Pancreatic Cancer Survivors

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!

Suggestion sent

I sent the suggestion to have Pancreatic cancer as it's own forum and they replied "Thanks so much for your suggestion. We are constantly striving to make CSN a better experience for our members. I'll take this suggestion forward to our support group and see if it's something that we can do."

cmb

Cass83 said:

Suggestion sent

I sent the suggestion to have Pancreatic cancer as it's own forum and they replied "Thanks so much for your suggestion. We are constantly striving to make CSN a better experience for our members. I'll take this suggestion forward to our support group and see if it's something that we can do."

Great suggestion

I'm also a visitor from the uterine board, seeking information on pancreatic cancer to help me understand what a friend is going through.

I'm glad you sent in the suggestion to have a separate forum for this cancer. Unfortunately I don't think that it's all that rare anymore and I'm sure pancreatic cancer patients, survivors and their loved ones would appreciate a dedicated discussion board.

Cass83

cmb said:

Great suggestion

I'm also a visitor from the uterine board, seeking information on pancreatic cancer to help me understand what a friend is going through.

I'm glad you sent in the suggestion to have a separate forum for this cancer. Unfortunately I don't think that it's all that rare anymore and I'm sure pancreatic cancer patients, survivors and their loved ones would appreciate a dedicated discussion board.

you're right

You are right about it not being rare anymore. We have had 2 people in our church alone have it in the last 5 years now. I don't like the odds of survival on it either. I do hope they get their own discussion board too.

Oneshot

Cass83 and CMB

Ladies,

           While I don't claim to be an expert for pancreatic cancer. I did survive stage 3 pancreatic cancer.   If I can be of help just let me know.

I'll give you any info on what I went through. If it will help you to understand what it is like to deal with this monster. Feel free to ask.

I'll try to respond quickly as I can.  I will say though. At present I'm helping my wife deal with her stage 4 papillary renal cell carcinoma w/mets to distant lymph nodes. She is in clinical trials . So, it is possible a day or so might pass before I log in. But I have been trying to check in every day when possible!

Take Care and GOD BLESS,

Oneshot

pacificlou

Stage 1

I recently had my Whipple surgery done on June 22nd this year and will be getting ready for Chemo treatments within 2 weeks. They removed the head of pancreas where the cancer was at along with 27 lymph nodes that were all negative, According to surgeon I was lucky where it was at and that they caught it before it spread. Just turned 68 and lost weight which in my case was good, I was overweight but not obese. I feel great with the exception of some stomach issues, little bloating and still sore from surgery. My concern now is the Chemo (no radiation) for the next 6 months. I've read and heard various stories so I am kinda up in the air about what to expect. I have a meeting with Oncology about treatments, schedules etc.. From what I've heard is that I am in the middle as far as treatments go, from barley having Chemo to the aggressive typ along with radition. What can I expect from the middle type of Chemo and how will it effect my weight and eating habits, what foods do I need to stay away with and will I be bed ridden after chemo. Any info you can provide will be appreciated. 

I hope and pray for your wife that she gets the correct treatment and the support needed to recover. I've been blessed with a good caring wife during this ordeal, it's not easy for anyone and I hope you and her get through this. 

God Bless

Deathorglory

Great to See a Pancreatic Cancer Board

Hello,

I think it's great that there's finally a pancreatic cancer board.  It's been a big hole in the site.  Hopefully, it will be full of survivors and others finding their way.  My father-in-law is a survivor.  He was fortunate to be diagnosed early.  He had his whipple surgery in 2010 at Johns Hopkins and he's still doing fine.  It can be beaten.

Best Wishes,

Ed

Oneshot

pacificlou said:

Stage 1

I recently had my Whipple surgery done on June 22nd this year and will be getting ready for Chemo treatments within 2 weeks. They removed the head of pancreas where the cancer was at along with 27 lymph nodes that were all negative, According to surgeon I was lucky where it was at and that they caught it before it spread. Just turned 68 and lost weight which in my case was good, I was overweight but not obese. I feel great with the exception of some stomach issues, little bloating and still sore from surgery. My concern now is the Chemo (no radiation) for the next 6 months. I've read and heard various stories so I am kinda up in the air about what to expect. I have a meeting with Oncology about treatments, schedules etc.. From what I've heard is that I am in the middle as far as treatments go, from barley having Chemo to the aggressive typ along with radition. What can I expect from the middle type of Chemo and how will it effect my weight and eating habits, what foods do I need to stay away with and will I be bed ridden after chemo. Any info you can provide will be appreciated. 

I hope and pray for your wife that she gets the correct treatment and the support needed to recover. I've been blessed with a good caring wife during this ordeal, it's not easy for anyone and I hope you and her get through this. 

God Bless

Chemo after Whipple

Pacificlou,

 Please excuse my spelling . I'm typing and not checking it. Trying to keep an eye on my wife. She's not feeling to well today.

