1

(5 replies, posted in Introductions!)

Hello Lou!

I'm so sorry to hear that your wife is experiencing so much nausea.  As you posted this message on Tuesday, I'm hoping perhaps that she has seen her oncologist since then and discussed her recurrent nausea and found some relief. 

In looking over your message and thinking about a few things, the first question I had is concerning the medications that she takes for her nausea before chemotherapy, the day of chemotherapy, and for the days following her infusion. 
One of the medications she is receiving, Cisplatin, is referred to as a "highly emetogenic" agent, or in layman's terms, it causes severe nausea.  There are clear guidelines on the management of chemotherapy induced nausea and vomiting for medications such as Cisplatin, and it wouldn't hurt to ask if your wife is receiving the medications as recommended.   

If we were to look at days 1-4 of chemotherapy, she should be receiving medication like Emend (Aprepitant), Zofran, Dexamethasone, etc. The Emend is a pill and should be taken before chemotherapy and then orally on day 2 and 3 along with Decadron (Dexamethasone) i.v. or by mouth on days 2, 3, and 4. 

The guidelines are actually quite lengthy, so I only included the first top section of the National Comprehensive Cancer Network (NCCN) antiemesis guidelines from 2017.   

https://NCCN.org

For the professional guidelines an account is needed, but is free to set up. 

https://www.nccn.org/patients/resources … ausea.aspx
There may be other reasons for her persistent nausea as well including the effects of the tumor.  Here is a great resource for you to look through from the National Cancer Institute on nausea and vomiting in cancer.

https://www.cancer.gov/about-cancer/tre … nausea-pdq

This can be an issue that will require a lot of trial and error, changing of medications, working to find foods/beverages that are easily digested, etc.  I have also seen some good success with the use of peppermint oil on a cotton ball in a little dish, and having an individual gently inhale the aroma of this.  Yes I know it sounds silly, but I have seen it work for some individuals who were struggling with ongoing nausea due to liver, colon, and endometrial cancers...or cancers that are prone to causing nausea. 

It is low-tech, but worth a try but do always ask her oncologist or oncology nurse before trying anything new, and do not use this if your wife as an allergy to peppermint.

http://ecancer.org/journal/7/full/290-a … miting.php

Does the facility where your wife is being treated have palliative care physicians on staff?  If so, it might be a good idea to see if someone from their service could be a consult and work with the oncologist to treat her nausea.
Palliative care specialists are not hospice doctors, but practitioners who specialize in symptom management on a short term or long term basis.  This physician team (Oncologist/Palliative care physician) could work together to trial different medications, or work with a nutritionist, manage pain medications, constipation, etc.  They work wonders and are a great asset when struggling with persistent and distressing symptoms. 

Lou, I will be thinking of the both of you and keeping good thoughts and hope for relief of the nausea.  Please let us know how you are both doing.

-Karen

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

2

(8 replies, posted in Pain Management)

Fay,

Here is an article that discusses visceral pain management, which you may find helpful. 


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348642/

-Karen

3

(8 replies, posted in Pain Management)

Fay,

I wanted to add a little bit more information to the other great postings on this topic.

It appears that your mother's physician is prescribing per WHO analgesic ladder guidelines, however, she is only on long and short acting oral Dilaudid as the opioid.  Your mother is on the highest step- step three.  She is not taking an NSAID though, but Tylenol.  The ladder at step 3 is an NSAID, opioid, and an adjuvant (i.e. Neurontin). 

As her pain level is severe at times, I would have her see her prescribing physician ASAP for pain medication adjustment, or bring her to the hospital as Marion suggested.  With cancer pain, there should be frequent assessment and reassessment of the patient's pain experience and the adjustment of medications accordingly.  This may include increasing dosages, or changing opioids. 

Make sure she is on a bowel regimen too (stimulant laxative and stool softener) with the heavy doses of opioids she is on as constipation can happen quickly, which can bring nausea and obstruction.

 
I would ask the physician if she should perhaps be using a fentanyl patch, along with the long acting oral opioid and a short acting oral opioid for break through pain. 

