Update

[Luchie]

Hi My fellow warriors,

I'm sorry I have not posted for a long time, I've been very busy, and continue to live life to its fullest. I'm still on niraparib after 1st recurrence in April of last year. Had 3 infusions of carbo/taxol as I responded very well, my oncologist put me on niraparib since September, so I've done 10 months already, but my last scan showed some small nodules growth and my ca 125 slowly crippling up from 8,9,11,13,20,30 and now 83 but I don't have any symptoms of bloatedness and feel fine. I had Onother scan yesterday to see if there's a progression on the nodules, but if still the same and feel fine then I continue with the niraparib not unless I'm showing and feeling unwell then I may go back to carbo/taxol. So fingers and toes crossed that I won't need to have chemo just yet.

PS- For those who knew Gleedy, I'm so sorry to break the news that she passed away last month. I attended her funeral last week. She was a very nice, lovely and lady and had the pleasure of knowing her.

My love and best wishes to all of you.

Luchie

[Katmal-UK]

Hi Luchie. Fingers crossed your CA125 is holding and you don't need chemo yet. Thanks for the update on Gleedy, I do in deed remember Tracey, another lovely lady who has gained her teal wings. It never gets any easier to hear the loss of another lady from this awful disease. Condolences to her family xx Kathy xx

[Rlenesue]

Hope all goes well, Luchie... live life to the fullest... we've given too much to this disease too beat us now. I'm sorry to hear about Gleedy. She was sweet. 😥

[Petrolhead]

Glad you still feel ok. Difficult to not panic. Keep us posted.

So sorry to hear about Gleedy. Thanks for letting us know.

Best wishes

Fay

[Caroles1]

Hi Luchie,

I’m glad you are doing well.

So stunned about Gleedy, met her twice, lovely lady.Just another casualty of this awful disease.

When she lived in Essex, we were going to meet in Leigh on sea, but then she moved to Godstone and we met up with other ladies in Sevenoaks.

I didn’t know things had got that bad for her, just send my condolences to you and her family and friends,

Love,

Carole xx

[27-359 in reply to Caroles1]

Sorry, Carole. I should have let you know about Tracey. We had gone to Penny Brohn together, and become good friends, so I was hit badly by her death. Mary and I still meet up occasionally and are now joined by Anthea's daughter Jess. We meet at Pembury now, and I would love to see you again if you would like to join us one time.

Jenny

[Caroles1 in reply to 27-359]

It’s ok, I just assumed that she was meeting up with you all and that things were ok.lts difficult to know and I don’t like to pry.

I will definitely try and come to Pembury, as you know I have a lot going on, even more than before, if that’s at all possible.

Just let me know when you are meeting up and I will try.

I can’t believe how many of the ladies have left us, it gets me down.I hope Mary and you are doing well

Carole xx

[Purple-iris]

Hi Luchie

So very shocked to hear about Gleedy, I wrongly assumed she was doing ok as she hadn’t posted on the forum.

It’s heartbreaking how many wonderful ladies are no longer with us since I joined this forum around 3 years ago.

Please pass on my sincere condolences to her family and friends.

Must have been extremely difficult for you to attend her funeral.

I hope your disease stays stable and you don’t need chemo anytime soon. Glad to hear you’ve been living life to the full, think that’s all we can do really, even though it’s not always easy.

Love and best wishes Kim x 💜

[March2017]

So sorry to hear the news about Gleedy I met her at the Target Ovarian cancer day in Brighton in 2017 she was a lovely lady , my thoughts are with her family 💞

[Alifit]

I hope the Niraparib continues to work for you and that you can stay away from chemo for as long as you can.

Sad news about Gleedy - thank you for letting us know. Ali x

[Coldethyl]

Thank you for letting us know about Gleedy - condolences to her family - must have been very hard for you to attend the funeral.

Fingers crossed the PARP continues to hold things back and that you stay off chemo a while yet x

[gmc920]

Hi Luchie, glad to hear that you are doing well and I hope that the niraparib keeps you stable and off chemo for a very long time. So sorry to hear about Gleedy. Sending sincere condolences to her family and all of her friends.

xx Gina

[Ge0rg1na]

Wow what a long wait you will have until you get the results of your scan. It's a cliffhanger and a half but that's what it is to have OC. Always the waiting. But very good that you respond so well to treatment and that they are looking after you so well. I send you my best wishes and hope the wait isn't going to interfere with your enjoying life to the full Gina xx

[LittleSan]

Hope your numbers and scans stay stable and you continue to feel well.

So very sad to hear about Tracey. I never met her but a couple of my friends said how lovely she was. Xx

[January-2016-UK]

So sad to read about Gleedy.

Hope things stay stable with you.

All the best.

[Hidden]

Hi Luchie, sounds as though we are in a similar position although I had to stop Niraparib because blood pressure soared.

CA 125 rising 97 from 47 in a month so another scan arranged for a week Friday then see Onc 9th August.

Probably back to carbo.

So sorry to hear about Gleedy.

Best wishes

Janet

[Cropcrop]

Hi luchie, here’s hoping your CA125 either reduces or stays steady and you don’t need any chemo a5 the moment.

I remember Tracey too, it’s just too sad that we’ve lost another lady to this insidious awful disease. I hope her teal wings are spread wide. Thank you for the update and I have my fingers crossed for you ❤️Xx Jane

[marylondon]

Hello Luchie, I hope your more recent scan doesn’t show anything new & you continue to be asymptomatic & can continue on the Niraparib . Niraparib is so much more doable than Chemo. . I am very disappointed as I have had to stop Niraparib after 8 months doe to abdominal symptoms , rising Ca125 & scan showing new peritoneal disease . Like you , I’m living life to the full & have no time for chemo ! So I’m hoping to delay chemo for awhile & enjoy the summer .

Best wishes , Mary

[Hidden]

Hello Luchie - Thank you for your update. I am facing chemo again shortly, but I hope to be offered Niraparib once finished. Long may Niraparib work for you and you continue to feel well.

[jools53]

hi luchie, same position coming up for five yrs, ca125 after finishing cisplatin now 105!

now on day two of niraparib ,hoping I cope well on it seem to have a lot of energy all of a sudden! just praying it last for a good while , just had my second granddaughter so much to live for. Where are you with treatment? and where is your treatment dealt with! good luck , so many of our ladies leaving us makes me so nervous and sad , but we fight on god bless us all jools xx