              I'm sorry to hear that you or anyone has to deal with pancreatic cancer or any cancer for that matter!   I hopefully can shed a little light on what you might go through, in your follow up chemo after the Whipple. I can only give you an example. Drawing from my experiences.  I want you to know ahead of time. Each and every one of our bodies can react totally different to the exact same treatments.  I also had a 1/3 of my pancrease , my gallbladder,duodinium, part of my stomach,close to 2 ft. of small intestine, and 17 lymph nodes(neg) removed.  Like you I was hit heavy and hard with chemo (Gemzar) and rads before my Whipple. Then after a month to recover . I too started chemo after surgery.  Myself, I had a really hard time ! But years later my oncologist told me I was in the top 1% who get every possible bad side effect and even more so than most even in the top 1% !  But he also told me they had to keep hitting me hard after also. But, most of the other 99% don't get to much more than nausea, diarrhea and some pains from learning how to adjust to the surgery. Not to mention having to learn to eat smaller amounts during meals.  Like I mentioned each of us reacts differently. So keep that in mind and always keep notes on how you feel, what hurt ,what you eat and ANY supplements you might take. Then make sure and let your oncologist know.  You  said your wife has been a caring wife. Believe me mine was too!  She helped me take care of most of the things I just mentioned.

 I had lost weight down to 105 lbs. from 175 lbs.  In just 3 weeks (during time of diagnosis) . So eating for me was a huge issue during the pre and post Whipple times.  So you ask what to posibly eat and not eat?  Anything you can keep down with a few exceptions. And in your case you might even be able to eat them. I know folks might think this sounds funny in a wierd sort of way.  But due to what all I had removed/repaired. I could only eat and keep down (during my post chemo) was Girl Scout Thin Mint cookies with a little bit of grape juice. The grape juice was to wash down my CREON before eating 2 cookies.  This was the only things I could keep down at first while getting my chemo. But, I tried many things and might manage to get them down for a bite or two but usually it came back up!  I just figured I'd keep trying and having just a little food stay down. Even if most came back up. Was better than none at all going in. Over time my stomach and intestestines finally got streched out enough I was able to slowly but surely eat a few more bites. In time it got to where I could eat a small portion of a meal. Now I eat most anything that doesn't bite me first!  Hopefully you won't have to go through that type of ordeal to that extreme.  I will tell you this . When you are eating . REMEMBER to stop eating when you get to that feeling we all get ...That says " I think I can take a couple of more bites and I'll call it quits!"  When you get there STOP!!!!  If you don't you might get horrible cramps or your belly will get distended  and you'll think Tarzan is swinging on you insides with a vice grip! You will not enjoy it at all. Eventually you will be able to eat more but don't rush it. Eat several times a day but not a lot each time.  Whatever you can tolerate without making yourself hurt or get sick.  It is trial and error for each of us. But due to my stomach and intestines being cut on it was tough.  

  But, I found out Iceberg lettuce was a big NO in my case and I can only eat a very small portion of it even to this day! Strawberries early on . Due to the seeds on them. I can eat them now though!  Don't use straws to drink out of if at all possible and avoid gum BOTH CAUSE GAS to build up in your insides. Again, not fun!

If you losing weight is an issue. My nutritionist said Avacados and guacamolee were the best for keeping weight on or adding it! Better than bananas even!  So I learned t eat those. They do work!

I'm not sure if they have you on Creon. To take before your meals or snacks. But, in my case I found out eating any pork of any sort is limited to very small portions. Even today!   I have often wondered if this was due to Creon being made,in part, with pig pancreases. 

Spices, well I tend to not get real spicey food much. But, still eat cajun and mexican food . It just takes time and a lot of trial and error and it does get better as far as eating after chemo is over. Just be determined,careful and patient while eating. It does get better.

Oh, Chocolate was an issue for me and I only eat it in very small amounts. Again each one of us can be from one extreme to the opposite extreme when it come to what works for them.

As far as being bed riddin. Well, Due to my many things affected and removed or repaired  I pretty much was and had to sleep sitting up for some time. Mostly in a chair or pillows behind me in bed sitting up. I could get up and walk a bit. Say to the bathroom or such but I was really fatigued for sometime due to bleeding ulcers.  Just try to make yourself get up and walk as best you can. Just don't over due it. I added a further distance each week.  I live in the country so a trip to the mail box was my goal at first.  Fatigue is my main issue to this day.   I just can"t do it all day long like before. It took some time for me to get used to the new "NORMAL" for me.    But I have met or talked with others that have little or no issues with it. They were not bed ridden much at all.  

