Hopeseeker,

I'm sorry to hear this.  Perhaps it would be a good idea for the oncologist to make a dietary referral, or consult with a dietician right away.  With a poor appetite and weight loss, it is very possible that your MIL is malnourished which is contributing to the fatigue and edema. 

Ask about pancreatic enzyme supplementation, or adding nutritional drinks or protein to the diet.  It is best to manage nutrition early in this cancer.

Hugs,
Karen

Hi Molly!

Glad to meet you!! I just wanted to pop in and say that I noticed you are in Colonge.  I was in Waconia just the other day, and am in Buffalo at the moment.  We are so close!  smile

Enjoy your day!

-Karen

Hopeseeker,

Thank you so much for updating us!  I'm sorry it took me so long to respond, I've been away for a family wedding in the Midwest. 

I'm glad to see that your MIL's platelets rebounded a bit, and that the oncologist is taking a pro-active approach to monitoring her counts.  Thank goodness as well that her pain is more manageable now! Whew! 

Keeping you all in my thoughts,
Karen

When receiving chemotherapy, have you as a patient ever received education on infiltration or extravasation of chemotherapy agents?  The most important thing a nurse can do to prevent and or minimize tissue damage due to the leakage of chemotherapy into the skin, is to educate the patient who is receiving the drug. 

When individuals receive chemotherapy via a peripheral i.v., frequent assessments should occur to make sure the vein is intact, and the drug is not leaking into the surrounding tissue.  Although much less common, leakage of medication can occur with the use of a port a cath as well, if the needle is too short, becomes dislodged, and so forth. 

Here is an article although directed at nurses, which includes a lot of great patient teaching information.  It is best to be well informed as a patient, so you will know if there is an issue with your intravenous site.

https://cjon.ons.org/sites/default/file … 3PAGE1.pdf

https://www.ncbi.nlm.nih.gov/pubmed/23372097



-Karen

More on this topic.  I found a prospective study from 2016 on the consumption of sugar sweetened beverages and the risk of biliary tract cancer.  AMMF posted the article as a pdf, so the article can be read in its entirety.

Type 2 diabetes and obesity have been associated with an increased risk for bile duct cancer.  The results of this study indicate that the consumption of sugar sweetened beverages (and subsequent elevation in fasting blood glucose levels) may be linked to biliary cancers. 

The study included 70, 832 men and women over a period of 13.2 years.

http://ammf.org.uk/wp-content/uploads/20 … son-.pdf

-Karen

Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update

http://ascopubs.org/doi/full/10.1200/JCO.2016.70.1474

More on palliative care.  This article is from the Journal of Clinical Oncology, published by the American Society of Clinical Oncology (ASCO).

Patients with advanced cancer or a high symptom burden, should have a referral to a palliative care physician in addition to their other physicians as palliative care greatly improves quality of life.

-Karen

Hopeseeker,

Wonderful!  I am so glad that you found the information helpful! smile   I'll keep an eye out for your posting after you MIL's appointment .


-Karen

Updated Guidelines on Chemotherapy Induced Nausea and Vomiting: American Society of Clinical Oncology (ASCO)

http://www.asco.org/practice-guidelines … ines#/9796


-Karen

9

(38 replies, posted in Introductions!)

Hopeful,

First off....HAPPY ANNIVERSARY!!!!  smile

Melinda contacted me regarding information on nutrition and cachexia.  I can email you the articles directly, but I did go ahead and post links to articles in the nutrition section.  They are informative, but rather sensitive in nature. 

-Karen

All,

I am posting links to some articles on cachexia and nutrition in cancer, as this is so very common in certain types of cancers, especially cholangiocarcinoma.

http://ascopubs.org/doi/full/10.1200/JOP.2016.016832

https://www.ncbi.nlm.nih.gov/pubmed/23354431

http://www.tandfonline.com/doi/abs/10.1 … ode=hnuc20

https://www.cancer.org/treatment/surviv … tment.html

If anyone would like the actual articles, I can email them you via the foundation. 

-Karen

Hopeseeker,

In my experience, there are many reasons why pain may not be controlled including patients avoiding taking their breakthrough medications due to unpleasant side effects.  (I see you mentioned this may be the case). This is where open lines of communication between patient/family and provider is key.  It is sometimes hard to talk about pain issues, but this is such an important topic!

Pain management in cancer is very dynamic.  If one regimen does not work, then another must be attempted.  Opioid rotation, or switching from one opioid to another may be necessary, as well as adjustments in dosage. 

http://www.who.int/cancer/palliative/painladder/en/

I frequently see Fentanyl patches used to manage pain, along with an oral opioid for breakthrough pain.  I also see exactly what your MIL is receiving, a long acting opioid and a short acting for breakthrough.  If her current prescribed medications are not dropping her pain below a 5/10 on a 0-10 scale (and she is taking them as prescribed) then it is time for medication adjustment.

