Ascites, information, experience and prevention?

Hello all,
Well. It finally happened. I had to go to hospital for removal of the dreaded ascites. They took several litres. Although the procedure itself is bearable, the thought of having to head to hospital weekly, bi-weekly or monthly does not put me in a happy place.
Could others help me with their experiences with ascites. Do we know of anything that can reduce the liklihood? diet, walking? My first bout was very uncomfortable, creating edema in legs, making it impossible to find a comfy sitting position, stopped the pain medication from doing its job.... not to mention making me look pregnant. I know this is just the start of a process now so just looking for some words of wisdom and encouragement

Report post

24 replies. Join the discussion

I don't have any information on this...but I am very interested as I think that I may have this. I will be watching to see if anyone posts.
I have times at night that my pain medicine does not work....I feel fullness in my abdomen and I look like I am pregnant and it is hard. Then I wonder if some kind of stent would work also? I just hate to go in that direction....like you said....but you have to do what you have to do right? Good luck with your drainage....hope it gives you some relief. Do you know how and where they drain it from?

Report post

Hello all. I have had two experiences with having my asites drained. The first was a miserable trip to the ER, my onc ofc thought they would have a radiologist do the procedure; but after two CT scans with out contrast and with, the ER DR. proceeded to hit and miss finding an area where the fluid would drain. They did finally find a place and drew off nearly 4 liters.

Fortunately, this last time my Dr. set me up directly with the radiology dept and they have put in a Pleurex Catheter. I will now be able to drain the fluid off as needed without having to go back to the hospital. I am already over most of the soreness from the procedure where it took weeks for the bruises to go away after the first fiasco.

I also would like to hear from others experiencing this problem and anyone with a catheter to visit with.

Blessings and prayer to everyone out there.

Report post

I too have had it drained twice. Once by my gyn/onc in the hospital, once by a radiologist using a CT scan to guide him. My gyn/onc told me that the fluid would dissipate as the chemo worked. And he was right both times. So hopefully as the chemo beats your cancer back, you will find that the ascites is beaten back as well.

Report post

I know ascites is fluid but what causes it ? Why do some get it and others don't ? Is it due to the cancer or the surgery itself ?

Report post

I have ascites. I'm lucky that mine doesn't build up very fast. Most of mine was removed in surgery last May -- in August I needed a paracentesis and again in October.

My gyn/onc says the ascites is an inflammatory reaction to the implants in my abdomen and the only way to stop it is to kill the implants. She says chemo will usually do the trick.

I also get some swelling around the ankles, but if I eat enough protein that goes away. (If the protein level in your blood stream is low, osmosis allows fluid to move from the bloodstream into the tissues. If you have lots of protein in the bloodstream, the fluid moves out of the tissues into the bloodstream and can be excreted.) You could try making sure you get 50 g of protein for 3 or 4 days in a row and see if the edema goes down.

Ascites can have several causes. Ovarian tumors often cause it. It can also happen if something is blocking blood flow through the liver or through the heart.

Have they done an analysis of your fluid? When they do that, the chemistry of the fluid gives clues about the origin. Ascites caused by cancer is high in protein. If blockage of the blood vessels is causing the ascites, it's low in protein.

If the problem is blockage of the blood flow, ascites can often be controlled with diuretics and salt restriction. If you were likely to be helped by that, your doctor probably would have said so, but you could ask just in case. My primary physician had me try a diuretic last summer, and it took a little of the fluid off but wasn't a solution.

I'm really sorry you're going through this. Are you currently doing chemo? I've had 4 of 6 chemo treatments, but my ascites is still with me.

Other than getting plenty of protein and avoiding salt, I don't know of any change in diet that could help. I'm sure walking is always good, especially for the edema.

Report post

Sunshinesmama, could you tell us a little more about how the catheter works? Does it restrict your activities much?

Report post

I've been suffering from ascities for over two months. I've had been drained I think about 7 times--usually over 4 liters. It's driving me crazy!! . I'm down to 100 lbs but have this enormous additional 10lb stomach of fluid. It makes it hard to breath, hard to bend over and even hard to wipe your butt. No clothes fit, it's embarrassing to be seen and you feel like an old beer guzzling hag. Any constipation or bowel issues make it much worse When it's drained it still doesn't go anywhere close to flat and fills up again. There is also a small encapsulated pocket that won't drain. Draining provides a little relief, but is painful and your stomach feels as though it's been punched afterwards.

