surgery  with with  full hysterectomy, appendisectomy.   removal of ovantom ,peritonium and a temporary  stoma which was reversed  after 3 months. 

I too had 6 rounds of chemotherapy with Carboplantin and Paclitaxel. I too felt horrible after each session  and started  getting  neuropathy  in fingers and toes. Dosage  of Paclitaxel was reduced  but didn't  help much.After course of chemotherapy  was finished I too was started on Niraparib but started  feeling rotten again. I perceived and took it for 3 maths and I then I asked my oncologist  if I could  stop neuroparib for couple of weeks  as I was going  abroad for a family  wedding.  I suddenly  felt so much better but on return  I restarted  niraparib again  but started  feeling  horrible  again so after discussing  with my oncologist  I discontinued  niraparib.

• My neuropathy  is still bugging  me for Which I take Gabapentin daily and learning  to live with tingling  in my toes and fingers but  otherwise I feel a lot better. It is now nearly 5 hrs ago.  Ca 125 normal .   

By the way my Braca gene was negative. Just thanking all mighty I am still  here.

Nal

I'm so pleased that you are well and long may that continue. The chemo and surgery really worked for you. Keep well and keep strong and positive. X

Hello Roselea,

Be positive & go with your gut feeling. Not everybody would get the same side effects. Give it a try and see how u respond with Niraparib . Atleast u got through  chemotherapy .          Wish u all the best. Keep us posted with how u get on.x

Hey lovelies! 

thank you so much for taking the time to reply to my post.

I’ve been on it now for just short of a week and I can feel the side effects creeping in.

i think my husband is expecting me to bounce back after chemo, he found it very difficult watching me go through it.

This morning I’m going for my first round of bloods to see how I’m dealing with it.

My experience of treatment was pretty horrific, it felt like I was being singled out with mishaps, honestly sometimes I felt like I was on a practical joke fly on the wall thing!

Based on your replies, I think it’s pretty standard that Carbo & Taxel are rotten and leaves us with long term damage and I guess life changing symptoms. 

My oncology team have said it’s pretty likely maybe 70% that my cancer will return and I’ll need to do all of that again, also that with my cancer the Niraparib will likely extend reoccurrence by X + 8 months. 
so basically by taking it I’m adding 8 months free on top. 

Sometimes I feel as though someone has triggered a complex bomb timer and I’m rushing around trying to find it a decide whether to cut the red or blue wire. 

The team looking after me don’t have any answers and I definitely ask too many questions. It’s not like I expect them to know, but my blind understanding was that they did, it was a jarring experience to suddenly realise no one has the answers, it’s a wait and see thing. 

id love to know how you feel about the process and the future, how you’ve dealt with the uncertainty.

Also please someone help me with brain fog, getting my mind back and help me feel less stupid, I am constantly struggling with work and saying sorry every time I say ‘sorry I don’t know/can’t remember/can’t find the words. I think it’s a double whammy of surgical menopause and Chemo fog. ‍

So much love to you all and yes I’d love to chat, keep in touch and see how we all get on, I’m super lonely as I work from home and have been so poorly I’ve just hidden away now since July. 

T x 

Hello rolled in glitter

It's very early days for you with Niraparib. Can I ask what dose your starting with? 

I think my husband just wanted me to have everything... They just want it to go away but as we know it doesn't. Having a re occurring cancer is like the sword of Damocles hovering above your head.

The chemo fog is absolutely real. The family understand and my friends know I've had treatment so they are forgiving and understanding. In my case it has got a little better as time went on. It's taken a while to write this reply because sometimes I just can't find the words. 

Initially I did look to the future in a sort of blind panic. I planned my funeral. I opened LISA for the grandchildren. I wrote my recipes in a book for my husband. I thought about moving so he would be closer to family etc... But now I just think about today and let tomorrow take care of itself. Although we all know there is a huge elephant in the room we decided together to put that aside and go on just like a normal day. It's worked for us. Blood appointments, CT scans, pain and discomfort just become part of the normal. 

I know how you feel about having your questions not answered but the team really don't know or have all the answers themselves. They only know what the trials and data tells them. They only know what they know at any given time but things change so quickly, new drugs, new treatments and new therapies. I have certainly learned to keep myself informed. 

