Palliative Care in Oncology Symposium
Patient-Centered Care Across the Cancer Continuum

October 24-25, 2014
Boston, MA


Hello everyone on our discussion board!  Today I am attending the inaugural symposium of palliative care in oncology with another advocate, Heidi. We are attending to our booth,  distributing information about our foundation, and networking with healthcare providers.  We are also attending sessions to gather information about the latest research in palliative care.

The first session we attended was entitled, The Three Ms of Symptom Science- Mechanisms, Measurement, and Management.

Mechanisms driving cancer pain was the initial topic of discussion, presented by Patrick W. Mantyh, PhD, JD from The University of Arizona.  Dr. Mantyh stated that the main goal of his work was translation of research from lab based to human based clinical trials on cancer pain.

The main type of pain that Dr. Mantyh discussed was bone pain.  This is a very common type of pain for cancer patients due to various factors including bone metastasis.  He explained through his presentation that nerve fibers undergo a rapid growth within the tumor that is abnormal.  These neuromas, or nerve tumors in bone can spontaneously discharge (suddenly send out a nerve impulse) unrelated to movement of any kind which can cause sudden bone pain.  From my understanding, Nerve Growth Factor (NGF) involved in the growth of these neuromas is driven from stromal cells (http://www.cancer.gov/dictionary?cdrid=559134) not just from bone cancers but from other cancers as well.

The main points gleaned from this session are as follows:
1. Start cancer pain management early as this has been shown to diminish the nerve sprouting thereby decreasing the pain
2. Early pain management helps the patient to be more resilient throughout treatment

Reference
Mantyh, P.W. (October 24,2014). Mechanisms Driving Cancer Pain. Palliative Care in Oncology Symposium. Lecture conducted from Boston, Massachusetts.


Thank you,
Karen Driskill, CCF Patient Advocate

Thank you for posting a link to this article, Gavin.  This was a hot topic of discussion this past week at the AHPBA convention in Miami.

KarenD

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(11 replies, posted in Members' Cafe)

Thinking of you Percy!

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(7 replies, posted in General Discussion)

Patti,
I'm posting a little late on this, but just to add to Kris' comment, it's Monday, and if the surgeon who placed your new port on Friday accessed it ( left a needle in the port under your skin), and there is gauze around the needle and this is covered with the clear sticky dressing, you should notify your oncologist's office. Then you can stop in and have the nurses remove the sticky clear dressing and the gauze underneath and do a sterile central line dressing change. ( gauze underneath a central line dressing should be changed within 24 hours).

This is only if the physician who placed the port a cath  left a needle in, with gauze around it.

Hope this helps and that you are doing well!

Karen D
( Oncology nurse)

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(14 replies, posted in General Discussion)

Danna I just thought of another thing,
when the pharmacists are mixing your chemo drugs up into the solutions, sometimes there is some "over-fill ".  The bags are not always the same. You will get the right amount of drug, but might be more or less diluent. (more fluids that the drugs were mixed with).

Just a thought.

-Karen

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(14 replies, posted in General Discussion)

Hi Danna!

You're right, why would the doctor be upset the first time and not the second?   If I were getting chemo and there were any changes, I would want to know what in the world was going on too! smile 
Is the doctor you are speaking of your local oncologist, and he is following Dr. Javle's/MD Anderson chemo protocol?

Your pre-medication (before chemo) probably runs between 15 minutes and 30 minutes per bag.
Then you said 2 hours of hydration. Is the Gemzar running at the same time as your i.v. fluids or are they doing it after? (you said they "combined" this).
Then 1 hour of Cisplatin.
So maybe 4.5-5 hours?

Was it the entire process from start to finish that was 6 hours before? Pre-medication, hydration, Gemzar, Cisplatin?

What do you think the nurses are running in faster this time? The hydration maybe? I think the most important point is how fast the CHEMO is being infused.  The hydration can go faster or slower, the pre-meds can go faster or slower....but the chemo should be infused per the specific orders and required time frame, (the drug information from the drug company, etc. sets the standard).  unless there are issues.

As far as potassium in your bags of fluid, that was most likely because your potassium level was off a little when your labs results were reviewed and your oncologist ordered for it to be added. Or maybe you just got little mini bags of potassium. Those are usually a dose of 10 MEQ (milliequivalents)  and infuse over 1 hour per bag.


I hope you are feeling "ok" while getting your infusions.  Are your pre-meds keeping nausea at bay?  Are you able to get enough rest and adequate hydration? 

I will keep you in my thoughts, let me know what you hear back!

-Karen

(All information is my educated opinion only and not to be used as medical advice. Please consult your prescribing physician).

Hi Percy,

Thinking about you and hoping all is well in California!

-Karen

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(14 replies, posted in General Discussion)

Hi Danna,

This is Karen!  Marion contacted me about your question.....and Jason's response it pretty spot-on. 