One important teaching topic which I discuss with patients and families very often, is to understand that there may still be pain, but to decide on what pain level is tolerable. What I mean by tolerable, is the pain level that the patient is comfortable at, where they are able to function well without being sedated.  For some people this is 1/10, and others it is higher.  It is good to try to understand how the individual feels about their pain, and what their expectations are as far as management.
As a nurse, I am generally concerned if a patient has pain upwards of 4-5 as they may escalate rapidly, so I generally medicate accordingly before the pain is out of control.  It is much more difficult to decrease pain if it has gotten to an 8,9,10/10 then if at a 4 or 5/10. 

http://www.mayoclinic.org/diseases-cond … 45118?pg=1

Regarding concerns about a low platelet count or thrombocytopenia, 45 is low, but I see physicians often wait to transfuse until 15-10,000 (10) or less. (Due to chemotherapy).  Of course, always watch for signs or symptoms of bleeding, i.e., a nose bleed that does not stop, bleeding from the gums after brushing the teeth, blood in the urine or stool, a cut that will not stop bleeding, excessive bruising,  petechiae, or a sudden and severe headache.  If a fall occurs and the patient with a low platelet count bumps their head, bring them to the ER as they should get a CT of the head done.

  Platelet count will rebound between chemotherapy infusions as well as RBCs, hemoglobin/hematocrit.  Sometimes it may take longer though due to many factors. 

Here is some info on thrombocytopenia (low platelets)

http://news.cancerconnect.com/thrombocy … -overview/

http://www.cancer.net/navigating-cancer … ocytopenia

Another issue with platelets (and blood for that matter), is that there is a nationwide shortage of blood products.  Blood banks and physicians are very judicious in their use of blood and blood products, and transfusions do not come without risk as well.  Benefit versus harm must always be taken into consideration. 

https://www.medpagetoday.com/hospitalba … tice/66488

I hope this information helps you!  I know it is a lot! 

-Karen

Melinda,

I absolutely LOVE this picture!  Thank you for sharing!!! 

big_smile  Karen

Jonas,

My thoughts are with you all, and I am deeply saddened that you have had to experience this. 

Thank you for sharing Myrna with us. 

Peace and blessings,
Karen

Jonas,

My heart is breaking for you and your family for all of the sadness and grief you must all be feeling.  I am so sorry that this is happening.  I hope that Myrna will improve over night after her stent exchange and that she is resting peacefully.

Is your family taking turns staying with Myrna over night?

Hugs,
Karen

Hi Jonas,

I am really thankful for your response, and to hear that Myrna has responded well to supportive treatments.  The human spirit is awe-inspiring to me, and it must be so wonderful to see Myrna more alert.   

There are many postings on this forum which discuss single agent treatment with Gemzar, and from my knowledge, it is much easier to tolerate for some patients than the Cisplatin. 

I know that every day will be a challenge, but I hope that this forum is able to lend you some support even if virtually. 

-Karen

Sometimes step 3 to 10 comes rapidly, and sometimes is does not.  We cannot predict an individual's lifespan.  One of THE most difficult things working in oncology is the inability to prognosticate perfectly, because no one can.  I am of course not there to see what is happening, but I do not think that the physicians are trying to hide anything in anyway.  When it comes to having difficult discussions with patients/families, there is no script with which to follow. 

Jonas,  Myrna sounds very sick, but there is absolutely no harm in getting her records together and getting second/third/fourth opinions because you never know what you will hear.  You will have the peace of mind knowing you have done all you can as a brother/physician as well.  If Myrna is afraid to receive hospice services, which is common, please do consider palliative care.  As she is at MD Anderson, ask for consults from pain specialists for appropriate dosing, which as you know, will need continual assessment.  Request a palliative care physician if this service is available so that they are a part of your sister's team.  She sounds very symptomatic, and palliative care specialists work hard to manage symptoms to avoid hospitalizations due to issues such as the dehydration induced by treatment/dysphagia/dehydration. 

I am speaking only as an experienced oncology nurse, but do be cautious and carefully consider chemotherapy if your sister's performance status is poor.  Chemotherapy absolutely can do more harm than good, and any oncologist worth his salt will tell you this as well.  Gemzar/Cisplatin is however, the standard of care treatment for this cancer.  Oncologists offer this because the current research supports this treatment.  Another thought, if Myrna rebounds, think about other agents that she could have which are perhaps less taxing on her, other chemotherapeutics, or oral agents.  Ask the oncologist.  MD Anderson is one of the top hospitals for CCA in the nation, I have no doubt that they would be open to your educated questions. 