There is an alternative to the paclitaxol which has less side effects but it's only used in extreme circumstances... It's very expensive. I do think it's the Taxol that is the most toxic for us. 

For me personally I will do everything that I can to keep well. Not for me but for my daughter who was diagnosed with stage 4 peritoneal, ovarian cancer with cardiophrenic nodes last June. I just need to be here for her and the children. I can't even explain how devastating this is. We though we would only have a few months together. She had the same chemo but reacted very badly to the Taxol and ended up back in hospital for over a week. They replaced the Taxol and she had less severe side effects. The chemo shrunk the heart nodes just enough for them to agree to surgery, she had the full optimal surgery with HIPEC. Unfortunately the heart nodes are in a place where surgery is just not an option. She is currently on BEV every 3 weeks for 18 months. She was not HRD so Niraparib was not an option. We were all hoping that she was and we had the same treatment. Neither of us carry the BRACA gene but they think there is a hereditary gene. It's not too common for a mother and daughter to have exactly the same cancer at the same time, but it does happen. We are currently working with genetics to see if they can find the gene because  my daughter has a daughter. If she is carrying they will offer pre emptive hysterectomy.

This is why perhaps I'm distracted from my own situation and just keep taking the treatment. My mind does wonder into dark places but the two of us just find the light. 

Please let me know how your getting on with your treatment. Sending love to you. 

Hey xxx

Thank you for your honest and vulnerable message and I am sorry to hear you are all going through so much. It is so consuming and being able to take a day at a time is something that I aspire to and thank you for sharing how you are managing all the horrors you have been dealt. 

The Oncologist has put me on 200mg of Niraparib. so as my dosage goes, for me it's 2x 100mg tablets before bed every day for minimum 3 years or unless/until I cannot tolerate it. I have been given Cyclozine for the sickness and something for the other end should I need it. 

I am negative for HRD and BRCA but they decided this was worth a try as my deposits were microscopic and found in 9 very separate places, it was more a case of if I could handle it, it was better than doing nothing. I suppose in some cases or differing NHS Trusts this may not be an option and they did give me the choice whether I wanted to try or not. 

I have taken 5 doses so far and the nausea is being to appear. 

Having just celebrated my 50th Birthday on 20th March I feel mostly determined to get past the the time my mother managed. She sadly and suddenly died aged 51 and 6 months of Liver & Pancreatic cancer, this was back in 2007. I know very little about her medical history as she was very private and we weren't very close. She did however have a full hysterectomy at 33 and she also had a large growth (grapefruit) removed from an ovary before that. I suspect that she had been missed or she had not told anyone and the cancer came back and found its way to whatever it could grow on. She was a heavy drinker and smoker, which I am not but that doesn't change the fact she was gone way too early.

I would love to understand your gene findings, and absolutely the more they discover the better outcome there is for more women.

Fighting to survive and appear strong and positive as people expect is exhausting, how are you managing, it reads like you are putting all your energy into your Daughters treatment and so not really having enough time for your own recovery, that must be very difficult? 

The emotions I am supposed to feel haven't really arrived yet, the anger is bubbling though now and I need to be prepared to manage that as my BS filter is already what perhaps is permanently broken.

My current goal is to try and get some semblance of life back, lose some of the weight I've gained in 3 months (15kg) and stay alive at least until 52!

The hair I lost is coming back with a vengeance, I only wish it would work harder on my head, lashes and eyebrows rather than wasting its time on my chin and moustache!!!! Does it not understand I am going through enough already???

The struggle is real with the wig game, I feel the' just wear a wig' sentiment so easy for people to say but I cannot cope with the heat, itching and general discomfort and then annoy my husband with me moaning that my head is cold. I even had a custom wig made... I can't even manage an hour in it before the meno sweats begin and I want to throw it across the room. How have you managed your self esteem and appearance, I don't recognise myself at all. 

Once again thank you for your message, it is truly humbling to hear your story and it brings me out from my echo chamber.

I wish you and your daughter all the very best, your love for each other is palpable.

XxXxX

Thank you for your reply, you have clearly had a rough time with the treatment, I can't totally concur with the checklist, what a horrid list it is too!

I have been put on 200mg from the start so I can't envisage what the full brunt of the side effect will be yet as I have only taken 5 doses so far, is it correct that the side effect worsen over time then settle? what does that look like in real terms? 