A homeopathic dr. suggested Taurine and poria cocos to help with the ascities but so far they have not. Windsor Canada apparently got relief from ascities at the Issels clinic from clay packs and and B17 but going to Mexico isn't an option. If anyone has any suggestions, I too would love to hear them. I'm really about ready to just stab myself in the stomach!!

Report post

There's a good (but long and dry) article on malignant ascites here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880345/

It describes all the standard treatments. At the end, they talk about catumaxomab, which is an experimental treatment for it. It sounds promising to me, but I haven't heard very much about it. I think it's in Phase III trials.

If you google ascites, don't panic. Most articles start out talking about what a dire symptom it is, but deep in the article they'll point out that ascites caused by ovarian cancer is different. 85% of patients with ascites have cirrhosis of the liver, and something like 10% have advanced heart disease, and most of the remainder have a cancer of the digestive organs, so it takes a lot of digging to find ascites information which pertains to us.

Report post

L473, they put a large needle into the belly and let the fluid drain out through a catheter tube. That sounds horrid, but it's not bad. I think I've had it done a total of 5 times. They inject some lidocaine first to numb the area. That burns a little for a moment, like a novacaine shot. Three times I literally didn't feel a thing once the lidocaine was in. Twice it was uncomfortable. The same doctor did both of those, and not surprisingly he's the one who always has an opening in his schedule. If I have to keep doing this I'm going to figure out how to always get the pain-free doctor!

Usually they like to do it along with an ultrasound so they can see the best place to put the needle.

Junybug, it's caused by the cancer. I have implants all over my peritoneum and my doctor says that irritates the peritoneum and makes it produce fluid. But there can be other factors. If cancer cells have clogged the lymph nodes, that prevents fluid from draining out of the peritoneal cavity. And I think another doctor told me the tumors themselves can secrete fluid. Something about the cancer can also change the way the capillaries work, allowing fluid to ooze into the peritoneal cavity when it shouldn't.

I have no idea why some people never get it! And it seems like some people have it early on but then it doesn't reappear when they have a recurrence. I had it before diagnosis and it came right back after my tumors were removed.

Report post

My mother has terrible ascites and edema. At one point she was carrying over 60 lbs of fluid. She could not walk, get up by herself or breathe or eat well. She was on 24 hour oxygen and morphine. We didn't think that she would live through it. Then, she had the experimental IP catumaxomab. ( I had read about it in a study, discussed it with the oncologist who had heard about it at a conference and we agreed to give it a shot.) She was the first in northern California and we had quite a difficult time finding how to do it. (that was our 9 hour hospital day) It really was a last ditch effort to save her life. Thankfully it was successful getting the water moving out of her body. She still has to go for biweekly peracentises. She has lost about 45 lbs of fluid, can walk, rise, eat and breathe. No more oxygen, or morphine, only cannabis for the pain. The fluid is slowly moving out of her legs, we can see that she has knees and ankles now. She has been having albumin infusions to boost her protein levels but we are beginning to cut back a bit on those as her protein levels are beginning to stabilize. All in all, for her the ascites has been a nightmare, far worse than the Chemo. In fact, without the ascites, she would feel pretty normal.

Report post

imagine21, thank you for sharing her experience with catumaxomab! How long ago were her treatments -- does this seem like a treatment that gives some long-term relief?

And do the treatments cause any side effects?

I'm sorry she's had such a horrible time with the ascites. I can't imagine how she endured it.

Report post

Mom had no side effects from the IP catumaxomab. She only did it once because we had to pay for it out of pocket because Medicare wouldn't cover it. I will fight for reimbursement though. We would do it again if possible. There had been no long term relief other than it seemed to jumpstart her body's ability to get rid of the water.

Report post

Imagine, did she get that result from a single treatment? In the trials I've seen, they gave four treatments at four-day intervals.

Catumaxomab really sounds interesting. I wish I had the option. They've gotten approval for it in Europe and they're conducting new trials in Europe, but I can't find any indication that they're trying to get approval in the U.S.

