Pancreatic Cancer Survivors

artmel

jmhiggins said:

My mom was diagnosed toward the end of August. Stage 2. Doing 2 kind of chemo first, then radiation, the hopefully her tumor shrinks enough to do the surgery. I am very scared. Have any of you used the combination chemo treatment with Gemzar and Cistlatin? This is what she is getting right now every 2 weeks for 4 weeks. I haven't been able to find this combination on the internet. Also, have any of you been treated in New Mexico. Thanks so much for any information you can give and God bless.

Hi

my mom has the same situation, but they doing combination of Gemzar and Xeloda.Well, we still fighting.

Oneshot

hcuppett said:

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

Oncologist D/FW 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

nsucoe

fatt said:

Inoperable Pancreatic Cancer

Hello, could you kindley tell me who your Doctor is? I have a 34 yr old brother who has been diagnosed with advanced (5cmx2cm) but locally confined pancreatic cancer. He is being seen by an oncologist and a surgen at Vanderbilt University Hospital in Nashville TN. They told him that they can not operate on him because of blood vessles involvement. They told him that he should go through Chemo first in hope of shrinking it(only 30% reponse rate). I would like him to get a second opinion before going through with it. I just don't know a very good surgen that he can see.

I glad to hear that you are improving and on your way to recovery. That gives me hope.

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.

rebelwhg1

6.5 year survivor

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..

moonyean22

whipple procedure

Hi I am going thru the whipple procedure at loma linda on friday june 17th and I am scared to death. The dr told me I was going home with 3 tubes coming out of me, I want to come home and take care of myself he said I need help. Can anyone tell me what to expect? They are leaving my stomach. I have a 1.8 cyst with a growth coming out of it and they also have to remove my large spleen.

artt

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 !

Pancreatic enzymes

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!!!

 

Nelsonsummer1

whipple procedure

Hi I am 4 weeks post whipple procedure and I tell you it is hard work,  I am lucky I have a great circle of family and friends.  I am still scared for the future as I have to have chemo when I gain weight I am 48kg dropped from 56.6.  How much exercise are you supposed to do.  I get up from bed and walk around the house but then I am back to bed as exhausted.

curlee8661

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.

inoperable pancreatic tumor

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

 

survivor friend

after pancreatic cancer

Just to let you know, my companion had pancreatic cancer 25 years ago.  He had the Whipple procedure, no chemo or radiation.  This was at Mass General Hospital in Boston, MA.  He was told he would probably only live five years.  It has been nearly 26 now.  He is 90 years old. He has been experiencing some intestinal problems, mainly gas and abdominal discomfort of late.  The doctors cannot find a reason for it, but they believe it is related to his original surgery.  He has no other cancer.  We are looking for someone who had pancreatic cancer and is a long term survivor to determine if intestinal symptoms are not unusual after this length of time.  The doctors tell us there is no one else who has survived this long, but I don't believe it.

 

Oneshot

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. 

I agree

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"

Oneshot

after PC

Survivor friend,

Although my yrs. after the Whipple is not even close to 25 yrs.  I thought I'd reply to your post. 

My whipple was 9yrs. ago . To answer your question about intestinal symptoms after any length of time.  I've had them pretty much since the diagnosis.

Causes (in my case) can be from  the type of food, scar tissue from the proceedure reacting to changes in the weather ( I know, people think it's just joints that do that as we get older.  I WISH, just the joints hurting was the case! ) and can also be caused ( again , in my case) by body movement in some minor way that makes the abdominal muscles or internal organs that where involved in the Whipple, cramp or knot up.  My oncologist , after yrs. of me mentioning these symptoms . Told me he had just heard from another survivor who was going through the same ordeal(s). So my guess is your dr. told told you correctly. When they believe it is related to the original surgery.

Wishing you and yours the best,

Oneshot

 

 

 

Yukio1

Creon

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.

Oneshot

Yukio1 said:

Creon

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.

Creon

Yukio1,

Yes, Creon comes in various dose amounts per capsule. For instance my bottle of Creon is labled "CREON DR 24000 UNITS CAPSULE"

The amount of capsules to take with each meal or snack. Was started out by my oncologist, if I remember correctly!  Then was adjusted after a few more visits.  Make sure to note everything . How your stomach and intestines feel as well as checking your stools.They could be anywhere from constipated to very loose. Then let the doctor know. After a while I was able to adjust for certain foods. By taking one more or not taking one if, I had taken some an hour or so before with a meal and I was going to snack. It was sort of hit and miss for a while .   The key in my case was and still is keeping my weight constant. But each person is different . So make sure and remember to let your doctor know.

Hope that helps.

Oneshot

Timberskunk

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

My Sister is giving up too.....

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

Timberskunk said:

My Sister is giving up too.....

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 

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!

Oneshot

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!

Timberskunk

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

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!

Marken88

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

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

Marken88 said:

It sure would be nice as

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.

Marken88,

Marken88,

 Just want you to know. You have the right attitude. When you said " I will not give up." 

Keeping you and yours in prayer,

Oneshot

 

              

Cass83

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!

sent a request to create a forum

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?