Lidocaine-
In my practice, I have not seen much relief from the use of lidocaine patches for severe cancer pain, and they can bunch up/stick on clothing/come off easily.  This is not to say I NEVER see them being prescribed, but it is quite infrequent and seemingly used only for those who have manageable pain levels  at around 5 or less.

Neuropathic pain-
If you feel that her pain is neuropathic, then tricyclic antidepressants are another option instead of the Neurontin.  Corticosteroids are used to treat liver mets or visceral pain too.   

I'm so sorry your mom is having so much pain, and I will be thinking of you both.

-Karen

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

A colleague of mine passed this information on to me, and I thought to share.  This is an organization with summer camps across the country for children who have a parent affected by cancer. 

The camps are generally 1 week in length and are free. 

The camps are run by college student leaders who are extensively trained, and supported by medical and mental health staff.   Applications open in January of each year. 

http://campkesem.org/

-Karen

Beatriz,

What a kind thing for you to say, thank you! :-)

-Karen

Hi Megan,

I'm so sorry to hear about your mom, and hope that she starts feeling better soon!

This is just a quick response right now so you aren't having to wait on me too long. 

1. Did the hospital rule out pancreatitis? 2. Are they doing daily lab work?  (CBC, CMP) 3. Is your mom still nauseated?  4. Is her belly swollen or tender?  5. Does she have a fever?  6. Is her blood pressure ok?
7. Is she having bowel movements and urinating without difficulty?   
8. How does she describe her pain?  9. Are the physicians discussing on a daily basis what their next step is, or what plan they have for your mom?

  If they are not giving clear information, or you, your mom, and family feel distressed with what is happening, hold a physician/family meeting.  The physicians should be writing daily notes in the chart which always end with what they have seen that day, and what they are planning to do now, tomorrow, and so on.  This information should be shared and understood by everyone so that there is a clear understanding of the plan of care.  Additionally, ruling out the source of the pain is first and foremost, but also aggressive pain management is imperative.  Insist on this.

I hope this helps a little!

-Karen

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

Individuals suffering from "chemo-brain" who participated in a brain training program similar to an online game, found to have statistically significant improvement in cognition.  Additionally, participants exhibited less anxiety, depression, and fatigue.   

http://www.medgadget.com/2016/11/game-l … brain.html

http://www.oncologynurseadvisor.com/sid … le/570331/

-Karen

Here is some more information and resources on biliary stents and drains for reference.

http://www.bsir.org/patients/biliary-dr … -stenting/

Biliary drain tube

http://www.bsir.org/static/uploads/images/_Members/_administrator/Image/fig2.jpg


Metal mesh biliary stent (to keep the duct open)

http://www.bsir.org/static/uploads/images/_Members/_administrator/Image/fig4.jpg

Metal stents in place
image from Johns Hopkins

https://gi.jhsps.org/Upload/200803061153_55182_000.jpg

Plastic stent

http://www.bsir.org/static/uploads/images/_Members/_administrator/Image/fig3.jpg

Image from medelec (device manufacturer)

http://medelec.net/wpimages/wp69930f65_06.png

Biliary tree anatomy
Image from NVCC
http://blogs.nvcc.edu/rkeith/files/2012/02/stones.png

Drain bag unattached
Image from Redi-tech, medical device manufacturer

http://www.redi-tech.com/wp-content/uploads/2010/06/draianage-bag1.jpg

Flushing port and stop-cock on drain (outside of the body)
Image from MSKCC

http://www.mskcc.org/sites/www.mskcc.org/files/node/[nid]/images/biliary5_0.png

9

(2 replies, posted in General Discussion)

Minzzi,

I am sorry to hear that your husband is having so much pain/leaking with his drain.  I'm sure this is very distressing!

Although I do not work in radiology, I have worked with biliary drains and will hopefully help you in some way with a little information.

Here is an illustration of a biliary drain from Johns Hopkins, to give you an idea of where the tube is placed.

http://www.hopkinsmedicine.org/sebin/d/i/Pont_Percutaneous_Approach.jpg

1.  If your husband is experiencing any nausea/vomiting, new abdominal fullness, fever, "flu-like" feelings, jaundice, or severe pain, bring him to the emergency department. 
Pain should never be severe from a biliary drain.