Here is what I emailed Marion:

As far as that question goes, there are many factors that go into chemo dosing.
Gemzar is generally over 30 minutes, Cisplatin anywhere from 2-3 hours rapid bolus infusion, or 6-8 hours.  (Plus pre-hydration with 1-2 Liters of normal saline pre-chemo and sometimes more afterwards.) BUT, with chemotherapy the patient's age, weight, their body surface area (BSA), their labs (hemoglobin/hematocrit, WBCs, absolute neutrophils, etc.  are all part of the calculation.  Also, with Cisplatin, the serum creatinine, liver and kidney functions, and urine output, come into consideration.  So it is a slightly difficult question to answer without all of the information.  Also, I don't know if she is on some sort of clinical trial being that they have orders from MD Anderson. That hospital or trial may have a different protocol than another.  (or the patient may have dose modifications based on the above listed criteria, or toxicity issues).

I'm curious if the chemo orders are for 6 hours total including pre-hydration, Gemzar, then Cisplatin?   Maybe it's 30 minutes of Gemzar, 2 hours Cisplatin, 1 hour hydration, I'm not sure.

What I would suggest, is to just ask the nurses that are giving the infusion.  Sometimes doctors will say "you will be in the infusion room for "this" many hours", when in reality, they are there for less time, or more.  Ask the nurses how long it takes for the Gemzar and why, how long do you run the pre or post hydration and why, and how long do you infuse the Cisplatin, and why? The nurses are following the doctors orders, but we are also required to have gone through training from ONS and become Chemo/Biotherapy certified, and be tested to hang chemo per the hospital and the Oncology Nursing Society protocols.
Chemotherapy orders are also checked by two chemotherapy pharmacists prior to mixing and again when done mixing, checked by the pharmacist/chemo nurse on receipt of the drug, then checked again with two chemo nurses before hanging the drug.   Many checks along the way, and if there were a mistake it will be caught.
The nurses will be able to explain their reasoning....and I'm sure there is a good explanation.  I'm sorry if I am not able to give a simple answer! Hopefully this response helps a little though.

In addition, Danna,  if you feel any sense of worry or concern over your infusion just let those nurses know.  YOU are the one getting the chemotherapy, and YOU should feel comfortable.  Ask them a million questions and they should take the time to explain everything.   It is their responsibility to do so.


I wish you the best,

Karen

(All information is my educated opinion only and not to be used as medical advice. Please consult your prescribing physician).

Percy,

You are in my thoughts. 

Isaiah 33:2

O LORD, be gracious to us; we long for you. Be our strength every morning, our salvation in time of distress.


-Karen

Welcome back!

Hello Marion!

I did find one of your old posts about tumor fever. I do see it quite often and Tylenol generally does the trick!

Thank you for your kind words too. We are all in this together, and I am glad to help out in any way.

Karen

http://www.cholangiocarcinoma.org/punbb … hp?id=9663

Linda,
There is also something called tumor fever.
Here is a way too detailed link, but I am fairly certain that it has been discussed on the board here at one time or another. I will look around and see if I can find the old posts for you.


http://www.cancer.gov/cancertopics/pdq/ … ient/page2

Hi Linda!

Looks like his counts are good! 

I would assume that he is receiving the 5FU (Flourouracil) via the CADD pump.  Usually people tolerate this fairly well, and I haven't generally seen low B/P occurring from it.
Dehydration could have been the cause for the low B/P initially, and could also cause the temperature increase,........If he has been having diarrhea or poor fluid intake this could be a factor. (The Irinotecan which he probably got on Friday, will do that).

It is funny, and I see it all the time, people tend to spike those temps at night.  I often will check temps every 4 hours on someone such as your husband, and give Tylenol if ordered before the temp goes above 99.0. Any other weird symptoms that he feels or you are seeing?

I'm sorry that this is causing so much worry for you both.  I hope he isn't feeling too poorly, and you are doing all of the right things for him.

-Karen

Oh, and I'm sorry to bombard you with questions on your anniversary!!!

I hope that you are able to have an enjoyable night together. smile

Karen

Hi Linda,

Does your husband have a port a cath?  Did the ED draw blood cultures from his port, or peripherally? (from his skin)
How many chemo treatments did he have this week, last week, or was Friday the first one?
Did the hospital tell you what his white blood cell count or absolute neutrophil count was?
If Friday was his first treatment of the week, then it is too early for your husband to have had the typical "nadir", or when the blood counts show a  decrease.  This is usually 7-14 days after chemotherapy.

The Oncologist and the oncology nurses will not start chemo unless the counts are sufficient enough to begin. 

Does he have a sore throat or been around anyone that could have been sick?
If he has a  port, how new or old is it? Any problems with it? (are the nurses able to flush it and draw blood without difficulty? )
If he spikes a temp again over 100.5, becomes dizzy/lightheaded, has diarrhea from the Irinotecan, not managed with the oral meds, etc. ,  I would call the on-call doctor again, or bring him to the ER.  Being that he has a slight temp and low blood pressure  BEFORE the chemo, makes me think that something (an infection) might be brewing but I am just speculating and don't know the whole picture.

I will try to help if I can!


-Karen  (oncology nurse)


"Just advise based on experience, but please consult your doctor too".