Is she doing better after having fluids/etc. in the ICU?  Did her pressures come up?  Is she more awake?  I do so hope the admission helped her.  I am thinking of you all. 

-Karen

The information provided is not intended nor implied to be taken as medical advice.  Please consult your health care provider if you have questions or concerns.

Diane,

I'm so sorry to hear of the struggles your husband, and well as you, are going through.  I understand the frustration which comes from the constant barrage of issues with a cancer diagnosis.  It is frightening, and extremely disconcerting when it is happening to you.

Coagulopathies, or issues with clotting...either the propensity to develop clots or the inability for the blood to clot effectively, is as you said, common in cancer patients, but more so in certain cancers.  Not all cancer patients develop DVTs (deep vein thrombosis) or P.E.s (pulmonary emboli), it is not an issue across the board.  I do not routinely educate patients about symptoms of pulmonary emboli, but all hospitals (all to my knowledge) do educate patients/families about DVTs upon admittance to an inpatient bed.
  I'm wondering if your husband had chemotherapy just prior, or within a week or so before the P.E.s developed, leading to neutropenia and the subsequent pneumonia ---------> P.E.s triggered from infection/inflammation? This can happen as well, but does not occur in every individual.

DVTs can develop in the deep veins of the legs, break off and form pulmonary emboli within the lungs.  Individuals are at risk for DVTs when they have long periods of inactivity, have recently had surgery, have certain cancers, and so on.  5000 U heparin injections are an almost universal medication given to patients who are at risk for DVTs and admitted to hospitals.   I give almost every patient I care for daily Heparin injections for prophylaxis (as long as it is not contraindicated) which is discontinued upon discharge from the hospital.

There is always room for improvement though, even at the City of Hope, and I am so glad that you shared your frustration here.  I certainly am hearing you, and will work to improve the way in which I educate patients who are at risk for DVTs/P.E. without being overly ominous.  One thing I have noticed often as not only someone who teaches patients/families but has been on the receiving end of this teaching, is that there is A LOT of information provided, too much sometimes.  It helps me to write down everything in a notebook, or keep notes on my phone/tablet for the doctors or nurses.  I encourage questions when I am teaching, but I also asked a lot when I was in the position of caregiver and patient.
Look through every bit of information provided to your husband during hospital admissions, or through outpatient appointments with the oncologists/Nurse practitioners and if something is confusing, bug someone at the providers office to help you. 

You were so right to call the nurse line when your husband was having breathing difficulties, and I'm so glad that he was treated in a timely manner.  P.E.s are very scary. 

Thinking of you both,
KarenD, BSN, RN, CHPN

All Information provided is not meant to be a substitute for professional medical advice and is merely my opinion.  Please consult with your provider if you have questions or concerns.

Jjgunny,

I am very sorry that Myrna has been readmitted, but do so hope that she is resting comfortably. 

Everyone on this discussion board truly understands the fear, sadness, and shock which comes from the rapidity of this cancer, and how your family (and you) must be struggling to make sense of it all. 
I personally am so glad that you are here though, and are sharing Myrna's story with us. 

Cisplatin can be so harsh, Myrna may just need a bit more time to recover along with inpatient support.  It will be a useful time as well to discuss the current plan, and be together as a family with her.  My sincere hope is that she will rebound with fluids so that she can be discharged.

Thinking of you all and keeping my fingers crossed,
Karen

How to find health care information that is accurate and reliable

It is important to remember when doing your own research on this cancer or any other medical issue, it is good practice to turn to reliable and accurate information as a basis for your health care decisions in addition to your physician's input and care.  General web searches may provide access to information which is accurate, but more likely than not lead individuals to websites or people/groups who claim to have performed real research on their chosen topics but in fact, did not.

Read studies, learn how to decipher the scientific language, or use sources which are accurate and written in non-medical language such as http://www.medscape.com/

Here are some websites which provide information which is reliable, accurate, and up to date.

http://www.jointcommission.org/assets/1 … nt_101.pdf

How do you find  information which is believable/reliable when there is so much information out there? 

Here are some tips from UCSF on how to find accurate information when doing your own research.

https://www.ucsfhealth.org/education/ev … formation/

When I do research on a medical topic I will only go to certain places to find this information and will look to see how old the information is.  Anything over five years old is less desirable than more recent studies as everything in the medical world is constantly being updated/is changing.  Additionally I will look to see who sponsors the website.  Is it a .org, .edu, or .gov?  Websites with these addresses are sponsored by non-profits, universities, or the government and are therefore more reliable than a .com.
Does the website have editors, or is it written by one person?  Does the website link their claims to actual studies or do they use testimonials only?  Testimonials do not prove that their product or idea works.  Please think about these things when reading information on the web. 

