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New Pancreatic Cancer Discussion Board

CSN_Hillary's picture
CSN_Hillary
Posts: 10
Joined: Sep 2013

Welcome to the new Pancreatic Cancer discussion board. Previously, pancreatic cancer was part of the Rare and Other Cancers board, which is where you will still find all of the previous pancreatic discussions. We've moved over two discussions to help launch the new board.

Thank you,

Your CSN Support Team

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Thank you for helping us in getting this to happen.

JulianaMoon's picture
JulianaMoon
Posts: 1
Joined: Sep 2018

Hi.

I am new here.

I found out yesterday from my mother that she has pancreatic cancer. They think it may have spread to her liver. They are doing a PET scan and biopsy next week.

I haven't stopped crying since she told me. Her Drs told her and my stepdad it is "treatable". From what I have read about pancreatic cancer, the fact that she is 81 and diabetic, and since it may have spread, I am assuming that this is a death sentence.

 

I have been very sick and the Drs are running tests on me. I have COPD and am in bed most of the time with shortness of breath. I haven't left the house in almost a year, except to go to Drs. I have gained 100 pounds and its hard to walk.

My mother is my best friend. She has been my rock thru everything I have been thru. Now she needs me, and I don't know what to do.

We have talked every morning for 30 years. Now, I don't know what to say. If I should bring it up. And I want to spend time with her and help her but I am so sick. I have a rare form of anemia also.

If I could, I would rent an apartment nearby her. I can't afford it. I am on SSD and have a mortgage on my house. 

I feel like I am failing her. I don't know how to be there for her. She asked me to go to the circus with her and my stepdad in 2 weeks. I know that the hay and animals and walking will make me very sick. Possibly put me in ER. It broke my heart to tell her I couldn't.

Can anyone tell me how I should act, and what I can say to show her I'm not abandoning her, and I love her so much. 

Thankyou.

 

 

Ktmc
Posts: 5
Joined: Oct 2018

my sister just had a cat scan and they found a mass on the head of the pancreas. Anyone familar with this? 

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Ktmc,

           I had stage 3 pancreatic cancer involving the head of the pancrease and several other organs in 2008. While I'm not sure what kind of answers you are looking for.   Knowing that each person's cancer and it's treatment can vary. While I could possibly give you some insight from my own experiences in my battle with pancreatic cancer and since your sister just found this out.  I might suggest a couple of things to you.

1) Make sure your sister finds an oncologist that is specialized in pancreatic cancer.  Also, if surgery is needed.  Make sure the surgeon is also specialized in pancreatic cancer.  While the doctor/ oncologist she is using might be good and well intentioned.  You want the doctors who are specialized in her type of cancer.  If she has lost weight also get her a nutrientioinist.

2) Keep notes on everything she experiences, both good and bad.  This will help her oncologist greatly as well as you and your sister. There will be a lot of things going on and it can be overwhelming. It can be really hard to recall  everything.  So, keeping notes can help her a lot with symptoms and any questions she needs to ask or tell the oncologist about.

3) Check out the site called PANCAN.org    It deals with only pancreatic cancer  for both the patient and the caregivers. I think it even has folks that are there that you or her can call.

Keeping you and your family in prayer

Oneshot

 

 

Leeane
Posts: 1
Joined: Oct 2018

Hello Oneshot;  My name is Leeane and just now joined CSN.  I, too, have stage III pancreatic cancer which was discovered following a CAT Scan this past December.  I initially underwent 4 chemo treatments to reduce the size of the tumor so that surgery (Whipple procedure) could be undertaken to resect the tumor.  Unforturnately, the surgeon was unable to remove the tumor due to interference with major veins in the vacinity of the head of the pancreas.  I was not satisfied with the oncologist and have since changed to a new one that was recommended.  The new ocologist now wants to use a combo of Gemzar and Abraxane to theoretically reduce the size of the tumor so that hopefully the tumor can then be resected.  Before starting this new treatment, I applied to a clinical trial and was very hopefull that a new approach (immuotherapy) would be the answer.  Unfortunately, I was not accepted due to the fact that my cancer was not considered Stage IV.  

Do you have any suggestions or thoughts about Gemzar/Abraxane, or any other type of treatment that you think I could pursue and that you have had experience with.......best......Leeane

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Hello Leeane,

                  I saw that you had posted about changing oncologist  who suggested Gemzar/Abraxane.  While My oncologist did give me Gemzar. I did not recieve Abraxane.   I'm hoping you found an oncologist who has a lot of experience and speicializes in pancreatic cancer.  I was very lucky to have both an oncologist and a surgeon who both were.

I received both rads and chemo before my Whipple. It was 30 days of rads and chemo (Gemzar) once every week also. I think I also kept doing the chemo for a few more weeks after the rads were through.  Sorry I don't remember the exact amount weeks of chemo after the rads. It's been 10 years.  I do know that after the chemo and rads were through. The oncologist had me wait a month until my Whipple. Like you, I had a major artery and veins involved as well as my stomach, gallbladder, duodenum, 17 lymph nodes and 2 foot of small intestine.  So I had to wait a bit untill I started my next rounds of gemzar. 

I'm pretty sure you already understand, seeing how you have had chemo before. That each of us can have either very few side effects to the chemo or we can have every bad side effect chemo has to offer.  Well, I fell into the second catagory !  With a few the oncologist had never seen before. But, according to my oncologist. I was the exception on getting so many bad side effects. But , I can't complain. I'm over 10 years at this point!   I do apologize that I have no experience with Abraxane that I could share with you.

