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No more treatment

30 Oct 2018 09:03

Hi everyone

Saw my oncologist yesterday who confirmed that we have run out of options to treat my ovarian cancer. Never easy news to take on board. I am however going to be meeting at some point to discuss trials which has given me hope. I actually feel really well at the moment and determined to stay as positive as possible and just live my life with friends and family. 

I was wondering if anyone else has been in a similar position and gone down the clinical trials route?

Thanks

Jan x

 

No more treatment

30 Oct 2018 23:28 in response to Velvet

 

Hi Velvet,

I am sorry to hear about the news you received yesterday - not something that any of us want to hear.

I am afraid that I cannot give you any help about trials, as I have not been involved in any. However, there are many people on here who have taken part in various trials and I hope that some of them will come along to chat to you soon. In the meantime, why not go to the blue banner at the top of this page and click on the search box and insert 'trials'. This will bring up previous posts from others who have had this experience.

I hope that you manage to find some more information from this.

Kind regards,

Jolamine xx

No more treatment

25 Nov 2018 20:50 in response to Velvet

So sorry to hear your news because you posted such a kind reply to me when I was freshly diagnosed.

I have no experience to help you but wanted to say I am praying for you and hope you get a good trial, Some of the imunotherapy I have read about can have miraculous results.

Fingers crossed for you!

No more treatment

27 Nov 2018 14:22 in response to Velvet

Hi Velvet,
I was told some time ago, that I run out of options and clinical trial is the option.
I decided (with my onc, indeed) that I will stay without any treatment as long as possible and they registered me in the clinical trial unit and keep an eye on trials possible. We will act when my cancer pushes something really life-needed.
In the mean time, I am the lucky girl with slower cancer who can be free for a while and can keep clear brain (no chemo and streoids). We will focus now on managing those bad stuff such as nausea, pain or sleeping but I would like to go some pills-free way here.

But to your topic - if they think, you would benefit from the clinical trial - go for it! :-)
Massive good luck!!!
Zuzanka

No more treatment

3 Dec 2018 19:00 in response to zuzanka

Hi

I had ovarian cancer diagnosed in Jan 18 after having a large ovarian cyst removed at a stage 1c. I received 6 cycles of carbo/taxol of which I had a rough time and dropped the taxol after three sessions as it was half killing me. I had the all clear in July 18 but had a few niggles that the oncologist wanted to keep and eye on this eventually resulted in another scan as my ca125 Was also creeping up to be told there was fluid around my lungs and abdomen and that it had returned in just 11 weeks that my prognosis was not good and gave us the devastating news of 6-12 months (I'm 49) as I have a very aggressive cancer called clear cell carcinoma. He mentioned a clinic trial in clatterbridge Liverpool called niccc the trial drug is Nintenadib for advanced ovarian cancer I fitted the criteria with time scale of reaccurance and I'm general fit and healthy I decided to give it a go but unfortunately I got the chemo arm of the trial and had my first round of caeylex on 15/11 I have fluid drained from both areas around my lungs as had a persistent cough and breathing problems. I have felt very nauseas and been sick quite a bit on this chemo and it's a 28 day cycle so next one is next Thursday. I'm not sure if when they do a scan after three cycles that if there is no improvement I could then try the trial drug I will ask more questions when I go next week. Here if you need to talk we are totally devastated and can't believe how quickly this has all happened to us

Lisa xx

No more treatment

9 Dec 2018 20:21 in response to Linkey

Hi Lisa

Only just read your reply. I'm so so to hear what you are going through, it certainly is a cruel and devastating disease.

I have since had a meeting regarding trials, and fingers crossed I'll meet the criteria. If not, apparently there is another chemo combination that can be offered, so at least I feel there is some hope. I also have 2 pleurx drains fitted, one to control the ascites and one for the pleural effusion. Unfortunately, the lung one seems to be causing problems and making me quite sick, which in turn means I'm loosing weight, which is not good!

I hope your next treatment goes well, and like you say.. maybe the trials option could still be there for you. It just seems a never ending round of hospital appointments!

Take care of yourself and thanks for getting in touch.

Jan xx