Since you had rads and chemo before. While getting chemo after the Whipple. Check your stools. If they come out and look like coffee grounds. Make sure and tell your doctor or his nurse if they give you a 24 hr. phone number to her.  This is a sign of bleeding ulcers. In my case the follow up chemo made the places where the rads had gone through show up and bleed.  Again, My luck of the draw!  I know that sounds bad to have to check ,but I did want to make you aware of the possiblity. But it's not the norm , I hear

I know I probably make it sound horrible .  Just because the things I mentioned happened to me.  I have heard that it was not the norm.  But I have been Blessed to make it through all of those and many more things!   It will have been 10 yrs. since my Whipple, this Sept.   So if my experiences can help anyone understand  I'll be glad to answer or try to explain. 

Take Care and GOD BLESS,

Oneshot

 

Marken88

My Experience

I was diagnosed June 26, 2017. Stage 2. Tumor about the size of a walnut on the head of the pancreas. After numerous tests, a biopsy, stent and the placement of a port I started chemo on August 4th, 2017. It damn near killed me. Lost over 100lbs, couldn't eat, dehydrated and spent time laying on the floor after I passed out. Nothing pleasant about it.

The tumor eventually started shrinking and on November 8th, 2017, I underwent Whipple surgery. The next morning my surgeon came an and we talked for almost an hour. He said I was now cancer free. He also stessed pancreatic cancer is a beast and there is a good possibility it will return.

The next month was difficult. Learning what I could eat, how much, and how often. Hydration was the most important thing. At least 200oz per day. I started eating mashed potatoes, cream of chicken soup, cottage cheese to get me going. After that it was almost back to a normal diet with a few exceptions. No salad, pork, or anything sweet. I gained almost 20lbs that month and started feeling fairly good. Slowly got my strength back and I could finally start working around the house.

There were some bumps in the road. If I ate something that didn't agree with my new system, I would be sick for a couple of days. Some vomiting, but after it was over I felt better again. You really won't know until you try different foods how you will react. It's a learning experience.

I felt really good until June of this year when I got really sick. Everything I ate came back out and I got really weak. Doc took a blood test and on June 21st I had a Pet Scan. On June 24th, 363 days since being first diagnosed, I learned it had come back...worse than before. My tumor marker went from 8 to 120. Cancer is back in the pancreas and also in 2 lymph nodes, but has not spread. The prognosis given me was terminal...6-8 months.

I was numb and mad. When the doc started talking about Hospice I got madder. I'm not giving up. No way in hell. I started chemo on August 14th and also a clinical trial. Right now I feel fine with no pain or discomfort. I'm eating fine and still working around the house. This time chemo had had no side effects except lack of sleep which was solved with some medication. Do I feel it's gonna help? Won't know until I complete 2 full cycles of chemo and then another Pet scan. 

Then I'll decide if it's worth continuing. My fate has been set and I accept that. But when it's time and I"m called to come home, I'll be ready for the next chapter to begin.

 

Ken 

Oneshot

Ken,

Ken,

     I hate to hear of your reaccurance and I do understand what you mean when you said you got "numb and mad" when a doctor "time stamps you". 

Could you post what the clinical trial is and which Chemo is being used?  I'm sure others would like to hear what is involved. Especially since you are able to eat and feel fine as well as pain free.     

I pray you get positive news on your next scan.

Oneshot

Tshields1972

Pancreatic cancer survivor 17 years and counting

I saw this article and wanted to let people know that my mother in law is a survivor of pancreatic cancer for 17 years now and still going strong.  She was diagnosed 17 years ago at age 58. She had a whipple surgery done at university of Pennsylvania hospital and today September 2018 she is in great health at age 75 and still going strong every day. I wanted to let people know that there are long term survivors out there. Stay strong and positive. If you would like any more info on her recovery send me an email. 

Tshields1972

My mother in law is 17 year survivor

My mother in law has survived 17 years so far.

Oneshot

Tshields1972 said:

Pancreatic cancer survivor 17 years and counting

I saw this article and wanted to let people know that my mother in law is a survivor of pancreatic cancer for 17 years now and still going strong.  She was diagnosed 17 years ago at age 58. She had a whipple surgery done at university of Pennsylvania hospital and today September 2018 she is in great health at age 75 and still going strong every day. I wanted to let people know that there are long term survivors out there. Stay strong and positive. If you would like any more info on her recovery send me an email. 

That's welcome news

Tshields,

          Thank you for posting about your mother-in -law being a 17 year survivor of pancreatic cancer.  It's always great news to hear of others beating this monster!

 

 

arayath

I am confirmed with Pancreatic Cancer and badly need financial help as I'm low income on Medicare but can't afford deductible for surgery and long time medicine for Chemo. I live near Conroe, TX, where can I get help?