Here are some of the places I go for information:

https://www.nih.gov/

https://www.cancer.gov/

https://www.ebscohost.com/nursing/produ … l-complete

http://www.sciencedirect.com/

http://www.esmo.org/

https://www.asco.org/

https://www.nccn.org/

-Karen BSN, RN, CHPN

Julie,

I love, love, LOVE the cake! My youngest son would flip if he saw it.  Last year he asked me for a volcano cake...that was a doozy to put together!

Did you use fondant for the cutouts?  Beautiful piping details too!

-Karen

21

(17 replies, posted in Survivor Stories -->[NEW]<--)

I LOVED reading your posts today Michelle! 

Sending you a big hug from New York

-Karen

22

(7 replies, posted in General Discussion)

No words....my heart is breaking..


-Karen

23

(4 replies, posted in Pain Management)

Fay,

The pain specialists may be thinking of switching to Methadone and steroids as they are aware that your mom isn't taking her breakthrough meds, or they feel she is developing tolerance to the current regimen. However, this sounds like more of a patient education situation, than inadequate pain control.  If her pain is tolerable with her current long-acting  and short acting oxy, then I would think they might keep her on her current regimen. 

Do you think there may be other reasons beyond fear of "addiction" that you mother may have?  Is she struggling with nausea, constipation, forgetfulness, or other symptoms?  Could she perhaps be avoiding the short acting med as she is afraid or scared, not of addiction, but of something else? Could you or another trusted family member have a heart to heart with her, asking her what is most important to her right now?  I remember you saying how she was able to go out to lunch with her friends recently.  Is this something that brings her joy?  If she is in a lot of pain, it may be difficult for her to do these activities, and perhaps then she will mull it over and decide to try the short acting meds again. 

http://www.cancercare.org/publications/ … tting_help

As you know, she will not develop addiction, tolerance yes.  From my experience, pain medication may need to be increased as needed as patients develop tolerance to a drug.  For individuals with cancer pain, this is acceptable and common.  Pain medication will need to be increased or rotated as cancer progresses. 

The reason for my asking about the Fentanyl patch, is because this is a method of pain control I see prescribed frequently.  Pain must be controlled though prior to switching, but this may be useful in the future if she has difficulty eating/drinking or has nausea.  What does the oncologist think?  Do the pain providers have a lot of experience with progressive cancer pain, or do they specialize more in chronic pain syndromes?

Providers generally start transdermal Fentanyl at a low dose of 12.5 mcg, then 25, 75, 100, 150 mcg, but it depends as well on the previous dose of oral long acting drug that was given. 

I am sorry to hear her pain has increased.   I was so happy to hear she was feeling better for awhile, and do so hope she finds relief again soon!

-Karen

THIS INFORMATION IS NOT INTENDED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE.  PLEASE CONSULT YOUR PHYSICIAN OR HEALTH CARE PROVIDER IF YOU HAVE ANY QUESTIONS OR CONCERNS

FMLA is a federal law put in place to allow for covered patients and certain family members/caregivers to take job protected unpaid leave from work. 

The leave is generally 12 weeks, or 26 weeks for family of a service-member.

Knowing about this law is important for individuals/families who are dealing with a serious illness. 

Informational step by step guide to FMLA, how it works, how to request leave, and so forth.

https://www.dol.gov/whd/fmla/employeeguide.pdf

https://www.dol.gov/whd/fmla/

Information on workplace rights

http://www.patientadvocate.org/resources.php?p=128

25

(4 replies, posted in Pain Management)

Hello Fay,

I have given Methadone quite often, but generally for chronic pain patients such as those with Sickle Cell Disease.  I do however recall giving it recently to a patient with cancer.

Here is the latest from the American Academy of Pain Medicine re: Methadone

http://www.painmed.org/files/methadone- … making.pdf

Here are the NCCN guidelines for pain management in adult cancer patients.  https://www.nccn.org/professionals/phys … supportive 

If you are unable to view these guidelines, I can email you the Pdf which I downloaded.

From my knowledge, Methadone can be useful in neuropathic pain.  As I recall, this was perhaps the kind of pain your mom has been experiencing?  Deep somatic pain/visceral pain? Is her long acting oxy and break-through oxy not keeping her pain below a 5/10?  Have they discussed transdermal pain medication such as fentanyl, AND break-through oxy?

-Karen

THIS INFORMATION IS NOT TO BE TAKEN AS MEDICAL ADVICE AND IS PURELY MY OPINION. PLEASE CONSULT YOUR PHYSICIAN OR PROVIDER IF YOU HAVE ANY QUESTIONS OR CONCERNS