2. The biliary drain should be secured at the place where it comes out of the skin.  This should be either with a surgical loop/stich, or a securing device.  It should not be migrating in an out of the body, or should I say, I have never in my experience understood these drains to not be secured.

Here is an image from Memorial Sloan Kettering showing you the drain set up with dressing, securing device, and drain bag.   

https://www.mskcc.org/sites/default/files/node/20233/inline_images/biliary11_0.png

3. Leakage from around the tube is not unusual, I have seen this many times.  However, leakage should be reported to the physician/radiologist.  Dressing changes may have to be frequent to absorb any leakage.

4. The drainage/flushing issues, unusual drainage/bloody/yellow, I cannot say why this is happening.  The doctor who placed the drain tube must thoroughly examine the tube placement.  Be insistent if something seems wrong.  Flushing the tube should not be difficult. 

Tubes can get clogged, and drain exchanges can be frequent. 

Here is a link to Memorial Sloan Kettering's info on biliary drains.  It is quite good. 
https://www.mskcc.org/cancer-care/patie … e-catheter

Here is a YouTube video on biliary drains as well that should be helpful.
http://www.bing.com/videos/search?q=Bil … ORM=VRDGAR


I hope that this information helps you, or that perhaps someone with a drain will have some information to share.   

I do feel though that pain is a red flag, and should be investigated, especially with the issues that you mentioned. 

-Karen BS, RN, CHPN

Please consult your physicians with any concerns or questions you may have.  The information that I provide is my personal opinion and is not to be taken as medical advice

10

(3 replies, posted in Pain Management)

Joviony,

I'm so sorry that your wife is having discomfort around her port site!  I hope that she starts feeling better soon.

I wanted to add to Mary's post which has such great advice, and mention that the nurses should be able to flush the port easily, and withdraw blood without difficulty.  If the nurses are not able to get blood "return", or have difficulty pushing saline in, fluids, etc. then this should be mentioned to the oncologist.  Sometimes a procedure called a portogram is performed by a radiologist to inspect the port for functionality.  This is generally done if the port seems to be malfunctioning. 

If there is any burning, stinging, or outright pain during or after chemotherapy administration though, this should be investigated promptly.

Good luck!

Karen D. BS,RN,CHPN

This post is not to be taken for medical advice, and is merely my opinion.  Please always consult with your physician if you have concerns. 

Ali,

Regarding the ABC-02 trial,

Bridgewater, et al. published a really wonderful paper on cholangio in 2014.  I have referenced it many times in projects I have worked on.

Regarding ABC-02 trial standard of care chemo (this is Gemzar (Gebcitabine) and Cisplatin.

Gemcitabine and Cisplatin systemic therapy is standard of care for non-resectable disease if the patient has a good performance status with a median survival of 11.2 months versus 7.7 (Bridgewater et al.,2014).

Here is the citation:
Bridgewater, J., Galle, P., Khan, S., Llovet, J., Park, J.W., Patel, T., Pawlik, T., & Gores, G. (2014). Guidelines for the diagnosis and management of intrahepatic cholangiocarcinoma. Journal of Hepatology, 60(6), 1268-1289. doi.org/10.1016/j.jhep.2014.01.021

I hope this helps you. 

-Karen

A lot of great information (including chemotherapy terms) about chemotherapy.  Although your nurses and your oncologist will give you a lot of information before you start chemo, it is still a confusing and sometimes anxiety provoking experience. 

