One patient with glioblastoma still alive nine years later
by tlgoldilocks on Wed Nov 14, 2012 02:08 AM
I have researched more about this disease; pancreatic cancer than anything else in my life. I have been an advocate for my dad, got him compassionate use of chemo drugs when an oncologist could not and then some.....I have referred many others; patients & families to this site for reference & support. However, this may not be a good thing? Why? Because there are 2 kinds of PC- Endocrine, and Exocrine, and lastly something that mimics PC, Pseudopapillary Neoplasm. Location of tumor is of utmost importance, as is Stages I-V, and with or without mets to other parts of the body.
So this being said with many families and warriors alike visiting this site for information, support, and being an "layman" advocate...Please be specific in what you have and where in the body...Let's be realistic and factual~ and not be subject to interpretation. We all want the very best for our loved ones and ourselves...But we need to ask the right questions to the Dr's depending on our OWN or Loved One's specific condition and not be complete blinded sided by what we do not know or is not pertinenet to our own case. This disease does not wait for anyone, and I don't want there to be false hope for those that need info in another areas of this disease, and are NOT asking the right questions or reasearching the right information.
Whipple is completely different that a distal pancreotectomy and the location of the tumor dictates which operation is necessary. Stages and mets will be significant, as many are NOT OPERABLE due to the spread/metatisiszed of the cancer to other areas of the body. Survival is also different based on the above information.
We can all stand up and applaud and be hopeful for the future...but know what You or Your Loved one is dealing with! Time is crucial, and prayers are nice, but don't get the job done to live.
by DavefromCT on Wed Nov 14, 2012 02:42 AM
As you mentioned there are very many variables. If I post here and leave out some of the details regarding my PC situation, I am sorry. However, you yourself have not even listed all the variables. How about adding age, gender, race, and grade of tumor cell to the laundry list...and I'm sure there are others. Yes, there are two kinds of PC, but unfortunately 95% are exocrine.
We all try to help and support and if we leave out some detail, well then someone needs to ask for additional specifics.
I really take offense at the comment that prayers are nice, but doesn't get the job done to live.
Dave from CT.
by tlgoldilocks on Wed Nov 14, 2012 03:37 AM
Yes Dave, you are correct...There is an absolute laundry list of variables that determine a diagnosis of pancreatic cancer. My post was not specific to your post. I have been an advocate for others and last night I referred them to this board and wanted to highlight to those that have received such a diagnosis and to those families searching for answers not to jump on everyone's post in search for answers that just may not be there.
Fact, EXOCRINE ADENOCARCINOMA HAS IT'S ODDS STACKED AGAINST A PATIENT. Regardless of age, race, gender, and is usually diagnosed much too late for surgical options...Unless it happens to be in the head portion of the pancreas, where a person exhibits physical signs & symptoms much earlier. Much is unknown about this disease. My dad was not a smoker, fit & slim- 6' 185 Pds, not diabetic, did not eat high fats, fast foods, sausages & nitrates etc, not a drinker and no cancer in the family or heart disease...So why him??
Information is power! I know because I cut through all the political red tape of Govt and cancer agencies and got my dad a drug still in clinical 3 trials for free and for as long as he could endure the rounds. I encourage everyone to be informed about what type of PC they have, and what treatment to ask/inquire about that is pertinent to their specific case.
My words and post were not intended to single you as a poster on this forum, but for everyone that stops by; patients, advocates, and families trying to search for resources and answers to this mysterious disease and sorry that you took offense.
I wish you the very best,
by bestfriendmom on Wed Nov 21, 2012 03:02 PM
Many people that turn to this website may not have all of the information in reference to their loved ones cancer. Many people are looking to find compassion and sharing of information with someone that has or is in their shoes. Not all of us are as educated as you seem to be and many of us are scared by the things that we have learned about this horrible dieases. A liitle compassion, prayers and kindness from people in the same place that you are go a long way. the next time some one leaves some detail out remember that they have just learned news that has changed their life forever and the only thing that they may be thinking is that they are going to lose a person that they love very much.
by tlgoldilocks on Wed Nov 21, 2012 06:07 PM
Yes I totally understand...I was in that very same place this past March 2012. I feel everyone's pain, their fear, their denial, and their grief & losses.....I have been there too most recently. I lost my dad this October after a valiant battle, and part of me went with him, as I have fought so hard with him.
I posted what I did...because time does not wait in case of this horrific disease, and you have to search out the "correct" information for the specific type and location of PC....If you do not have the correct info, you do get false hopes, you do get mis information, you ask the wrong questions search in the wrong places, and the vicious circle continues....I spent countless hours, days, weeks, months and different means researching, and I never gave up hope. I wrote tons of emails, made lots of phone calls and spoke to the people that had the right information, and could steer me in the right direction....It was frustrating, exhausting, and yes I did become, short of an expert in the medical field,...I came pretty close! I was so optomistic of finding the best for my dad, my best friend. I didn't come easy though, and it is not.
I had to ask for my dad's scans and detailed explanation from the reports to know what my dad exactly had and where it was, so I could converse with his Dr's, continue researching possible treatments, emailing specialists and sending his scans & biopsy reports to other specialists for their opinion for candidacy & possible treatment options.
So yes, I realize people come to websites such as this one for support and information, and you can spend countless hours on it looking for that source...but time is precious, and if you want to be your loved one's advocate you have to be in the "know" and act quickly, as your loved one can't be.
I have lots of compassion for those that fight this beast and the families...You can be a support system, or an advocate, and both...some people can do the advocacy & research work, and some can't. I happen to be a warrior with a cause and a purpose, as my dad was...he never gave up hope either and fought as long as he could with me right beside him rallying the troops, so he could make his own "well informed" decisions...Because there will be a time, when the person cannot or does not understand what is proposed or is simply is in fear and/or denial.
This is a mysterious disease, and I have several firends that have lost their loved ones to it, and all have been different locations, progression etc...they all found out late in diagnosis, as most do. We need lots of $$$, Govt support, strong advocates, awareness campaigns, to detect this disease early on and find a cure...That we all can agree on.
I wish your mom, and family my best wishes and regards and to all those that know this pain...May strength and hope be with you.
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