Ascites

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  • #92550
    spapera
    Member

    Karen, thank you so much for all of that terrific information. I really appreciate it!

    Very best,
    Steven

    #92549
    karend
    Spectator

    Daisy,

    You are so welcome, and I only wish that I could make things better for you both.

    My mother in law experienced jaundice, confusion, ascites, and the “weeping” edema just as your mom has now. I do know how it feels to want to do something, anything to help.

    You are doing just what your mother needs right now; you are a kind and loving daughter who is attentive to the comfort of your mom. Everything that you do, even sitting with her and chatting, combing her hair, giving her sips of water, or putting lip balm on to keep her lips from being to dry, is important…loving….and make a real difference in how she is feeling.

    -Karen

    #92548
    karend
    Spectator

    Steven,

    I will say that in my practice of close to 20 years, I recall giving albumin infusions two times for acites related issues/cancer affecting the liver. One of these times was at an academic medical facility, and once at a community cancer center. I do remember that the individuals whom I gave the infusions were stable, though very ill.

    There is quite a balancing act that occurs to keep an individual safe, and all treatments must be carefully considered and the risks vs. benefits.

    Albumin is a blood product and is infused and treated similarly to a blood transfusion, though it has a lower risk of reaction. It is generally given as a volume expander and must be used with caution.

    http://www.fda.gov/downloads/Biolog…ionatedPlasmaProducts/ucm056844.pdf

    Your post had me searching through medical literature to see what the experts have to say about albumin infusion for the treatment of ascites/edema, and here is what I found:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3290049/

    “Management of patients with ascities in GI malignancies is controversial”.

    “A logical approach is to individualize treatment. The rationale in the management of malignant ascites involves consideration of survival and QoL issues. Palliative techniques play an important role in the reduction of symptoms, which bear a direct correlation to patient satisfaction and therapeutic choices”.

    QoL= Quality of life

    “The most commonly used means of managing malignant ascites was paracentesis, which was also felt to be the most effective by the group surveyed. After paracentesis, diuretics and peritoneovenous shunting were used most frequently, but there was no apparent consensus as to their effectiveness.14 A survey by Lee and colleagues showed that paracentesis and diuretics were the most commonly used procedures in management of malignant ascites followed by peritoneovenous shunts, diet measures and other modalities like systemic or intraperitoneal chemotherapy”.

    “There is no evidence of concurrent albumin infusions in patients with malignant ascites”.

    It is difficult to find literature on the use of albumin for malignant ascites. Most of what I have found discusses the treatment of ascites in patients with cirrhosis.

    The indications for albumin infusion for someone such as your mother may be if she has at least 5 liters of fluid removed via her abdominal catheter (White, 2014). This appears to be a common reason for the use of albumin, and similar to your mother’s situation. This same article by White does state albumin has been used to “mobilize ascites” although the studies cited discussed individuals with cirrhosis of the liver.
    Outpatient Interventions for Hepatology Patients With Fluid Retention: A Review and Synthesis of the Literature
    White, Asha DNP, RN, ACNS-BC

    There are other studies that I have read that state that the use of albumin is well established in certain instances (large volume paracentesis, volume expansion, kidney disease, etc.), but controversial in others (high blood pressure (hypertension), fluid in the lungs (pulmonary edema), anemia, etc).

    So, I know that I have thrown a lot of information at you, but it is good to see what the evidence out there says about treatment for ascites. I can say without hesitation that in my experience, treatment of ascites/edema is based on the quality of life of the affected individual. I have seen people have a weekly paracentesis performed, or a valved catheter with which to periodically drain the fluid. I’ve also seen medications like Lasix given to reduce the fluid retention, as well as restricting sodium and fluid intake. Other times no measures are taken as the individual is comfortable and treatment will do more harm than good.

    I feel that if I were in your situation, there would be no harm in asking your mother’s oncologist how they feel about albumin infusion for the treatment of her ascites/edema. Perhaps you will find that they may be open to trying it, especially since she is being treated at Rutgers. Although one study I read did not recommend it for use in malignant ascites, this study is from 2009 and new evidence may be available that contradicts the findings of this study.

