Time to start talking about PC

Pancreatic Cancer
#1

Hi I posted this a couple days ago om the intro discussion of this group the realixwed it should have a its own topic.

Come on folks we need to talk about PC. We are a small group who dont have that many people to help. We need to be communicating. I know i could use someone to talk to, and I want to hel all I can.

Ron

Hi

I have been a care giver to my wife for 28 months. She was Dx’d with adenocarcinoma in March of 2005. She has been through surgery (distal), radiation, and various chemo’s. She now is being treated for a recurrance sine July of last year.

I just want you all to know, especially those just starting down this road, that there is hope, maybe not a cure, but not the months that most Onc’s try to tell you. Adenocarcinoma is a very aggressive disease, but can be controled.

It did not take long for me to realize that since this disease, and treatments effects everyone differently, and the effects are so unique as the person dealing with them, most Onc’s dont offer a lot of advice on the possible side effects of the cancer or treatments.

Empower your self, research all you can, join groups like this and discuss the issues you or your loved one is facing. The support you will get for both medical issues, and just importantly the emotional issues will be invaluable.

Since I am not a patient I cannot offer much emotional advise to them.
Even though this has been effecting our family for such a long time, i cannot begin to think of what goes thru a patients mind.

FOR THE CAREGIVERS

As I said earlier, empower yourself with knowledge, it may seem overwhelming but that knowledge will be instumental in making decisions.
Remember to ask questions of your Onc (He works for you!!) Write your questions down in a binder or notebook. tkae it to all appointments and write things down. It will amaze you that no matter how well you think you know whwt to ask, if you get an unexpected result of a lab test or scan, your mind won’t keep up. Request copies of all lab tests and scans. This will save precious time in the future, if for some reason you need a second opinion, or need to change your doctors.

Do not allow this to take over your life. I initally made that mistake and it took a long time to get over it. You can’t afford to be in a state of confusion all the time.

You will be assuming so many additional responsibilities, it will be difficult to manage them all, but with help you can do it.

Take time for yourself, this is so parmount in your mental health as a caregiver. You have to have a little free time, or this will consume you.

Accept and if need be ask for help from family and friends. You cannot do it all.

Last of all go with you instincts, if you feel your onc is not aggressive enough then tell them. If they dont seem like they really care. Never be afraid to investigate a new Onc.

I apologize for the long post but if this info helps, it was worth it

If I can be of offer any advice or suppot please feel free ask.

Ron C

#2

Hi Ron,

You speak as if you are a moderator of this group. Is that the case?

Kyle

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slowhand1843 wrote:

#3

Hi Ron C

I am with you keep on finding treatments there are many. Latest one I found at John Hopkins is the Pancreatic Vaccine. I am corresponding with the doctor who is conducting trial to see if I am a candidate. I too had a whipple operation in 2005 everything was clear no tumor which I had in the ampula or head of pancreas deodenum. was clear for 2 years and this april a small mass sprang up by the abdominal wall on the navel. Started chemo again but its always a pain need to reseach all the latest. Wonder what kind of pill Elizabeth Edwards is taking for her now cancer in the bone. She doesn’t have any affects.
mother

#4

Hi Mother

Sorry to hear you are having to go thru this again, as if once wasn’t enough.
I have heard of the vaccine, keep me posted on what you find out. My wife goes for a bone scan next friday to see if it is the cause of chronic back pain.

Call me sinical but i don’t think you will get a full story on Mrs Edwards unless there is a major development in her health. Being in the public spot light could only add additional stress, she must already have with her husband in the run for public office

We leave today for Edisto Island for the weekend. I will check back in on Monday.

#5

Hi Ron,

What do you have in mind? What details would you like us to focus on?
Recent research? Current therapeutic options? A discussion of medical
oncologists and their approaches…in-the-box (sure-fire death sentence),
out-of-the-box-conservative (more aggresssive and progressive but still
somewhat conservative) and out-of-the-box liberal (and open to
implementing more creative approaches utilizing more current research
results that are not yet accepted therapeutic approaches). Also, those
that could be in any of the three above categoried but also utilize
integrated therapeutic approaches (incorporate naturopathic therapies,
neutriceuticals, nutritional guidance, herbal therapies, counseling, and
accupuncture)? Et al?

Tell me what you are thinking.

I have spent the last 7 months studying cancer research…with a focus
on pancreatic cancer due to my wife’s diagnosis in November 2006.