My mother-in-law is another person who received a diagnosis of stage 4 CC with no predisposing factors, or comorbidities.

She was accidentally sprayed with a DDT type mosquito spray in the late 1970s though, which is what she believes caused her CC to appear 30 some years later.  I wish we knew why it happened, which is I think, something that many of struggle with.

Thebompie4-  (cute nickname!!! smile  )

If ever you need help with a definition for something, do not hesitate to ask here.  We all know how confusing medical lingo is, even for those who work in the medical field. HA HA!!!
We will all help out as much as we can.

-Karen

Have a wonderful time at dinner and ASCO!!!!!

smile

-Karen

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(8 replies, posted in Members' Cafe)

In the late 1970's my mother-in-law developed fulminant hepatitis. (inflammation of the liver without a known cause).

She was treated by a physician at Duke I believe, who gave her high dose Vitamin C therapy which resolved her hepatitis.

Unfortunately, she developed CC in 2010 and passed away 4 months after diagnosis.

She always thought that an incident where she was accidently sprayed with DDT was the catalyst for the development of this cancer.  If so, maybe the DDT caused the hepatitis, which in turn caused a long standing irritation or inflammation to the bile ducts.  I'm not sure, but it is interesting that in her case, intravenous Vit. C worked.....at least for 30 odd years or so.
I remember her telling me this and thinking wow, what an interesting treatment!

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(167 replies, posted in General Discussion)

I am thinking of you all today, and believing, KNOWING that Lauren is a fighter. 
You are all in my prayers.

-Karen

Hello everyone!

I am finally sitting down to say "Hi" to you all, and post a couple of things about ONS congress. 

The Oncology Nursing Society holds a congress, or conference yearly to discuss new developments in cancer care.  Of course there is ASCO which is the BIG global cancer conference, but the one I attended is nursing focused.

I am ever so grateful for being given the opportunity to represent our foundation, and to meet new people who can further our cause.

I also was so happy to meet a new advocate, Heidi.  She is absolutely WONDERFUL, warm, and caring. I hope to see her again sometime. smile

Anyhow, I spent the majority of my time looking through the poster presentations and was also able to attend a couple of sessions.

One interesting poster/presenter was one that I had seen last year at ASCO discussing Grade 3-4 FU toxicity.  The presenter was at ONS with new developments recently discovered.


The poster was titled:

"DPYD Gene Mutations Are More Prevalent in Patients Experiencing Grade 3-4-FU Toxicity"


The research was funded by Myriad Genetic Laboratories, Inc., Salt Lake City, UT.


The new research presented on the poster was  DPYD mutation prevalence in patients with elevated 5-FU Plasma Levels.

" The DPYD gene variants were identified in 7 of the 24 patients experiencing elevated 5-FU plasma levels".
"The E412E variant was observed at a frequency similar to that of the common high risk mutations".


So what this says to me is that, as we are all rapidly realizing, our genes play a huge part in how and why our bodies develop cancer.....or how our bodies will react to treatments for cancer.
Chemotherapy is moving towards targeted, gene based therapy.  Very individualized.

5-FU is a commonly given chemotherapy agent, and some of  you have received the oral form- Xeloda for treatment of CC.

To quote the poster " 5-FU in chemotherapy regimens remains widespread, yet DPYD gene testing utilization remains minimal.  Most testing occurs post-treatment in response to a severe toxicity rather than pre-treatment, which would allow for treatment adaptation to reduce toxicity risk".

Perhaps with this new research, patients prescribed Xeloda or 5-FU as part of their treatment plan will be tested prior to initiation of therapy.  This would in my opinion, greatly improve the quality of a person's life (less toxic side effects), and perhaps increase the chances that the treatment plan (chemotherapy regimen) will be maintained.



Another poster I saw was by a nurse researcher out of Korea.  It was a study done on foot reflexology and the decrease in dyspnea ( shortness of breath)  in cancer patients. 
What caught my eye was that one of the patients in the study had Cholangiocarcinoma.

I will have to track down the abstract for the poster as the phone I had taken a picture of it with crashed and it got lost! AHH!  But needless to say, I think it is exciting to see studies of CAM (complementary and Alternative Medicine)  implementation. 

As soon as I track down the abstract I will attempt to post it for everyone.   

I also bumped into two old colleagues of mine who are APRNs in Virginia.  I was able to pass along our information, and discuss our foundation (and our goals) with them.  I will be shipping our beautiful new newsletter and foundation packets out to their cancer center in Richmond.

-Karen

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(10 replies, posted in Announcements)

Congratulations Linda!  I learned so much last year working with the RAN group. It was such an amazing program, and a wonderful group of people!  Have fun at ASCO!

Karen

Oh Lainy, no need to feel bad! smile I hope that you will feel better soon!

Hello everyone!

I am here in Phoenix amongst nursing researchers, advanced practice clinicians, and bedside nurses.  I wanted to say that there has been a WONDERFUL response to our booth and I have given away many many pamphlets. It is very exciting to me, to truly feel that our information will be shared with others!