    Most importantly and the reason for putting so much information into this post, is that being informed and able to discuss treatment with the oncologists/nurses will help you as you advocate for your mother. You never know, perhaps you will spark an idea in the oncologist and help them to consider treatments that they might not have otherwise!

    All the best to you and your mother, Steven!

    Karen D., BSN, RN, CHPN

    THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

    #92547
    daisy1
    Spectator

    I had a meeting with her doctor today and was told Mum’s liver is swollen and that her fluid is malignant. They are not going to drain it at this stage as it’s not affecting her breathing. I have asked them to keep an eye on her legs as they are swollen again and leaking. Thank you so much for taking the time to write all that information for me Karen, I appreciate it very much. I make sure her feet are elevated and I check them each day.

    She is becoming quite jaundiced now and they said her albumin levels are lowish. I guess her body is slowly shutting down as the cancer spreads like wildfire through her body.

    #92546
    spapera
    Member

    Karen and CC FIghting Family, my mother has been experiencing similar fluid development and retention issues and has a catheter in her belly that we use to drain about a liter per day. I understand the causation is likely due to protein deficiency caused by liver function issues related to cancer progression. Mom is also on TPN due to issues with eating and appetite. Is there any treatment or medication to increase or supplement Albumin levels?

    Right now, mom has had one infusion of Keytruda two weeks ago and we are exploring with her oncologist the use of Dasatinib/Sprycel given that she has the IDH mutation in her cancer.

    Thank you,
    Steven

    #92545
    karend
    Spectator

    Daisy,

    I’m sorry for the late reply! It sounds like the physicians have already gone ahead with the lasix, which is an excellent diuretic used to reduce symptoms such as edema in the legs.

    You asked if the edema of the legs is normal, as well as the leaking of fluid. Edema or swelling can occur along with the ascites (fluid/swelling of the abdomen) which your mom is experiencing.

    It is somewhat complicated to explain, as there are several things that can cause what is called dependent edema of the lower extremities…one being a liver that is having difficulty functioning. Your mom’s albumin level is quite possibly low because of the cancer and decreased appetite/nutrition which is no fault of her own and is common. (Albumin is a protein manufactured in the liver). With a low albumin level, fluid in the body that is normally within the vessels will leak out causing ascites and eventually the edema of the legs that you see. When the tissues in your mom’s legs are unable to retain this excess fluid that is not within the vessels, it will leak out. Sometimes fluid filled blisters will form as well.

    I personally have never used sanitary pads to absorb the fluids, but I think that it was probably a good and safe way in which to manage the leaking. The nurses probably do not want to stick anything to the fragile skin, and want air flow as well. They also need to watch your mom’s legs to assess them for signs or symptoms of infection or other such issues.

    In my practice I have sometimes used large absorbent abdominal wound pads over the leaking areas, which I gently wrap with kling wrap which is a very loose gauzy roll of dressing material. Elevation of her legs is another thing I would do very often as this may help to decrease the swelling.

    Here is some information that is for nurses, but may be helpful for you to read a little bit about edema and fluid leakage from the legs/extremities; some of the issues nurses are watching for, etc.
    http://www.nursingtimes.net/clinical-archive/wound-care/the-management-of-fluid-leakage-in-grossly-oedematous-legs/205424.fullarticle

    The only thing that I would add is that I would not think that compression hose would be used for your mom to decrease swelling. I also think that most likely elevation of the legs and medications will perhaps be the avenue chosen by your mom’s physicians as they are not overly uncomfortable, but are still treatments that are safe for her, and they work.

    From what I have gathered, it sounds like everyone is working hard to keep your mom’s quality of life high at this time- to not cause any undo discomfort for her.

    I hope all of this information helps! I’m sorry that this is such a lengthy post!!! Of course please do remember that I’m not a physician, and the information I have provided is just what I know from my own nursing practice and is my personal opinion and not medical advice.