Report post

The catheter is inserted into the abdomen, mine was done by the radiologist guided by ultrasound. They did just give me the local anesthetic with some other med by IV to help with the pain (mostly residual pain and soreness from the first procedure which left me black and blue). They sent me home with bottles and sterile kits for when I drain the fluid, it has alcohol swabs, gloves, new dressing and big plastic cover to keep the line that is outside your body clean. It is not too difficult and am lucky my sister was nurses aide for years so she helps me when it is time. They recommend every 1-2 days, we only got about 800 ml when we drained on Sat. will see how much comes off this evening.

Report post

Sunshinesmama, thank you for the reply. I hope it works well for you!

Report post

Imagine21 -- you probably already know this, but I orphanet.net lists catumaxomab as approved by the FDA as an "orphan drug."

Their information on it is here:
http://www.orphanet.net/consor/cgi-bin/Drugs_Search.php?lng=EN&data_id=5721 3&search=Drugs_Search_Simple&data_type=Status&Typ=Sub

I hope Medicare will come through and cover it, and that your mom is improving.

Report post

Dear Imagine, I'm currently @ M.D. Anderson, Orlando w/ my Mom. She has stage IV o.c. (dx'd 9/08). Until recently, she's had no problems with ascites. However, she just had a paracentesis done to pull off 2liters of fluid. She has completed 6 courses of chemo & has only retained remission once for a very short time. Her gyn-onc is telling us to look @ clinical trials. I stumbled on this discussion...thank u for the timeliness! Are they still offering the Catumaxomab in CA? If so, what hospital? It sounds like this has been a recent treatment for your Mom? We'd be grateful if you could share your info. You can also call me @ 734-645-5473. Thank you & God bless you & your Mom. I know some of what you must be going through. Pam

Report post

Pamdahl, I hope imagine21 is still watching the discussion, but she hasn't chimed in lately. I did some homework on it which I'll share.

Catumaxomab (also called Removab) is made by Trion Pharma (http://www.trionpharma.de/index.php?id=81) in Munich, Germany. Another German company, Fresenius BioTech (http://www.fresenius-biotech.com/), does the development and marketing for it.

They are selling the material in Germany and doing many trials throughout Europe.

Fresenius gives an email address for inquiries on their web site, so I wrote to ask some questions. They said they are not conducting any trials in the U.S. and don't plan to get FDA approval. They said I could import the drug if my oncologist requests it direct from them.

They said I cannot be told the cost until my oncologist orders the material and a pharmacist in Germany prepares to ship it. Darn! I wished I'd called them instead of emailing them so they could hear me laughing at that marketing strategy. ;)

It was after they told me they won't try to get FDA approval that I learned they are in fact approved by the FDA as an orphan drug. I don't understand just what it means to be approved as an orphan drug, but I would hope it might give people a fighting chance to get it paid for by insurance or Medicare.

The emailer in Germany also said if my oncologist contacts them then she'll be put in touch with other people. I think a doctor needs to initiate the conversation to get any real information.

The Fresenius web site gives a Massachusetts address for their U.S. office. If I were going to pursue it further I think I would try them. The people answering the emails at international headquarters probably don't have to sell anything to keep the lights on.

In the meantime, I talked to my gyn/onc about it. She wasn't familiar with catumaxomab, but she said Avastin has a good track record for stopping ascities, so I'm hoping I might be able to try that next.

Good luck to your mom! I hope she'll find a treatment that can get her into remission.

Report post

Really interesting for future reference about something many of us fear. Helps put those fears to rest when we learn there can be a game plan ahead of time. As a nurse researcher for 40 years, these are the articles I crave and appreciate most. Thank you for some extremely pertinent, valid, practical information with contact source to boot. Sue

Report post

Another question -- when you have your ascties drained, how do they position you?

The first time I had it done they cranked the bed up so I was in a sitting position. They said that was to get the best access to the fluid.

But ever since then they've made me lie flat on my back. When they're done and I get up, I still have fluid above my belly button and in my flanks. It seems to me lying flat distributes the fluid so they can't get at as much of it. I have so little appetite because of the ascites, I want them to take more so I can eat well for a while.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support OCNA

Help the Ovarian Cancer National Alliance reach its goals and support people like yourself by making a donation today.

Donate to the Ovarian Cancer National Alliance

Discussion topics

Support OCNA

Donate to OCNA

Community leaders