I was fitted with a permanent drain for ascites 2 weeks ago, following a recurrence of HGOC in August despite a ned PET scan at end of July. Firstly I wondered if any of you lovely teal ladies have experience of managing these drains? I seem to be accumulating ascites so rapidly I need to drain everyday. This means I am draining 2 litres every day. I could probably drain more but bag's capacity is maximum of 2L.Am I draining too frequently which is causing more fluid to accumulate ? I have lost a lot of weight and feel generally unwell.
In the meantime I have been referred to UCLH for consideration of a trial. I've been told that the ARTSITRY trial would not be suitable as the drugsvcan cause additional fluid retention. I am going to discuss a possible phase 1 trial using a drug called Mirvetuximab Soravtansine. However I am not sure icon wait the length of time to check my eligibility?
I have also been given the option of weekly Taxol to provide better relief from the ascites. If I went down this path, would it then jeopardise my chances of future enrolment on a trial?
Your valuable thoughts and experience would be appreciated.
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Nov5
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Hi Nov5 I don't have experience of managing those drains and I would be advising phoning your specialist nurse tomorrow for advice I don't believe you are causing ascites to build up by draining it at all. I would not have the expertise to guide you about trials but it seems to me from a practical point of view you will end up choosing whichever option that says it will control the ascites and then you will look at other options afterwards Maybe are you able to check with the trial directly about entrance criteria and if you started the Taxol? Plus phone Ovacome Helpline there are patient reps for Trials who might know the answer xxx
Hi. I can’t help with the drain but if you can get on that trial. You should. That drug is called Elahere in the US and is the best hope for platinum resistant people. But maybe you could start on taxol first? Do check with the trial nurse. Xx
Hi Delia, I've been to discuss the trial today and it appears I can have the taxol first without jeopardising me entering the trial. As its going to take 3-4 weeks before results of tissue samples are back, I've decided to start the taxol in order to, hopefully, get the ascites under control and improve my general health.I've also spoken to my CNS and she's OK for me to drain daily as my most recent bloods aren't too bad.
Thanks so much for your thoughts on Elahere. Is it a trial you have experienced?
Hi. No I haven’t been on the drug but I know my oncologist is very excited about it because it’s the first targeted drug for platinum resistant ovarian cancer.
Has anyone discussed the protein loss and and fluid balance with you? As well as fluid the drain is removing proteins and electrolytes that you might need to replace. Best wishes,
I’m waiting to be accepted on to a trial at Guy’s, and the consultant I saw there recommended I start weekly taxol to keep things under control until a suitable trial opened. i’ve had 7 treatments so far, and I’m doing well.
Hi Numi, thanks for taking the time to reply. Following my consultation yesterday at UCLH I am going to try the weekly taxol. However, they've advised only 3 rounds at weekly intervals. You mention you have had 7 rounds so far, has that been for 7 consequetive weeks? Do you still have to drain too?
I’m fortunate not to ever have had ascites, despite being on my 4th recurrence. My treatment is 3 weekly treatments followed by a week off. I had the second treatment of my second cycle (so infusion 8) today. I’ve got a scan on Friday to see how things are going, but my CA125 is still falling, down 900 since starting. No decision has been made as to how many cycles I’ll have. I understand it’s often 6, so 18 infusions. I’m not seeing my oncologist here until mid November and the team at Guy’s mid December. The consultant from Guy’s said she’d review the scan and decide then what their next steps will be. Hope all goes well with your treatment.
I get drained every 2 weeks approximate 1.4 liters. Started out at 5 liters. It is paracentisis and they glue the incision every two weeks guided needle and ultra sound helps find the pocket. I am on Abraxane every two weeks hoping it will slow the cancer spread. Been ok and manageable. You must up your protein consumption! When you drain I was told the ascites is all protein that is consumed by cancer good to know as I lost 10 lbs and muscle from it. Now I do protein shakes twice a day monitor my protein intake have gained 8 lbs and muscle back as well as 3 points up of protein in my bloods.
Thanks for your really useful tips. Is it proposed that you continue this line of treatment indefinitely or is there a limit to the amount of doses you can have? What country do you live in?
I live in the USA and can be on this for unlimited amount of time as long as it is working when it stops have to switch to something else or if my bloods don’t support the drugs anymore
I was on Elahere and Avastin for a few months. It worked magically in the beginning as my CA125 was over 15,000. The Elehare brought it down to 350. And then it stopped working. It's good you are doing taxol first because it is the strongest and I wouldn't go off it until you are resistant. I'm carbo and taxol resistant which is why I started Elahere. Once the Elahere stopped working I got Ascites and had to get the catheter to drain myself as it was so uncomfortable. I'm now on Ixempra and Avastin but don't know if it's working as I've only had 3 cycles. Hope the taxol manages your Ascites! Ovarian cancer is just so much fun 🤣
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