Pancreatic Cancer Survivors

hcuppett said:

Finding Oncologist
Any idea how to find highly recommended oncologists for treatment of PC? Looking for one in the DFW area!

I'll highly recommend mine to you! I'm a stage 3 pancreatic cancer survivor. (26 months) Oncologist- Andrew D. McCullum. Located at: Texas Oncology (Big Baylor, Dallas) 3535 Worth St. Dallas, Texas 75246-2006 Phone # 214-370-1000 If surgery is needed (Whipple). I recommend Jeffery Lamont. If radiation is needed. Dr. Cheek If endoscope is needed. Dr. Mallat Sorry I don't know the phone #'s to the last three but, Dr. McCullum's office knows them well. I'm sure they would be happy to give them to you if you ask them. I had everything done at that address (Baylor). The whole staff there, from the check in ladies,nurses, lab techs and etc. were GREAT! They all made a very miserable situation as comfortable as humanly possible. I know you just asked about an oncologist,but,with PC being the issue. I wanted to make sure and cover all the bases! Take Care and GOD BLESS! Oneshot

UPDATED 1-30-15

just wanted to say to all>>>>never give up...after being down from my whipple surgery and chemo i was ready to give up a few times but glad i didnt, you have to keep fighting, its been 6 1/2 years now since my surgery and my last cat scan last month turned out good,  still have minor problems with effects from the surgery like bowl movements and dibetic problems but that i can handle... just glad to still be here, prayers to all the survivors and all who has had cancer or those still fighting it..god bless..

Scarolinagirl29 said:

What foods did you eat

Hi, I just had the whipple surgery and I am having a time with getting nauseated a lot during the day, could you help me by letting me know what I am doing wrong and tell me what kind of foods did you eat, thank you !

ask your dr about giving you an Rx for Creon pancreatic enzymes.  They did wonders for me!  Also eat small meals during the day and low fat.  Try cooking meat in crock pot so easier to digest.

it gets better with time!!!

nsucoe said:

inoperable neuroendocrine pancreatic tumor

My husband has the same issue, however he has been undergoing chemotherapy for 4 months now and the tumor has shrunk tremendously.  It is still wrapped around the blood vessel and abuts the artery.  We see Dr. Seymour with Millenium Oncology in Spring, TX, and will have the Whipple surgery done by Dr. Steven Curly (Baylor).  We were told that the blood vessel can be reconstructed after the tumor is cut out, but the tumor will have to not be attached to the artery to successfully remove all of the tumor.  It's so scary, but so far the chemo is doing its job.  I would love to connect with others going through this.  My husband has two more months of chemo (one week on and three off) before he has the scans redone to assess whether the Whipple can be done successfully.

Hi,

I see that you're new here, so I'm not sure if you've noticed the dates on these posts.  Most of them are several years old, so your message has a fairly good chance of not getting a response.  If you don't hear from anyone else, please don't take it personally!  I became a registered user several (nearly 10) years ago when I had ovarian cancer.  I found the ovarian board here very helpful then, with so many women willing to share their stories and knowledge.  Sadly, that's not the case for pancreatic cancer, since it doesn't even have a dedicated board.  There really should be a board for pancreatic cancer.  It would make it so much easier to find information and support here. 

The reason I'm here now is because I'm once again looking for support, but this time it's due to my husband.  He is in a similar situation as yours.  He was diagnosed with Adenocarcinoma of the Pancreas October 2016 after loosing weight, turning jaundie (etc.).   His is the more common type, while your husband's is apparently a rare one.  The treatment options may be somewhat different, but like you, we were told that the tumor can't be removed on account of it growing around vascular structures in the head of the pancreas.  He started this process with a stent being put in to open the ducts, wich helped to slowly eliminate the jaundice.  After that came chemo.  He just completed 6 rounds of it, and will be having a CT scan in a few days to see if the tumor has reduced enough in size for surgery to be possible.  His CA19-9 has dropped from 5700 to 420 while on chemo, so we're hopeful the tumor has indeed reduced in size enough.  Fingers crossed!  If that's not the case, he'll be switched to long-term oral chemo along with radiation 5 days a week.  That sounds like a whole new set of worries, but we're not there yet.  We're doing our best to take this process one step at a time, and not get ahead of ourselves.  It's overwelming enough as it is at times.  We have a great support system of friends and family who are there to listen, but none of them really understand what this is like.   If you're looking for someone who can relate to what you're going through, I might come close to qualifying.  Feel free to contact me. 

Marianna

mockhill said:

pancreatic cancer survivor

2013-01-18     I had adnocarsinoma of the pancreatitis in Oct.2003  I had surgery in Jan. 2004.  I have been cancer free since.  When it was removed they dicovered one lymp nobe was affedted. In surgery they removed half of the pancreatitis. my spleen. and a small piece of my colan.  I still go in for my yearly check ups- which always make me nervous.  So for those out there who read the 5 yr. life expectancy--forget it.  Put it in Gods hands and enjoy every day. 

