Nurses Corner – Professional opinions

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  • #89669
    karend
    Participant

    Strategies for managing cancer- related distress

    https://conquer-magazine.com/strategies-managing-cancer-related-distress/

    Karen D. BS, RN, CHPN

    #89668
    karend
    Participant

    • This reply was modified 1 year, 3 months ago by  karend.
    #89667
    marions
    Moderator

    While we are very pleased that AG-120 appears to be keeping the tumors stable, unfortunately her symptoms of primarily nausea are not improving. AG-120 does not shrink tumors much, so we don’t anticipate any improvement in the nausea.

    bostonguy……She had been taking olanzapine, started for chemo nausea, which was actually helping a bit. Unfortunately she has some new conduction issues on her EKG, which can be due to olanzapine (and basically all antiemetics), so we had to stop it. The findings were QT prolongation and a new RBBB (right bundle branch block). She had an echo that was normal the same day (though that doesn’t always tell you anything about conduction issues, particularly a RBBB). The EKG issues resolved with cessation of olanzapine. AG-120 may cause QT prolongation according to the consent form, but I think it is more likely due to the olanzapine (or possibly the combination of both).

    She gets some relief from lorazepam (Ativan), but it makes her drowsy and I think she is building a tolerance. Things that haven’t worked for the nausea: ondansetron (Zofran) and prochlorperazine (Compazine). She is resistant to trying new things.

    Now we need to find something that actually helps her nausea. Against all odds I convinced her to try medical marijuana (a strain that was primarily CBD) and it provided some relief. We’re planning to continue with that if she’ll allow it.

    Michelle Pratt FNP-C

    Good evening,

    I have some experience with your issues so let me begin :

    First let me say I am a Nurse Practitioner and a patient. This gives me a very unusual perspective at times so please forgive anything that sounds like medical advice. I will only share my experience.

    So I have a ton of experience with the olanzapine. I work with inpatient psychiatric patients and that is a commonly used antipsychotic. It most definitely will cause the QT prolongation and a first degree AV block. It also causes tons of weight gain and eventually metabolic syndrome. I am sure the appetite increase was an added bonus in consideration of a cancer patient. My experience with olanzapine ( zyprexa) is that the QT prolongation really becomes an issue when there are too many other meds that are contributory also. Either way it is important to stop the olanzapine.

    As far as help as other options I would recommend maybe going with Reglanl ( again the possible QT side effect) but would help with GI motility if she is on any type of narcotic and perhaps has just developed some gastropareisis( nerve damage to the GI tract). I had a similar situation as a side effect of oxcaliplatin. I am doing much better now but was really feeling awful. I also added a proton pump inhibitor such as prilosec or protonix, I too was prescribed ativan and it did work REALLY great so if it still works I suggest using it but maybe at a lesser dose with some of the other GI meds I mentioned above.

    I too was give a sample of CBD oil from my brother. He live is a state where it is legal. I tried it once for sleep and was not over impressed but can see how it would help nausea. If it works then I too agree that you should use what you have. It is important for her to get proper nutrition However you can help her system accomplish that is the bottom line. I would also make sure that simple things like thrush, reflux, ulcer, and so on are not overlooked. Having cancer and going through these treatments are very stressful. This too may be contributing to the nausea. I would highly recommend that you let a clinical pharmacist review your meds to see if there is any other contributing medications that maybe could be removed and then others added in place. I find polypharmacy a big contributor in how I feel and a big issue with some of my patients. Sometimes less is more.

    As far as alternative treatments go I have done both acupuncture and Reikke in the past for overall well being. I do recommend both therapies and think that this may provide some relief if your mother is open to it.

    Not sure if this was helpful but I wanted to share my personal experience with nausea and what I have known to work or not work.

    Good luck and keep me posted.

    Michelle Pratt FNP-C

    #89666
    mvpratt
    Member

    Good afternoon All!

    I have intrahepatic CC and I am a nurse practitioner.

    First I couldn’t agree more to what Karen has shared in regard to ascites, pathophysiology and treatment.

    I do not have problems with ascites at this time but I have over the past year developed a problem with unilateral lower leg swelling and generalized edema after my chemo infusions. I have taken a diuretic combination consisting of lasix and spirolactone. It has helped tremendously when I am swollen overall…..

    I have used that combination( with guidance of GI doctors) in my patients who are struggling with ascites related to cirrhosis or Hepatacellular Carcinoma with success.

    In respect to albumin transfusions I had administered many while working as an ICU nurse. All of these treatments of course were at the discretion of the treating provider.

