Treatment has ended.

[Maltida61]

Have been off & on different chemo treatments since September 2018. All was going to plan will so we thought. Then 3 months after 1st cycle ca125 began to rise again. Went on another cycle of a different chemo. Levels remained much the same. 2 months after that tried yet another chemo. At 1st ca125 level dropped drastically & then it rose again. After being on this oral chemo for a year it has been decided that it's not doing anything anymore despite my CT scans been stable for 8 months. My ca125 has doubled since I started this treatment & I have become more prone go chest infections. So treatment has now been stopped all together. Unless another becomes available I will have to go it alone & fight this horrible disease with all I got left in me. Sorry if this post offends anybody..

[ivanco1]

Weekly Taxol?

[Bettyxxx]

Hi Matilda61It sounds as though you have been through a lot in the last couple of years without much luck xx. Have you had a second opinion from anyone else? Sometimes it can be useful even if it only clarifies the information you already have. If you decide you want to do this then i would pick a large centre that also are involved in clinical trials. The Christie in Manchester or royal Marsden seem to be the 2 most popular but others may know of somewhere else, you are entitled to this on the NHS and most consultants are happy to refer you, i did this via my consultant a few years ago. I think there is a link somewhere you can click to get more info or contact ovacome xx

Hope that helps and good luck

Diane

[delia2]

Hi. I’m not sure what country You’re in but I second Diane’s advice. Are you high grade serous or some other type of OC? I’m surprised you haven’t been on a PARP. Also the fact that your scans are clear is positive. It’s not clear too me whether your oncologist said no more treatments or whether you are making that decision. If it’s your own wish I completely respect that. However if it’s not, a second opinion would be good. I wish you all the best.

[Maltida61 in reply to delia2]

I am in new zealand. My ct scans show no changes.. What it there is unchanged. I have 2 slightly enlarged nodes . 10 mm & 13 mm & a visible small tumour in liver. These have been like this for 8 months. It started as OC in 2018. Had debulking surgery in Nov 2018.. They thought it was a success. I have been tested for brka gene. Was negetive for that.This is what they call secondary High grade terminal.

[delia2]

Hi. That doesn’t sound as dire as the word “terminal” would suggest. I think here that would be called “incurable “ but something you could live with for quite a while. After my second round of chemo I still had a small tumor but I went on a PARP inhibitor and it got rid of it. Even BRCA negative people are trying PARPs now. Good luck with everything!

[Maltida61 in reply to delia2]

Haven't heard of PARP. Oncologist never mentioned it either. I am assuming it is not a funded treatment here in NZ.

[Sashay2020 in reply to Maltida61]

Parp inhibitors are costly. I’m on Medicare in the US administered by a private insurer. Here, the pharmaceutical company that manufactures Zejula(niraparib) has a program to help pay for it. Niraparib has been approved for BRACA negative women. I am BRACA negative and am not on parp yet, but have read up on the cost. I was advised by my local pharmacy that the parp inhibitor would have to be ordered through the hospital pharmacy which knows how to work with pharmaceutical companies on the parp’s cost. Perhaps check with the parp manufacturer to see if there is financial help for patients in New Zealand. I hope you will be on to an effective treatment soon. Best wishes to you Matilda from Louisiana,

Sashay

[BellmoreBelle in reply to Maltida61]

Hi Maltida, I think it may be that PARP inhibitors are not yet licensed in New Zealand. Here in Australia, Olaparib has only just been licensed for use as of November 2020, and it is the first to have done so - and it is only available for first occurence of OC. I ran into extraordinary barriers when attempting to maintain my supply of Niraparib, having come to Australia from the UK late last year. As I was informed, there was NONE in the country, and no plans to import it, we were on our own, despite the earnest wish of the distributor to be able to help. I'm so sorry that you find yourself in this situation.

[Brum1966]

Hi lovely, hopefully the fact your scans show your stable is a good sign. Cancer markers can go up for other reasons than cancer so try not to worry I'm sure they will keep their eye on you. My marker had gone down to 9 after 5 rounds then surgery then 2 more rounds but then I had an endoscopic ultrasound and needle biopsy and it shot up to 195. Thankfully it is going down on its own all be it slowly and coming up for 5 months after last chemo it's gone down to 73 on its own. Your body may nerd a break and chance to heal. Fingers crossed for you hun xx

[Maltida61 in reply to Brum1966]

My ca125 has never been lower than 98 following debulking & 6 chemo treatments.. Highest it been was 6800 at diagnosis. Currently 2200.

[Brum1966]

Thanks for that Maltids61 I have taken some comfort from that. Got to see my consultant in 3 months I had a scan December whilst on watch and wait for 3 months and that said disease stable, he hasn't mentioned another scan and I forgot to ask. Hugs xx

[DouglasPouch]

Hello Matilda61. Please don’t feel you are offending anyone by posting about the reality of your situation. I am in the UK at a very good treatment centre but I am in a similar position - diagnosed 2 years ago (high grade serous non BRCA) and have now run out of treatment options. Some of us are unlucky enough to have aggressive chemo resistant disease. It can be hard to accept when you see others responding well to treatments - while at the same time being really pleased for them. Are you in pain? Do you have good palliative care available? That is so important at this stage. Sending you much love, Jane

[Ruebacelle]

Stay strong and hope for a change in options hugs from france

[Madmolly]

Go for it girl the fat lady has not sung yet