My cancer was an incidental find so I had symptoms I could only really relate to the Endo and Adeno, it was a confirmation if I am honest though, I knew something was wrong, seriously not just a simple lets insert a coil. 

How have you managed the transition from before to after diagnosis, you have done so brilliantly to get to year 4! I feel proud for you and so your family must be over the moon. I hope I manage that milestone too. 

You have given me so much hope, has the Niraparib manage to keep you symptom free for the full 4 years? 

The side effects you are managing, or not I guess are really bad, I have some of them post chemo with the main result being that I am now officially disabled with a blue badge and everything, at 50 that feels rather shocking as I was running along the beach back in June in Fuerteventura. It is rubbish that we cannot enjoy as we once did the life we are now fighting to keep, it s rather cruel and it makes me angry.

Thanks again for your message and I will keep fighting alongside you even if somedays we don't feel like getting out of our Pj's.

Sending so much love. 

xXx

Hello rolled in glitter. 

How are you doing? It's still very early days for you. It's 3am and one of those episodes of insomnia after not feeling too well yesterday. I have an appointment at 11.45 in the morning too see the Max Fax consultant about neuralgia. Possibly just another side effect.... Of course you would only know that, if you stopped treatment and it went away.... I'm not going to that for sure. 

You made me smile about your hairy chin mustache and wig. I must admit I didn't even attempt to go there. I just rocked the turban. I have 5 sisters who bought me various shapes and colours of square, long, triangle scarves. I had lots of pretty pins and clips and became an expert in the head wrap. I admit they helped me feel better about myself. 

You asked about self esteem. That's a hard one because at that time, and even now you sometimes don't recognise yourself. That's because the face and body so familiar to your every day has changed. No hair at all... Anywhere.... No lashes, no eye brows and the etc. I've always liked my bit of slap and never went out without the eyes and lipstick.  I did change my make up to a baked foundation which was much better. Boots have a service with Macmillan where you can go and have a make over and try different products. It was very useful. I say this because you asked about self esteem. This is what helped me to start to feel better about myself. My hair grew back white. I was naturally blonde before. But you know what, I absolutely love my hair now even with all the cow licks.

I too gained weight all over. Even going up a shoe size... But as time passed I've sort of gone back to normal and have a few pairs of shoes that are now too big. 

I keep what I call my cancer journey in photographs. The brilliant days, the good days and the not so good days. I took pictures having chemo and various appointments. After eye surgery (chemo affected my eyes). After having a carcinoma removed from my face. Pictures of the moon face no hair me. Pictures of my garden when all I could do was sit in it and not work in it. Photos of days out with the family. Special days out with my daughter ( these are even more special now) these photos created a memory bank for me, and now, when I look back at how I was at the start of treatment I say to myself look at you now and look how far you have come. I can now walk around the garden and when I'm out of breath I just stop and take a minute. When I was diagnosed with the bowel obstruction and told I could never eat normally again. I started making recipes and took photos of what I had made. I made them into a little recipe book.  Know your limitations and try not to push yourself out of the comfort zone. I'm trying to say it all takes time, we are all very different and have different ways of coming to terms with our new reality. Throwing your wig off shows that you are doing just that. I guess these things can help make you feel better but you know, just be, and be yourself. You are still loved in all your new forms and beautiful with a bum fluff or bald head. You sound like the sort of lady who will adapt and make the most of what is thrown at you. You make sure you live where your mum didn't. 

Yes. Is the simple answer to your question about Niraparib. My scans have shown no new cancer. I'm told the drug is doing its job and keeping me progression free. At least for the last 4 years. I am aware this could change at any time. The reason NICE license for 3 years is because there are cases of blood cancer occurring with prolonged use. Initially my CA125 went up and down but the last two years it's more stable.  Because my bloods are deemed to be in range and the CT shows progression free and I feel well... that's why I asked to continue with treatment. I will just wait and see what comes my way and deal with it then. In the mean time I carry on with the Difflam spray, mouth wash, Naseptin and nose spray, flexitol, eye drops and biotene jel with the odd paracetamol and ginger tea!!!!

My daughter had clinic yesterday I'm pleased to say the CT was good and her CA125 has dropped right down. Hopefully the Bevacizumab is doing its job too. She is having nose bleeds and bone pain. It's only her 3rd treatment so we are hoping these will also improve with time. 

Catch up soon x