Reading the information on this website will help to make sense of many questions you may be having, such as:

1. How is your chemotherapy given?

2. What is a nadir?

3. How do I know if my chemotherapy is working?

4. What kind of side effects will I have?

5. Why do the nurses have to take blood so often? (This question is answered in the "nadir" link).

6.  How do the oncologists know that this chemotherapy will work for my cancer?

http://chemocare.com/chemotherapy/what- … ocols.aspx

-Karen

Here is some additional information that may help in understanding chemotherapy orders: 
This link discusses how chemotherapy orders should be written to ensure safety.

https://ctep.cancer.gov/protocolDevelop … lature.htm

Here are some snippets of info from just one article that talks about dose reduction and dose delays and the reasoning behind the changes to the protocols. Although this article is from 2000, it has good information in it.  I have also read many articles that discuss the effect of dose reducing or dose delaying chemotherapy and how this impacts the treatment of the cancer itself, i.e. poorer outcomes or disease free periods, or progression of the cancer.  I feel though that providers are of course looking at the person as a whole, and you can’t give a full dose of chemotherapy if the patient’s body cannot tolerate it.  Does this mean that a poorer outcome, or cancer progression may be the result?  Possibly, but no one would want to give the full dose of chemotherapy to an individual to then have their kidneys stop working, or for their bone marrow to fail.  I give oncologists a lot of credit…they are very skilled clinicians  in deciding how best tosafely treat each individual person. 

There are however a lot of supportive treatments that are given with chemotherapy to help the patient’s body to cope such as Neupogen to stimulate the bone marrow to produce white blood cells faster, or transfusions of packed red blood cells (RBCs) or Platelets.

http://www.cancernetwork.com/review-art … emotherapy

"Treatment Delays

During the use of combination chemotherapeutic regimens for nonmyeloid malignancies, the standard response of physicians to the development of thrombocytopenia is dose reductions and/or delayed administration of the next cycle of chemotherapy (Table 2). This is also the response of treating physicians for patients receiving combined-modality therapy (chemotherapy and radiation therapy). In the study conducted by MacManus et al, thrombocytopenia forced the interruption of radiation therapy for 3 days or more in 98% (44/45) of patients, 27% (12/45) of whom had at least one measurement of platelet count < 25,000/µL.[2] In addition to treatment interruption, the planned radiation dose was reduced by > 10% in 51% of the cases, vs 11% of controls (radiation therapy only).
During myelosuppressive chemotherapy, the administration of subsequent cycles is routinely delayed until the platelet count has recovered to 100,000/µL, as mandated by almost all of the protocols for investigations of chemotherapeutic regimens seen in Table 2.[5,11,12,24-27] In these studies, treatment was delayed for 1 to 4 weeks if this platelet threshold was not reached.

Dose Reductions

The practice of reducing doses in response to prolonged myelosuppression is demonstrated in the studies in Table 2. In the event of slow platelet recovery[11,24,26,27,29,30] or persistence of platelet counts < 50,000/µL [11,24,30-32] or even 75,000/µL to 100,000/µL,[22,27] chemotherapy was significantly deescalated, often by reducing drug doses by up to 50%
Thrombocytopenia in conjunction with neutropenia led to dose reductions in most patients who received more than three cycles of therapy".


-Karen

All information provided is my opinion only and is not to be used as medical advice.  Please always consult with your prescribing physician for medical questions or issues.

Alikemal,

I should preface this post with the understanding that although a study may come out with a chemotherapy regimen for a specific cancer, there is much room for interpretation.  Every oncologist will order differently, and this is not something that I can expound on as I am an oncology nurse.  Hospitals also develop their own protocols.
In looking through the chemotherapy orders (or your very organized sheet!) what I see first is the protocol.  This protocol appears to be roughly following the standard of care for biliary cancer based off the ABC-02 trial from 2010. Now I will go through the whole order sheet.  I will attach the links to the New England Journal of Medicine (NEJM) where the ABC-02 study was published, and also Cancer Therapy Advisor so you may see where I sourced this information for you.

1.    The orders state that the chemotherapy administration will be on 1 and 8, every 21 days. (This would be one “cycle”).  The ABC-02 trial was to give gemcitabine/cisplatin on days 1 and 8 every 3 weeks (so roughly 21 days).  This treatment is to be given in 4 cycles per the study.

2.    The order sheet says Cisplatin 30 mg/m2 and Gemcitabine 1000 mg/m2.  The ABC-02 study and the Cancer Therapy Advisor list the doses as Cisplatin 25 mg/m2 and Gemcitabine 1000 mg/m2.  Why the slight difference for your order sheet?  Perhaps this is a case where the oncologist is ordering based on their knowledge base.  You could always ask.