AS

Steve1961

Hmm 5 mm ibmn cyst on tail

I just had my second MRI after one year there is no change in the size of the cyst. They told me most of the time this will be nothing. They say the only thing that we can do is keep an on it. .  They cannot take a biopsy unless it gets to be over 2 millimeters long . They found it accidentally when I had an MRI for my ribs because they were cracked this is quite scary  Doctor said there’s only a 3% chance that it could turn into something wow  any thoughts on this 

Oneshot

Steve1961 said:

Hmm 5 mm ibmn cyst on tail

I just had my second MRI after one year there is no change in the size of the cyst. They told me most of the time this will be nothing. They say the only thing that we can do is keep an on it. .  They cannot take a biopsy unless it gets to be over 2 millimeters long . They found it accidentally when I had an MRI for my ribs because they were cracked this is quite scary  Doctor said there’s only a 3% chance that it could turn into something wow  any thoughts on this 

Thoughts....

Steve,

With what information you posted. I'm not sure if it's an oncologist or a family doctor that is telling you this.  But, if it was me and I was worried  as you had mentioned. I'd get a second opinion .   Seeing how you posted on the pancreatic cancer board,  I'm guessing you were told it might be pancreatic cancer. With that in mind. I would find a doctor/oncologist that is dedicated to pancreatic cancer.  Have it checked out!   

That's just my two cents worth!

lorilaf

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.

Hi, my tumor was also

Hi, my tumor was also inoperable. I went to the West Cancer center in Memphis. Dr Michsel Martin is the best. With very strong chemo he shrank mine 30percent

 I had the surgery and now I am NED. Good luck and God Bless.

Oneshot

lorilaf said:

Hi, my tumor was also

Hi, my tumor was also inoperable. I went to the West Cancer center in Memphis. Dr Michsel Martin is the best. With very strong chemo he shrank mine 30percent

 I had the surgery and now I am NED. Good luck and God Bless.

Always glad to hear good news

Always glad to hear good news like yours!

Steve1961

Oneshot said:

Thoughts....

Steve,

With what information you posted. I'm not sure if it's an oncologist or a family doctor that is telling you this.  But, if it was me and I was worried  as you had mentioned. I'd get a second opinion .   Seeing how you posted on the pancreatic cancer board,  I'm guessing you were told it might be pancreatic cancer. With that in mind. I would find a doctor/oncologist that is dedicated to pancreatic cancer.  Have it checked out!   

That's just my two cents worth!

Thanks

sorry I took a while to respond ..yes I sought a specialist at UCSF ..The Dr. wasn’t concerned at all ..to small to biopsy being 5mm.i first went to a Dr my gasrologist referred me too ..well the KID wanted to see me in 1 year and do a biopsy.  The biopsy is no walk in the park ..I asked how much experience he had ..uhmm he just got his degree ..I fired them both ...the UCSF Dr specialist has 25 years experience.apparentjy at 5 mm it is so small they may not be able to get a biopsy ..she told me they see many of these of the tail and less than 3% of the time it turns into something but since they can’t be sure the only way to keep checking is with an MRI ..I don’t know how many years I will have to forgo mri but u guess it will be for a few anyway 

PancreaticSurvivor

IPMN Pancreatic Cyst Surveillance

There is a clinical study underway headed by principal investigator David Weinberg MD of Fox Chase Cancer Center in Philadelphia to study patients newly diagnosed with an Interductal Papillary Mucinous Neoplasm (IPMN). The study is being conducted at numerous cancer institutions and clinics around the US. More information can be found here- https://ecog-acrin.org/clinical-trials/ea2185-educational-materials

Fox Chase also specializes in the diagnosis and treatment of different kinds of pancreatic cysts. Detailed information on cyst types, diagnosis and treatment at this link-

https://www.foxchase.org/clinical-care/conditions/pancreatic-cancer/pancreatic-cyst

 

 

Yuppitsme

New here—looking for support

Good day and Happy belated Thanksgiving (which now means so much more now--I'm grateful to be here!)

Here's my story ina nutshell:

Adenocarcinoma diagnosed in August 2020. Underwent 6 rounds of Folfirinox followed by the Whipple surgery in December 2020. My stomach was able to be spared, and I didn't become diabetic. I was staged at 2b at that point. I had another 6 rounds of Folfirinox post surgically with a 3 week break because my liver enzymes flipped out--liver specialist said that I needed to wait a couple of weeks--I finished the 6 rounds without further incident.
I was fine until they found another tumor recently (in September 2021). This one is in my pancreatic bed (but is attached to my pancreas). i began Folfirinox again. Had a Celiac Plexus nerve block for intense pain (apparently the tumor was leaning on nerves) which is now returning. Sometimes, I believe he actual chemo might kill me (the side effects, I mean). My oncologistic seems to think that chemo is my best shot. I'm not sure about that. I'm not sure about ANYTHING. I've been reading others'experiences, and am happy to be here.

I'm very fortunate to live in CT; I'm at Yale. 

Im happy to have found this site. Thanks for letting me tell my story.