Good news!: Hi ladies. It's been a while since I... - My Ovacome

My Ovacome
13,291 members15,937 posts

Good news!

Rlenesue
Rlenesue

Hi ladies. It's been a while since I posted but I just wanted to share with you this news. As some of you are aware, I started hyperbaric treatments to close a breast wound. It shrunk by 50% but I'll take what I can get. Unfortunately while doing those treatments, my 3rd recurrence of PPC was detected after treatments finished. My Ca125 was 977. I then started the Niraparib December 3rd, and results have shown that it is working! My Ca125 as of Jan 10th is 280. I've been on Niraparib only 5 weeks and I'm thrilled that this may be the cure for me. Cancer maintenance is the way to go!

37 Replies
oldestnewest

That's wonderful news! Are you on 300 mg.? Niraparib? I'm on my 4th month and I'm doing very well with it on 300mg. Long may it continue for a long time.🙏

Rlenesue
Rlenesue
in reply to Luchie

Thank you, Luchie. I am on 300mg and my blood counts are at a little below range but I am tolerating it. Waiting for side effects to diminish.

Congratulations!

This is good news for all of us!

We are all hoping to get on the PARP inhibitors by hook or by crook.

Thank you so much for posting.

Hugs,

Laura

Rlenesue
Rlenesue
in reply to Lindaura

Thank you, Laura. Everyone should be able to use the parp. It's as close to a cure as we're going to get! Your chance will come, you'll see.

🤗 so very pleased for you. What a great start to a new year

LA xx

Rlenesue
Rlenesue
in reply to Lily-Anne

This is a great start for a new year for a change....lol. I'm thrilled and feel that I can finally breathe. Xxoo

That's great news! I'm so glad.

Fantastic news! I’m so happy for you! 🤗

xx Gina

Rlenesue
Rlenesue
in reply to gmc920

Thank you, Gina

Thats fab news long may it continue fir you xxx

Rlenesue
Rlenesue
in reply to Bettyxxx

Thanks, Betty

Great news xx

That is great news. I’m on it but it does not seem to be working been on it 4 months. Got told Wednesday that I have 2 very small nodules on bowel and a very rare nodule in my 3rd rib. My CA125 is 28

So glad it is working for you.

Rlenesue
Rlenesue
in reply to CLP72

Your ca125 is within range. Perhaps the nodules will disappear as long as you use the parp. Good luck xxoo

IrishMollyO
IrishMollyO
in reply to CLP72

Hi there

I'm sorry to hear the Parp is not working as expected. I hope you don't mind me asking how your rib nodule was picked up and if you had pain in that area. As I'm about to embark on treatment for second recurrence of PPC I have unbearable pain in my ribs at the site of last year's mastectomy. Recent scan didn't show up anything and neither did a chest X ray. My GP prescribed a mix of paracetamol and Codeine which just takes the edge off the pain.

Once again I'm sorry for intruding on this discussion and I do hope you will find an alternative treatment. Take care

XX

💚💕

CLP72
CLP72
in reply to IrishMollyO

Hi

It was picked up on my 3 monthly CT scan. No pain at all. Can I ask what PPC is?

Rlenesue
Rlenesue
in reply to CLP72

Primary peritoneal carcinoma. Cancer cells within your abdominal fluid. They then bulk up and attach to the seal of various internal organs. Treated same as ovarian cancer.

IrishMollyO
IrishMollyO
in reply to CLP72

Hi there

PPC is Primary Peritoneal Cancer which is a rarer form of Ovarian Cancer. There are some people on the website who have the same type. The treatment is mostly the same as for OC. Thank you very much for responding to my question and I wish you well for the future . Take care

💚💕

CLP72
CLP72
in reply to IrishMollyO

Hi

Thanks for responding to my question. Are you currently on chemo? When did you get diagnosed?

IrishMollyO
IrishMollyO
in reply to CLP72

Hi there

I was diagnosed with high grade , stage 3C in 2011. I was treated with Carboplatin and Taxol and responded well. I remained NED until 2016 and had a recurrence in my peri aortic lymph nodes . Carboplatin brought me back to stable again . Then I had a mastectomy in Dec 2017 for an unrelated BC which was followed by Radiotherapy . In two weeks I will start Carboplatin/Taxol once more for a second recurrence in the same lymph nodes. In the meantime I’m keeping my fingers crossed and hands joined for yet another stable period. It has become a way of life now and I do realise I am veery lucky to be writing this ! Best wishes to you.

X X X

💚💕

Brilliant news long may it continue Pam x

What a great feeling to see those numbers! Congratulations---wonderful news. oxox

Rlenesue
Rlenesue
in reply to Maxjor

Thank you so much!

Congratulations on your body’s great response-long may it continue!!

Christine xx

Great news and long may it last!

Excellent , very hopeful news . I ve been on Niraparib since mid Oct & doing ok . It is my big hope so that I can avoid the need for chemo for as long as possible. X

Rlenesue
Rlenesue
in reply to marylondon

Yes, Mary. That is the goal to avoid chemo and cancer! Xx

Indeed . Cancer we have no time for you !

Very best wishes for 2019 .

Very happy to read this lovely news, well done you. Are you BRACA positive may I ask? I am on Olaparib and seem to be doing ok and feeling well. Xx

Rlenesue
Rlenesue
in reply to SCWI

Yes, I am braca positive with a 280 ca125 from 977 in late november.

Well done on such a wonderful response and long may it continue. Keep on posting your good news.

X.X

💚💕

I will let you ladies know. And thank you sa

Great news!! I started Niraparib end of December just before Christmas! 200mg dose. Apart from the initial side effects of headache, back pain and nausea I’m tolerating it well. The only lasting effects at min at very dry mouth and insomnia! Some nights can sleep 6 hours but on a bad night only managing 3-4 hours 🥺😴 bit I’ll take that over chemo any day!!! Just so have to watch bowels as can cause constipation, what’s new??!! So I’m making sure I drink plenty water. Hope your numbers continue to drop, I’m at first check up with consultant Thursday so will see how bloods are and if my body is coping with it.

Much love

Sam.

Rlenesue
Rlenesue
in reply to Samjane

That's wonderful, Sam! The side effects are a downer, the worst for me is lightheadedness and fatigue. Insomnia plays a role too. I average 6 hours a night. Sometimes I'm still awake at 6am..ugh. but the side effects are worth it, the alternative is too common for us all. Stay strong and do let us know how your bloodwork comes out. Xxoo

Good for you! You are a trailblazer for all those who may follow so a big thank you too. Xx

Rlenesue
Rlenesue
in reply to Mrsmerlot

Thank you.

Thats really great news did you go straight onto niraparib without chemotherapy

You may also like...