I did find a site that I wish I had found sooner in my battle.  It's Pancan.org.   You might well have already know about it but, I want to make sure you or anyone else who reads this post.  Finds it a lot sooner in their battle with PC than I did.

Prayers to you and yours

Oneshot

 

 

 

 

coachcarp's picture
coachcarp
Posts: 3
Joined: Feb 2019

Hello to all you brave souls! This is my first post. My wife was just diagnosed with stage IV pancreatic cancer on December 17, 2018. She was never sick and didn't miss work due to any illness. In one night our lives changed forever and our path through life began a new and challenging journey that will forever be remembered as a turning point to something greater than we could have ever imagined.

 

coachcarp's picture
coachcarp
Posts: 3
Joined: Feb 2019

We thank the Great Spirit our Lord for this Blessed Journey that he has chosen for us and promise to make great what would seem to be tragic. Our Faith is Strong and we both know that at the end of this Journey He has put us on there is no losing. We will continue this path as thankful survivors of this disease with an entirely new appreciation for the life we were given or accept our journey's end sitting beside the Great Spirit our Lord, disease free and out of pain. There is always Hope.

coachcarp's picture
coachcarp
Posts: 3
Joined: Feb 2019

Hello Oneshot,

I hope you are still doing well.  You are truly an inspiration.  Just a note, the photo you have of the stork and frog is an illustration I have posted everywhere I have been for the last 30 years to inspire me to greater things!  It makes me feel connected to you through spirit and energy... Thanks for the reminder my Brave friend.

I have many questions for you and maybe some answers.  I have been heavily into research for well over 300 hours since my wife's cancer was diagnosed and my mind has been opened to so much knowledge at times it has become overwhelming but settling as well.  Your spirit is good and we appreciate your reaching out to everyone.  Thanks.

Oneshot's picture
Oneshot
Posts: 149
Joined: Jul 2009

Coachcarp,

              I just happened to be checking this site way late in the evening/early AM .   I saw your post(s)  and figured I'd give you a quick reply to let you know .   If there is any way I can might be able to help , by giving you any insight from my experience with pancreatic cancer.  Feel free to ask.   If it is something you don't want to ask in a public post . You can click on the photo of the stork and frog and it will let you look at my bio and also send a private message to me.  Either way is fine with me. 

I hate to hear about anyone having to battle this type of cancer. For that matter any cancer.  

I am in the same boat you are in, with my wife having stage IV Papillary Renal Cell Carcinoma w/ Mets to distant lymph nodes . We found out in April 2018.    With that being said, Some might say my wife and I have swapped sides of the fence . So to speak

With what you had posted . It looks like you and your wife's Faith has given both of you a positive and strong foundation. That's a plus when dealing with cancer!  

Again, feel free to ask questions, vent, etc.   

I check the site pretty much every day.  

Prayers and Well Wishes to you and your family,

Oneshot

 

 

Aayesha
Posts: 1
Joined: Mar 2019

Hi,

 

Last week(22nd march 2019) my father was not able move or sence his leg because of blood clot in one of the vein in brain and due to that the blood was not flowing properly. We had blood thining process on him and now he is able to move his leg(with support). He has abdomen pain as well and we had CT scan and he has been diagnosed with Pancrease Cancer with stage IV which is non operable and spreaded to liver and other parts of abdomen. We have heared about adverse side effect of chemotherapy and we have big question now whether to go for Chemo or not(as many of our friends who are surgerian have suggested to not to go for chemo) and if yes which one should we preffer Oral or IV?  

Can anyone help me on this?

Meatball63
Posts: 1
Joined: May 2019

With a heavy heart I must state my dear mother was diagnosed with stage 3 Pancreatic Cancer on April 2, 2019.  The tumor has encased her portal vein so operation is not safe right now.  She is 71 and due to her being in good health the surgical team and her oncologist have agreed to agressivly hit the tumor with chemo to try to reduce the size for a more safe removal.  She had her first 5 hour treatment this past Monday and was sent home with a portable pump.  This is a hell of a lot of drugs for a 71 year old woman an I see her appearance rapidly declining after only three days.  Has anyone on here seen this type of aggeesive chemo before?  Will it get easier for her?  The only thing I can get her to eat is a smoothie in the morning.

superjay
Posts: 1
Joined: May 2019

Hi Meatball, 

This is a hard diagnosis to have handed to you.  My wife was also told by my doctor in March of last year that I had stage 3 (originally classified as bile duct cancer but when reviewed again, found to be PC).  I believe the goal is to get the tumor to a point where it is operable.  And chemo can be so hard.  I was not given a pump as part of my treatment, so I can't speak to how or if that may improve.  Hopefully, a dietician or 'wellness nurse' is part of your mother's care team.  And if you don't have one yet: ask for one.  Between my emergency ERCP and my eventual surgery (a Whipple), I was told to eat whatever I liked that did not cause distress.  And what my dietician told me is this:  a calorie is a calorie, and your body needs them.  Since my surgery (June of 2018), I've lost considerable weight since then (24% of my body weight) and keeping calories coming in is key to my ongoing health.  The same may be true for your mother.  Honestly, my wife has been my savior thru this by her love, her dogged determination, and what she's getting into my body.  

 

Some food topics / ideas that may be helpful to you:

  • Centenarian diet
  • Blue Zone diet
  • Mediterannean diet
  • "Eat the Colors of the Rainbow With These Clean-Eating Recipes" source:  www.onegreenplanet.org
  • Anti-inflammatory foods

Of course I'm not a doctor, so talk to the team taking care of your mother.  It is my sincere hope that she can make it to surgery.  My thoughts are with you and your family.

 

 

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