3.    Numbers 5 and 6 in the list on the order sheet- Cisplatin 40 mg- The cisplatin orders state that this dose is to be 30 mg/m2.  BSA is 1.48/m2 so 30mg x 1.48= 44.4 mg.  Whoever mixed the chemo did 40 mg of Cisplatin even though the dose is technically 44.4.  They chose to round down which I will explain in a bit.  Gemcitabine 1000 mg/m2.  1.48 x 1000 = 1,480 mg.  The given dose though is 1100 mg.  Here again, the dose was decreased.

4.    Numbers 1, 2, 3, 4.   1. Dekort I believe must be Decadron, a steroid and a pre-medication to prevent adverse reactions from the chemotherapy.  16 mg looks right to me.  2. My facility happens to give Ondansetron (Zofran) at 8 mg to prevent nausea (another premedication) 3. Benison or Avil, I have not heard of.  As it says “antihistamine” on the sheet, I’m guessing this must be something like Benadryl, which I have given as a premedication for many things, including chemotherapy.  I cannot remember giving this before Gemcitabine/Cisplatin, but I’m not saying this is wrong for it to be given.  4.  Lasix 20 mg.  Lasix (Furosemide) is a diuretic to help the body to diurese.  The 1000 ml of saline is a kidney protectant as the Cisplatin is toxic to the kidneys.  I have not given Lasix with Cisplatin before, but I certainly have pre and post hydrated with saline.  Again, this must be oncologist specific per their knowledge base.

5.    Number 7, Emend.  This medication is an NK-1 antagonist, or a heavy duty anti-nausea medication that has been shown in studies to work very well to fight the kind of nausea that can occur with Cisplatin, which can be very severe.   Cisplatin is what we call a “highly emetogenic” chemotherapy so precautions such as the administration of Emend will help to ward off this nausea/vomiting.

Now I will explain about dose reduction and speculate on why the entire 1-7 were given the first time, and not the second.  Dose reduction is done for the safety of the patient.  Your mother is 70, and perhaps she has some other illnesses (diabetes, heart disease, etc.).  She may have underlying kidney or liver function issues…I do not know what her lab work would reveal or her health history.  Oncologists will dose reduce to treat, but do as little harm to the body, which I suspect happened in this case.  This is again why your mother most likely received Gemcitabine alone without the Cisplatin.  Cisplatin can be especially harsh and cause the kidneys to struggle, and greatly affect the bone marrow and resultant lab results. (Platelet count can drop markedly, as well as the white blood cell count (WBC), hemoglobin/hematocrit, neutrophils, etc.).   Neuropathy can occur too with the Cisplatin, and this will cause an oncologist to dose reduce or discontinue. 

My advice would be to ask the oncologist any questions you may have, and look through the resources that I provide links for.  Again, every oncologist orders differently and the information I have provided is my opinion based on experience, but I am not a physician. 
Hopefully this will ease your mind, as it appears that the orders are very similar to the current standard of care treatment with some minor changes.

-Karen D.

http://www.nejm.org/doi/full/10.1056/NE … Discussion

http://www.cancertherapyadvisor.com/gas … 7cea06e3aa

15

(17 replies, posted in General Discussion)

I'm so excited that I finally get to meet you Lainy!  I remember being in Arizona for the foundation one year (maybe 2012?)  and we missed each other, so I can't wait to give you a hug in SLC.  :-)

Gavin-  Next year !!! and Michelle, I can't wait to see you as well!!!

Karen

Strategies for managing cancer- related distress

https://conquer-magazine.com/strategies … -distress/

Karen D. BS, RN, CHPN

Gator Jake,

I looked through your old postings and is it MUSC where you are being treated?  This facility appears to have a "skin team" in place.  A skin team is generally composed of wound ostomy continence certified registered nurses who are highly skilled in all issues revolving around skin care/wounds/drains.  Perhaps your interventional radiology team could arrange for you to be seen by this group when you are there for an appointment? It would be worth asking. 

