New Pancreatic Cancer Discussion Board

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 said:

mass on head of pancreas

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

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 said:

Pancreatic cancer (endocarcinoma)

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

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

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,

              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

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.

Oneshot said:

Coachcarp,

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

 

 

Dear. A mother's friend has recently detected pancreatic cancer, stage 4, with mets in liver and lung. She is starting chemo today if she is recovered from anemia. Please, if you have any information about pancreatic cancer stage 4 that you could share with me I would be really grateful. 

In fact I have some questions:

-Is it possible to opperate it in stage 4 with mets?

-What are the side effect of chemo? (I don´t know yet which kind of chemo she will take) but I guess there are common side effect, even knowing that each case is different...

-Any hope, advice, trial, repport etc please share with us! My email is presenteesunregalo@gmail.com 

Thanks, and sorry for my spelling, im from Spain

Meatball63 said:

Mom Diagnosed Stage III Pancreatic Cancer In Head

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.

My 71 yr old husband is almost finished with his 6 month worth of chemo treatment to shrink 2.1 cm pancreatic mass discovered in Aug 2019. He has tolerated the chemo (4 meds together) well, infusions as outpatient every 2 weeks with the 5FU  meds ball to go home with for 48hrs. Now we get CAT scan and see where we go from there. Initially there was no pain in July, but plenty of pale stools and then extreme jaundice set in due to ductal blockage. Had 2 stent procedures because the first stent was too small to do the job. Would like to hear from post Whipple patients.

Hello to everyone on this pancreatic cancer board.  My name is Lesley, female, widow, now age 70, and I was diagnosed last June 7, 2019 age 69 with Stage 4, adenocarcinoma, pancreatic cancer.  They found one small tumor in the tail of my Pancreas and many throughout  my liver.  I was in shock.  My daughter had dropped me off at the ER and I told her not to wait; I would call her thinking it was just maybe my gallbladder or something not too serious making me nauseous for so many days.  Never thought of cancer.  Well I was admitted and then had to call my daughter not just to pick me up but to tell her the devastating news.  I am a retired nurse and had heard about this not being easy to survive.  At first, I felt so ill I didn't want to do chemo.  My 4 grown children didn't want me to give up.  I had a Bard port implanted for chemo but thinking I could use that if I had to go in Hospice for comfort medications that was my alternate thinking. I started onto my first chemo in the end of July 2019, it was the Folfirinox regimen.  This stuff, which included the take home pump, did nothing for me but make me ill and I ended up in the hospital with neutopenia and cdiff and my tumors were not phased and actually increased in size.  In Dec 2019 I was started on Gemzar and Abaxene every 2 weeks.  This makes me get high fever and about 5 days of yuck after the chemo.  As of my last scan, April 28th 2020 every tumor was gone!  Or as they say, if you have stage 4 you always need chemo to keep them from coming back. My tumor markers are down in normal range and treatment right now every 3 weeks instead of every 2.  My doctor is watching me carefully with the tumor markers.  I am also giving All Glory to God.  Prayer is a most important part of your well being and the more that pray for you the better, Prayer Warriors!  I am praying for this miracle because I know full well it is a miracle to survive stage 4 of this cancer.  I will share with you whatever I can.  Alex Trebek was diagnosed 3 months before me so I always look for how he is doing as my beacon.  I pray for everyone fighting cancer.  I do not carry the gene but my aunt died from this.  All my past relatives are in England, as my mom and dad came here after WWII.  No one remembered about our Aunt Dorothy or what type of cancer she had; and it was not impressed upon us about her cancer. How important family history is.  This can run in families and I don't believe it is necessarily from one particular gene.  This only proves how different each case is and our unique chemistry. One drug works for one person but not the other.  Hopefully, they will come up with the cure for this very soon.  I hope to hear some hopeful outcomes from anyone fighting Stage 4 Pancratic cancer.

1jw1 said:

chemo

My 71 yr old husband is almost finished with his 6 month worth of chemo treatment to shrink 2.1 cm pancreatic mass discovered in Aug 2019. He has tolerated the chemo (4 meds together) well, infusions as outpatient every 2 weeks with the 5FU  meds ball to go home with for 48hrs. Now we get CAT scan and see where we go from there. Initially there was no pain in July, but plenty of pale stools and then extreme jaundice set in due to ductal blockage. Had 2 stent procedures because the first stent was too small to do the job. Would like to hear from post Whipple patients.

 

 

Good evening I hope you are doing well I have a quick question a friend of mine had the tumor marker for pancreatic cancer recently and it came back at 458 I was just wondering if your husband's tumor marker was elevated at the time of diagnosis