Parts, which one?

[Jacquiemoo]

Hi, Jacki here from the U S. I have needed a group and so happy to have each and everyone of you. Have been so blessed to be reading everything I have been going through. The fears and the not so good outcomes but the good outcomes keep me going! Thank you all. I had been diagnosed with fallopian, ovarian peritoneal cancer, stage 3c. I had 6 rounds of chemo. Debulking and total hysterectomy, a lesion on the dome of my liver and some on my diaphragm. They have removed all but a small amount they couldn't reach so I'm currently on 9 weeks of chemo. They will be putting me on a maintenance drug and I was wondering if anyone has a great success with any lasting over 3 years or more, hopefully. Would greatly appreciate input. Keep going, put up a great fight and stay strong friends! ❤

[Katmal-UK]

Hi. I was diagnosed with stage 3b OC in October 2007 and given 2 years. Still here in my 16 year currently over 9.5 years NED (no evidence of disease) and over 9 years on a trial of Olaparib. There are lots of other ladies doing well. Good luck going forward. Kathy xx

[Trickysite in reply to Katmal-UK]

Kathy is our shining light and an ever responsive support. She should be on K. Charles ‘s coronation honours list, or, at least, have a front row seat! Emma x

[Katmal-UK in reply to Trickysite]

lol Emma, thank you. I see myself more as just someone who has a lot to say, too much sometimes !

[Trickysite in reply to Katmal-UK]

No. The right words at the right time. x

[Jacquiemoo in reply to Katmal-UK]

hi, thank you! This is such encouraging news! I will discuss this with my doctor. Thank you, jackie

[delia2]

Hi there. I am 3 B, diagnosed in 2018, had one recurrence and then was on Olaparib for three years. I’m still ned and enjoying life. Wishing you luck!

[Jacquiemoo in reply to delia2]

thank you! So happy I found you wonderful ladies! ❤️

[Mommoo65]

Hi! Glad you found us! I’m also in the States and love this supportive group. I was diagnosed 3B in 2015. Debulking and 6 rounds of chemo. 2 years ago I discovered a lump in my groin. Another operation and a month of radiation. NED since then. I see my oncologist every 6 months and have scheduled CA125 tests to keep an eye on any recurrence.

Good luck and don’t hesitate to ask us any questions. There is so much knowledge and experience here! Hugs, Jill

[Jacquiemoo in reply to Mommoo65]

thank you for replying. I just received my ca-125 results today 30! I’m so happy..dr. Is going to talk about after chemo treatment. Are you on any right now? I’m looking for the better longevity medication. Some I have seen women use their cancer has returned. Thank you again, jackie

[Mommoo65]

I’ve never had any after treatment medication. My doc says as long as I have low CA125 (it’s been 6.5 since radiation) he doesn’t recommend them. But I’m going to do some research because so many have them prescribed post chemo. Im curious to why he doesn’t feel them maintenance drugs necessary.

[Jacquiemoo in reply to Mommoo65]

Hi, thank you for replying. I have a friend here that had a lumpnetctomy on both breasts, cancerous tumors. She didn't need anything after. Dr. Claimed her 100% cured. Not sure it's for everyone. Yes, I would ask the Dr for sure to see why not? Thanks again

[Tealgirl7]

I am from Canada. I was diagnosed with stage 4 hGSC in 2006. I had been ill for over a year when I found a lump in my neck. My first two grandchildren were born that month. I was given one to two years. As you can see I am still here. Just celebrated my grandchildren's 17th birthdays. I also have three more. Life has been good for me. I have never been cancer free. I am at present on a maintenance drug called niraparib.You can do it,

[Jacquiemoo in reply to Tealgirl7]

Thank you, I will ask Dr. So happy for you! Yes keep up the good fight..I will stay strong for my grandchildren too! Love them all so much..

[Pianoplayer731021]

Hi Jacquiemoo, I have been on Niraparib since July of 2020. I had a few stop and go again times when my blood count wasn’t right. They would like to take me off this drug in July of this year. That would be three years and the Dr. said something about that 3 year limit. I am also in the states and I am 76. I still can’t believe it that I have gone this long on my journey. My husband has pancreatic cancer, so we are dealing with a double whammy! Hope things go well for you. 💕🙏. Donna

[Jacquiemoo in reply to Pianoplayer731021]

Thank you, so sorry you are dealing with so much. I will talk to my Dr soon about this. I pray for miracles and believe they do happen. Will do so for you and your husband.

[Pianoplayer731021]

Thankyou Jacquiemoo for your kind message. I also believe in miracles. I have been NED for 3 1/2 years now and my husband is doing well with a year and a half of treatments so far. He isn’t NED, but things are staying stable so far. Pancreatic cancer is very deadly, because they can’t do surgery to remove the tumor. It is very tricky when it is found in the tail of the pancreas. It has spread out a little, but he is doing a clinical trial for his treatment right now. Thankyou for your prayers and I will pray for you also. Keep the faith! Sending my love and a warm hug, Donna xx 🙏💕🥰

[Jacquiemoo in reply to Pianoplayer731021]

thank you for your prayers also. So happy for you and pray the trial will help your husband. Please update when possible. I have 2 more chemo and then a scan. Praying it’s clear of cancer! Just want to get on with life, as I’m sure everyone on here wants to do! Stay strong, positive thoughts! We got this!

[Pianoplayer731021]

I have been on a parp inhibitor ( niraparib) since July of 2020. This was after 4 chemos, 5 hour surgery, and 3 more chemos. This niraparib has given me a few bumps along the way with some side effects. I would take a break and then start up again. They will take me off from this in July of this year. I can hardly wait, because I have had so many UTIs while on this drug. This will be 3 years in July. I also had one blood transfusion about a year and a half ago. They check my blood every 4 weeks, because niraparib does affect the blood numbers. Anyway, stay strong and just take one day at a time. Take care, Donna ( I live in the U.S. also and am 76. ). 🌷 ( the tulips will be blooming soon here in Michigan). Love it in Holland, Mi.

[Jacquiemoo in reply to Pianoplayer731021]

Thank you! We went to Holland, Michigan last year to see the tulips but we were too late. Was hoping this year but might have to wait now till next year. Thank you for the information. My Dr is going to do a genetic test on my blood to see which PARP will be compatible. I didn't know that could be done. Will let you know. Take care and keep up the good fight!