I find that there are often more options and more viable options that
exist than what most medical oncologist are willing to utilize…for
various reasons.

Kyle

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slowhand1843 wrote:

#6

Hi Kyle

All things you mention are on the tabvle for discussion. The point is that if we don,t discuss it we all could miss valuable information. There is a lot more to this than just the treatment options. If you have spent 7 months as the caregiver to your wife, I am sure you have learned alot, but since you are here, I have to assume you want to learn more or yopu just need to talk about it.

This forum should cover all issues related to PC, including physical, emotional and of course medical issues.

What type of treatments has your wife been thru Kyle? It may interest us all to be able to talk to someone that is going thru the same experiances.

Look forward to hearing back from you

slowhand 1843

#7

Hi Slowhand,I too joined this site,hoping I could get info and speak to others who have had this or those who are caring for someone with pancreatic cancer,my mom was diagnosed stage 4,on June 23,and surgery is not option for her,she has had 2 chemo treatments so far and seems to be tolerating that well,but would like to know if any one else has been thru this also,and all side effects,physical,mental,etc,just need info and support too!Thanks,Kgirl

#8

Hi Kgirl

I am sorry your mom is so ill, but there is always hope.

Where is your mom being treated, and what chemo is she on? Many people who are not resectable find that after a protocall of chemo the tumor has shrunk enough to allow the surgery.

Slowhand

#9

Hi - I too am anxious to acquire more information about PC and the different types of treatments being rendered throughout the different cancer centers. I was diagnosed 12/05, had surgery(distal) 1/06. I explore and am an advocate of riding the line between conventional and alternative treatment options. I incorporate so much into my daily routine that does not necessarily revolve around “traditional meds or treatments”. I do Yoga, high Vitamin C infusions, lots and lots of vitamins, eat organic - just to name a few of the things I am doing. I keep up on as much as I can and try to be very knowlegeable when meeting with my oncologist. I did concede to taking Tarceeva as of 3/07 and also Avastin. I am very satisfied with the Cancer center I was fortunate to choose and feel they are supportive, caring and have a personal touch in my care. Tomcat

#10

Hi TomCat

Its nice to hear from you. My wife has not ventured into the alternate treatments. She has however done Gemzar, Xeloda, and now tarceva. We also have been happy with the treatments she has received, but just recently learned our ONC will not use off label drugs. Since the drugs mentioned above are the only one’s approved for PC by the FDA, we are now at a loss as to what to do when the Tarceva looses its efectivity.
Our Onc says when that time comes we will look at a trial or revisit one of the other drugs. This does not settle well with me, so we will again start a search for a new Onc.

Hope this finds you well and in good spirits

Slowhand

#11

Hi Ron,

In regards to this discussion…

If possible, please contact me directly/privately
at batlan@comcast.net

Kyle

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slowhand1843 wrote:

#12

Hello Kyle

As I said in my email to you. If any of us in this forum, need to talk about PC, we should do it in this forum. This I think would involve all members in the discussion, and we can all learn as we go. However if you or anyone needs to talk in private I am sure most of the members in this forum would be willing to talk, myself included.

I just want to point out the whole purpose of this sight is for each of us to support the others. If we approach things like this our group will all benifit and get to feel comfortable with each other.

I hope you don’t take this the wrong way, I am here if you need to talk.

Private is ok but lets do what we can in this forum.

thoughts are with you

Slowhand

#13

Hi Kyle

I am not a moderator, I apologize if I gave anyone that impression.

I am the care giver to my wife, I came here for two basic reasons.

  1. To learn all I can to continue to help my wife through this terrible disease.

  2. As a care giver for 28 months, I can still remember the fright and helplessness I felt in the beginning. I wish those feelings on no one. If I can help someone through this. Then i have given back something that people have given to me. I owe my wife that. She has been through so much and looked to me for help. I made it my business to learn all I could.

The bottom line is this is suppose to be a community of people with unique experiances that happen with a disease like this, and we all need support.

Sorry for giving you the wrong impression.

Slowhand (Ron C)

#14

Hi Ron,

I think your goals and efforts are admirable but I do not believe that
in a forum structure such as this that a substantial value can be obtained
by discussions in brief moments in time regarding this devastating disease.

Granted that some value is derived by it but not enough in my opinion.