Mockhill, 

I do agree with the nervousness that shows up around check up time and your last two lines.

"So for those out there who read the 5 yr. life expectancy--forget it.  Put it in Gods hands and enjoy every day"

I am new to all of this.  My surgery was back in March but I was wondering if the amount of Creon taken can vary from patient to patient and how does one determine whether more or less Creon is needed.

toribear28 said:

Same situation
Did you mom give up on life at all? My mother was diagnosed last Christmas and they cannot take it out. She was told that it would be "quality over quantity" and that she would be undergoing chemo the rest of her life. Recently though it feels as if she is just giving up on life. I don't know what to do - if anything. I know if she would try to enjoy what time she has left then she would last longer. But to get her in that mindset, I have no clue. What did you do with your mother in the days of illness? In the good days? I can't seem to get her to go outside at all, except to Dr. appts. I can't even seem to get her to shower anymore, or to put on makeup and to feel good about herself. I just want to help, but ultimately I don't know how. If you have any suggestions, it would be greatly appreciated.
Tori

Hi I just wanted to tell you that my Sister was diagnosed with inoperable pancreatic Cancer too, the vein is obstructing the operation so she is on Chemo. She is not tolerating it very well and is kind of giving up, she won't get out of bed accept to use the restroom or go to the Doctor, she wont go outside and her muscles are waiting away. My fear is she will become to weak to walk at all and her last days will be spent in her bed. I don't want to lecture her on the importance of exercise, eating and fighting is because she doesn't want to hear it she just says no I'm not going to do it. I want our last days to be loving and supporting but it's really hard to watch her give up, I wish I could fight this for her. Very hard to watch. Kim 

Luigler said:

Not Giving Up

My Father was diagnosed with the same 7 months ago, going thru chemo. His close relative was diagnosed a little later than him but died 2 months after being diagnosed. The big difference was that my father didn't give up. Its not easy, chemo is beating the hell out of him. He had times that he felt down & depressed, he went to a psychiatrist who put him on medication, so that helps. Perhaps u can get your sister to a psychiatrist to prescribe her some meds.  

Good Luck & tell your sister to hang in there!

Please forgive my bad spelling ...it's been a rough night and I am trying to answer this quickly in hopes you might get a chance to read it soon.

Luigler is correct about the medication. Her oncologist should be able to get them ordered.  I say this do to having been diagnosed in 2008 with stage 3 pancreatic cancer with a vein encased , also it had spread to my gallbladder,small intestine ,stomach , etc.   I was unable to hold down anything . That's if I felt like eating anything in the first place.     It didn't seem like a very promising outlook at the time. Thus the anti-depressants for a short time.   I might suggest talking to her oncologist about having a J-Tube put in.  It basically bypassed my stomack and put nutrients into my small intestine. I wore a little back pack that had the "food" my wife and then later myself put in it. Then it pumped the "food" in automaticly.  I did this while going through both Rads and Chemo. It was removed when I had my Whipple done.  Now my doctors didn't pull any punches about what my odds were.  But they were great doctors who were willing to try if I was willing to try.

I know you care dearly about her not eating and moving much .  I can tell you this, from being on her side of this cancer. My wife was so worried about me eating ( as you are about her) that she was yelling at me to try to eat something,anything to get my strength. Not trying to be mean to me. It was because she was scared and worried about me. I had to explain to her " Can't eat! no matter how hard I try!  That's if I felt like eating at all. This went on until the J-Tube was put in.  Even then I still couldn't eat much and what little I might swallow. Hurt like heck and then came back up.  The only difference might be is, I did let my wife and family know I was going to fight this cancer with everything I had. Just early on I had to get over the initial shock of what the heck was happening to me.

I hoped this helps you in some way!

Keeping you and yours in prayer,

Oneshot

Oneshot said:

Bump

Just bumped it up from the back pages for those new to pancreatic cancer. I might add.... some are post over 10 years or more. but still have good info to review.

I still wish Pancreatic Cancer could be found a little easier than looking under Rare and other cancers. Maybe ,somebody more computer literate than I can get that one done!

It sure would be nice as pancreatic cancer is not rare.

I've been cancer free for almost a year until last week. Been through the whole thing and it has come back. It's been hard ever since hearing it's terminal. But I will not give up.

Oneshot said:

Bump

Just bumped it up from the back pages for those new to pancreatic cancer. I might add.... some are post over 10 years or more. but still have good info to review.

I still wish Pancreatic Cancer could be found a little easier than looking under Rare and other cancers. Maybe ,somebody more computer literate than I can get that one done!

I am a uterine cancer survivor, so normally post in that forum, however I have a friend just diagnosed with pancreatic cancer, so was searching for info on here about her treatment. I found it hard to find (finally clicking on the rare cancer forum), so I sent a message to CSN asking them to make a forum just for pancreatic cancer. Maybe that will help?