grandma has pancreatic cancer need info plz

We found out my grandma has this last week she had back pain and could'nt eat much she went to the er she found out there, they also found something in her stomach. After a couple days they sent her home wild mild pain medicine on Sat. she called for an appt. after Doc. at hospital said they would get her in sometime this week well when she called they gave her an appt for 3 weeks from now. That was'nt going to go so I did research this weekend found info on a Doc at IU she has an appt for tomorrow morning he studied at Johns Hopkins and has been doing pancreatic surgery for 20 yrs.

I talked to his nurse and she told me her ca19-9 is 230 and scans show nothing inlungs,liver.spleen,gailbladder or urinary system. The cancer on the pancreas is 3.0 cm x 4.8cm it is also on the tail.

I've been reading these boards for the last few days and alot of what I asked came from reading these so THANK YOU all very much for that.

Does this sound bad or good, what kind of treatment should we expect or what other questions should I ask, the doc office told me to have questions ready for them, what should I ask  Just anything any of you would think is helpful.

THANK YOU

Kristine

Kristine,

From what I've learned about this disease, the first thing that needs to be figured out is whether the cancer is resectable or not resectable i.e. assuming they have already biopsied the growth and found out that it is definitely pancreatic cancer. The criteria the docs use to figure whether it is resectable or not is by looking at whether there are mets in other organs or lymph nodes.  If the tumor is confined to the pancreas, then it can be surgically removed assuming it is not in contact with any of the major veins or arteries that passes or in contact with the pancreas. 

Treatment options would vary depending on whether it can be surgically removed or not.   As far as the numbers go, surgery is the only treatment that offers the best 5-year survival rate.  You can find out more about surgery and eligibility for it by clicking or copying and pasting any of the links below:

http://pancan.org/Patient/Pancreatic/surgery.html

http://pathology.jhu.edu/pancreas/TreatmentIntro.php?area=tr

 You can also contact the Pancreatic Cancer Action Network (www.pancan.org).  They can send you an information packet that would help you learn a lot more about this disease.  I believe they have a toll free number that you can call as well.

Also, another messageboard that offers tons of valuable information is:

http://pathology.jhu.edu/pancreas_chat

I believe this board is actually setup by John Hopkins. A lot of helpful caregivers/patients/and some medical professionals go into that board and offer advise. 

I hope this helps.  Wishing the best for your grandma.

We went to doc this morning found out she also has cancer on her abdomen inside wall that's also what's coming out her belly button. Doctor says maybe 6-9 months with treatment. But we don't think it will be that long. He said it started at the pancreas and spread to the abdomen. She goes to another Doctor friday to talk about gemzar. What can we expect from here?

Thanks Kristine

Hi Christine.

I'm sorry about your Grandma.  Unfortunately this disease is unpredictable and everyone responds to treatment differently.  The good news is that a LOT of people survive longer than the standard 6-9 month prognosis but some don't.  Your Grandma's situation is bad but people have survived worse.  Don't lose hope but get all the information you can to help with treatment decisions.  The Ca19-9 does not reflect the spread to her abdomen.  To help track this a Ca125 marker is better.  Watch for a move in her numbers.  The aim is to decrease the tumour or keep it stable so any trend downwards is GOOD news and tells you if the chemo is effective.  There are others they can use and some in combination are considered to be more effective but are also more toxic.  You have to weigh up her quality of life against the chance of a miracle.  Having said that a lot of people feel BETTER when they start chemo.  Try Johns Hopkins for more info.  Good luck in your journey.

Liza

Hi Kristine,

I'm sorry about the news that you've received today.  I believe that the options is whether to have chemotherapy or no chemotherapy.  It seems that most newly diagnosed patients these days are given gemzar (gemcitabine) as their starting chemo regimen. I've also heard of some patients who chose to have a more agressive regimen using a combination drugs together with gemzar. You can find out more information about gemzar and how to manage side effects at their site: www.gemzar.com. 

It is best to have an oncologist who has a great deal of experience with pancreatic cancer. The positive thing with chemo is that there are a good number of patients who responded well with their regimen i.e. the cancer got stabilized and did not spread further or got any bigger.  Some even shrinked a great deal that they became eligible for surgery.

As with the infusion itself, some get it weekly for three straight weeks and one week off.  This cycle will continue as long as her blood tests are favorable.  One of the common side effect of chemo is low white blood count.  When this happens, chemo infusion will be on hold until the patients blood counts go back a level where it is not risky for the patient to develop infections or other complications. 

Also, I couldn't think of any reason why you can't be optimistic and hope for the best.  Miracles do happen everyday in different ways.  "Cancer survivors" is a term used often these days.