New people will be diagnosed and come on board and will have the
same needs and questions and each discussion will have to occur over
and over and over again. I do not have that kind of time to continue to
repeat myself over and over again. While a message archives maintains
a history of past conversations (if this site has an archives or is easy to
access and search), new list members often do not know about them
nor find it easy to access this information on a timely basis. They also
will not know what they should access and what will help them the most.

Important information needs to be ever-present and easily accessible at
all times. Files, lists, links & databases, etc need to be created to
give instant
access to crucial information that needs to be known at the very moments
after diagnosis (unfortunately sometimes even before a biopsy is performed
and definitely before practitioners are selected and treatment is begun).

Support is important and can be well served on a forum such as this but
not much beyond this. My wife and I do not need support, we need
useful information and that is why I have spent the last 7 to 8 months
doing research. I am interested in helping people access such information
in a much faster manner than I was able to do. I am a health care
professional
and the research was tedious and often over my head. The average person
will find it much more difficult and time-consuming to do the research
and then
understand it. A large number of pancreatic cancer patients will not
survive
for this length of time…they need the information quickly. The
challenge after
gaining the information is getting practitioners to listen, consider the
information
and go outside-the-box. Most will not do that. Most will hang on to
the old
ways of thinking and the safety of ‘accepted practice methods’ and condemn
patients to historical outcomes (death). My wife and I wnet to see a highly
regarded medical oncologist as a second opinion. He stated directly to us
that “oncologists are stupid.” I did not ask for an explanation of this
statement
but I have come to the conclusion that what I mentioned above is the reason
for his comment…that medical oncoclogists do not often go
outside-of-the-box
and explore other options.

As such, I have begun the process of developing such a forum/site that will
provide such. It will take some time to develop it but even during its
development
period it will provide valuable information in a very timely fashion
that will be
very important for pancreatic patients and their families to have
available to
them.

This information may also demonstrate some of the signficant
deficiencies in our
current medical system and medical oncology professionals in regards to
treatment
approaches to cancer in general and pancreatic cancer specifically.

If anyone wishes to have access to this site, they will need to contact
be directly.
I could use some help doing this, also.

Sincerely,

Kyle
batlan@comcast.net

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slowhand1843 wrote:

#15

There are many medical oncologists using FOLFOX or FOLFOX + Taxol.
My wife has been on the latter and received some level of benefit.

FOLFOX = 5-fluorouracil + leucovorin + oxaliplatin

This is a commonly used combination for pancreatic cancer. The taxol
has an anti-angiogenic effect so is often added to the mix. Your medical
oncologist has a very narrow approach…I would seek one with a more
aggressive approach.

Another drug approved for pancreatic cancer is Erbitux (cetuximab) which
is a monoclonal antibody that inhibits the epidermal growth factor receptor.
In combination with Tarceva, which is an epidermal growth factor receptor
tyrosine kinase inhibitor, there is synergistic activity. Combined with
genistein
there would be additional activity. Combines with turmeric (curcumin),
which
has at least three different anti-cancer effects (cox-2 inhibition,
down-regulates
the MDM2 oncogene through the PI3K/mTOR/ETS2 pathway, enhances the
expression of the tumor suppressor p21WAF1/CIP1, antioxidant activity, &
possibly other mechanisms) with additional additive effect.

There are many other active compounds that are useful against pancreatic
cancer and when used most effectively can have significant enhancing effects
with existing, approved allopathic chemotherapeutic treatments.

You do not need physician approval to use many of these as they are
non-prescription. You simply need to do the research and find the
appropriate dosing .

Kyle

slowhand1843 wrote:

#16

I have a question? Is there somewhere you can find medical terminology for like the CT scans and PET scans… Some of the words in my husbands reports… I just don’t know what they mean. We are very confused right now… because the Dr. called and said that he was going to do one kind of treatment and then his nurse called and said that it was totally different? I dont know what to do or say? They had talked about doing the chemo radiation and now the nurse says only chemo once a week for 3 weeks and then we will see the dr. 1 a month???

thanks for any replies
robin

#17

I am currently out of the office and will not be checking email. I will return on Tuesday, July 17.

#18

I would call the place where he is getting the scans and ask to speak with
the radiologist. He should be able to decipher the terminology.

mother
----- Original Message -----
From: “msrob68” pancreatic-cancer-cpt5021@lists.careplace.com
To: virginiadef@cox.net
Sent: Sunday, July 15, 2007 12:35 PM
Subject: Re: [pancreatic-cancer] Time to start talking about PC