    In relation to my left lower leg and foot I have discovered that complete rest ( off my foot) combined with lymphatic massage has been extremely successful. I will admit that I have watched YOU TUBE videos for “do your self “lymphatic massage to assess if this would be helpful and it absolutely did. My plan is to see a professional certified in lymphatic massage. For this type of edema compression hose are helpful as long as there is no risk of swelling due to DVT or open weeping areas. Once you have an open/ weeping/ or ulcerated area due to swelling it is important to see a specialist trained in wound care for proper healing. A healthy diet is also helpful this includes watching salt intake.

    From a patient perspective this type of swelling is terribly painful and makes walking difficult. It is important to keep walking. Sitting with legs hanging down in a chair only makes the situation worse. If you notice any redness or warmth on the affected area/ limb it is important to seek medical care.

    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.

    #89665
    marions
    Moderator

    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

    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…i … 056844.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

    #89664
    marions
    Moderator

    Daisy
    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.

    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-ar … ullarticle

    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

    #89663
    marions
    Moderator

    Daisy1Tue, 12 Jul 2016 21:02:23

    IP: 114.76.158.208
    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 sad.

    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-ar … ullarticle

    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

    #89662
    karend
    Participant

    You’re welcome Gavin! Hope all is well across the pond! :-)

    -Karen

    #89661
    gavin
    Moderator

    Thanks for all of that Karen, much appreciated!

    Hugs,

    Gavin

    #89660
    karend
    Participant

    Index of drugs with clickable links for individuals/patients who needs financial prescription assistance. For the insured, uninsured, and everyone in-between. The links provide information on where assistance may be obtained. Many of these drugs will be familiar to those of you who have received or are receiving treatment for CC. The list that I have provided is only a few of the drugs included. View the link to see the full list.

    http://oncpracticemanagement.com/pssguide2016/index-by-drug/

    Neupogen

    Opdivo

    Emend (Aprepitant)

    Gemzar

    Keytruda

    Neulasta

    Taxotere

    Velcade

    Tarceva

    and MANY more

    Karen, RN, CHPN

    #89659
    karend
    Participant

    Hello everyone on the discussion board!

    I wanted to put this link out here for those who may be interested.

    https://www.canceradvocacy.org/cancer-advocacy/survivor-stories/share-your-survivor-story/

    Share your story with the National Coalition for Cancer Survivorship!

    This link allows you to input information on your own personal story of survivorship. I know that many of you may not think of yourselves as “survivors”, but you are because you are working to find the treatments that will keep cancer at bay.

    More and more stories of individuals living with cholangiocarcinoma beyond the initial time frame given by your physicians is becoming a reality, and will continue to become a reality. This is not only the case with cholangiocarcinoma, but with many other cancers as well.

    Many cancers are being treated as a chronic illness and not a terminal illness, and the voices of those living with a chronically managed disease should be heard, because it is YOU and your families that help to change the way in which cancer patients are treated.

    -Karen

    #89658
    karend
    Participant

    • This reply was modified 1 year, 3 months ago by  karend.
    #89657
    karend
    Participant

    Information gathered on biliary drains from major centers of care in the United States, search terms: Biliary drain leakage, biliary drains, biliary drains not attached to drain bag, leakage at insertion site from biliary drains

    Stanford
    https://stanfordhealthcare.org/content/dam/SHC/clinics/interventional-radiology-clinic/docs/biliary-drain-patient-discharge-education.pdf

    Memorial Sloan Kettering (MSKCC)
    https://www.mskcc.org/cancer-care/patient-education/sutured-drainage-catheter

    University of Utah
    http://healthcare.utah.edu/radiology/preparing-appointment/interventional-radiology/biliary-drain-care.php

    The Ohio State University Medical Center
    https://patienteducation.osumc.edu/Documents/BiliaryDrain.pdf

    University of San Francisco (UCSF)
    http://campuslifeservices.ucsf.edu/dmx/PatientEd/SDSUR0320.pdf

    Beth Israel/Harvard
    http://www.bidmc.org/~/media/Files/Centers%20and%20Departments/TransplantInstitute/gallbladder%20or%20biliary%20tube.pdf

    Common finding: If leakage, attach to drain bag. These facilities say to flush daily with saline and to call if excessive leakage.

    -Karen, BSN, RN, CHPN

    #89656
    marions
    Moderator

    You are welcome, dear SGM.
    Karen provided the information for us:
    http://cholangiocarcinoma.org/karen-driskill-rn-chpn/

    Hugs,
    Marion

    #89655
    sgm
    Member

    I really enjoyed relating to this! Thank u for sharing!

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