    I advise you to ask as many questions as you need to from your mom’s physicians/nurses to get the answers that you need.

    And lastly, what a wonderful daughter you are to search for everything that you can to help your mom, and I will be thinking of you both!

    -Karen D., BSN, RN., CHPN

    #92536
    daisy1
    Spectator

    They gave her huge doses of lasix and her swelling is greatly reduced today. I am very thankful as her stomach was so tight I thought she would burst. Her legs have gone down a lot too but look terrible as the skin didn’t retract so she has loose, wrinkled skin now. She is a little confused so getting information about her treatment is a little hard. I can’t be there for doctor’s rounds as I have 3 kids I need to get off to school at that time. I will get all the answers on Friday at my appointment.

    #92544
    marions
    Moderator

    Daisy…..i mailed the information to Karen, but have not yet heard back from her. Will send a reminder e-mail. Daisy, is this hospital not able to reduce the fluid build-up with paracentesis? It is widely used and greatly increases patient comfort. Please see below:
    http://www.cancer.net/navigating-cancer-care/side-effects/fluid-abdomen-or-ascites

    Hugs,
    Marion

    #92543
    daisy1
    Spectator

    Thank you Marion, I have given a copy of the power of attorney to the staff and they have put it in mum’s file. I have a meeting in two days with her care team.

    I am getting concerned about the fluid leaking out of her legs. It’s getting worse as is her stomach swelling. She looks like she is going to burst it’s so big and tight :(

    #92534
    marions
    Moderator

    Daisy…..Do you have a copy of the power of attorney? You may want to show it to the staff while requesting to speak with the physician. And, be flexible and explain that gladly you will accommodate his/her schedule.

    Regarding fluid leak, I will send notice to Karen, oncology nurse, for clarification.
    Hang in there.

    Hugs
    Marion

    #92535
    daisy1
    Spectator

    During my hospital visit with mum yesterday, I noticed the nurses taping sanitary pads to mum’s lower legs. Her legs are so swollen that fluid is actually leaking out of them. Is this normal? Should I be doing anything about this?

    I hate that the hospital do not keep me informed of anything. Mum has told them repeatedly that I am her power of attorney and she wants them to discuss everything with me and not her as her brain is not functioning properly.

    #92542
    marions
    Moderator

    Daisy…..great job. Your mum raised a fine daughter.
    Hugs,
    Marion

    #92541
    daisy1
    Spectator

    Thank you Marion. I have a loud voice when it comes to my mum and I will use it. I believe the doctors are avoiding me as they wish to move her to a residential home and I demanded she stay where she is. The residential care facility is a user pays facility whereas the hospital care is free. Clearly they are basing her care on money and not her best interests and as I am fighting them on this, I feel they are avoiding me.
    Mum is happy and comfortable for the most part and I am determined to maintain the status quo. They have upped her morphine to 80mg so I’m guessing the ascites is getting painful or it could be the tumours themselves that are more painful. I’m not sure.

    #92540
    marions
    Moderator

    Daisy…..I looked up Palliative Care, Australia.

    It clearly states: The Australian and New Zealand Society of Palliative Medicine describes palliative medicine specialists as the ‘general physicians of end of life care, able to coordinate a wide array of palliative treatment options (including chemotherapy, radiotherapy, surgical options, pharmacological options) and psychosocial care, based on a knowledge of the disease, burden versus benefits of palliative therapeutics and the wishes of patient and family’ (ANZSPM 2009:162).

    http://www.aihw.gov.au/palliative-care/medicine-specialists-services/

    Please note: ” burden versus benefits of palliative therapeutics and the wishes of patient and family”
    Based on that, you should be able to speak to the physician re: comfort and possible intervention.

    You have a voice in this, dear Daisy, make sure you are heard and explanations are given.

    Hugs,
    Marion

    #92539
    daisy1
    Spectator

    Thank you, I guess as her tummy is not causing discomfit they are just leaving it alone and concentrating on pain relief. I think the problem with communication is that she is no longer under the care of oncologists, only geriatricians who just deal with end of life comfort.

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