-Karen

All,

I have discovered that the links within the previous post on drainage care are old and no longer work.  They are now updated with the new links, minus the University of Washington as it is no longer available, and I have added the University of Utah.

In addition, interventional radiology should be aware of excessive leakage from the drain insertion site as they will need to assure that the tubing is patent.  If all is well and there is continued leakage, I have often times had wound ostomy nurses secure a bag around the insertion site to prevent bile from continually irritating the surrounding skin.   You want to keep the skin clean and dry or it will become quite sore after time. 



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/ … cation.pdf

Memorial Sloan Kettering (MSKCC)
https://www.mskcc.org/cancer-care/patie … e-catheter

University of Utah
http://healthcare.utah.edu/radiology/pr … n-care.php

The Ohio State University Medical Center
https://patienteducation.osumc.edu/Docu … yDrain.pdf

University of San Francisco (UCSF)
http://campuslifeservices.ucsf.edu/dmx/ … UR0320.pdf

Beth Israel/Harvard
http://www.bidmc.org/~/media/Files/Cent … 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

I have run across a newer study published by BMC Cancer in November, 2015 on the link between gallstones and cholangiocarcinoma.  I thought to share as I found it interesting, and reminded me of this post/question.

This meta-analysis conducted by Cai et al., (2015) found that there was an increased risk for intrahepatic cholangiocarcinoma (ICC) in the presence of bile duct stones, although the researchers only speculate as  to why this is the case. (Chronic inflammation, metabolic syndromes such as diabetes, etc.).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629290/


"As far as we know, this is the first systematic review and meta-analysis of studies evaluating the association between the risk of developing ICC and pre-existing choledocholithiasis and cholecystolithiasis, and our study may be of value for clinical practice. The prognosis of ICC is extremely poor, so early diagnosis and timely treatment of this highly malignant disease are important. Our evidence-based study showed that patients with a history of cholelithiasis, especially choledocholithiasis, are at high risk of developing ICC. Therefore, routine follow-up for these patients is critical for the early diagnosis of ICC. Early diagnosis and timely treatment can be expected to lead to better outcomes for ICC patients" (Cai, et al., 2015, p. 6).


-Karen D., BSN, RN, CHPN

To add to Michelle's great post:

Essential oils of spearmint and peppermint have been used with success in randomized controlled trials.  In fact, I have witnessed a decrease in nausea in some of my own patients who had intractable nausea and were given aromatherapy with peppermint.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3562057/

I've also included a study on medical marijuana and nausea.  Currently I work in a large community hospital which is north of New York City and I have not generally seen the use of medical marijuana in those whom I care for, nor the prescribing of synthetic THC within the inpatient setting.  When I lived and worked in other regions such as the Pacific NW, this type of medication was used with much more frequency.   On a personal note, my mother in law used Marinol when her nausea became severe.  She was able to eat a few small meals that she found pleasurable, which greatly added to her quality of life at the time.  She did however, dislike the drowsy feeling that she personally experienced when taking this medication.

http://oncology.jamanetwork.com/mobile/ … id=2504173


Another anti-nausea aid that can be used is ginger.  Uptodate discusses it's use in chemotherapy induced nausea and vomiting (CINV).

https://www.uptodate.com/contents/preve … s#H2134987

-Karen D. BSN, RN, CHPN

Here is an excellent and easy to understand, patient handout from the European Society for Medical Oncology (ESMO) on skin reactions and issues related to EGFR inhibitors.  (Tarceva, Vectibix, Iressa, Erbitux, and Tyverb). 

This handout outlines what these reactions may look like, and what to do and not do to care for your skin. 

http://oncologypro.esmo.org/content/dow … i-EGFR.pdf

Pictures of what these skin reactions may look like:

http://oncologypro.esmo.org/Guidelines- … in-Changes

Karen D., BSN, RN, CHPN

22

(17 replies, posted in General Discussion)

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

23

(17 replies, posted in General Discussion)

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

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

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(17 replies, posted in General Discussion)

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

https://thedianerehmshow.org/audio/#/sh … 380/@00:00

A poignant interview with Amy Berman, a 51 year old woman diagnosed with terminal cancer.

Karen D.