Hello! I'm looking for some ideas for a care package to send a relative recently dx with PC. He will be starting chemo and I want to send some gifts with that in mind. I thought of a handmade lap afghan, thc gummies (suggestions on brand/strength?), protein shake powder, emesis bags, etc. Anything else that will be really helpful? TIA

My dad has PC and there has been some mention by some of clinical trials. Who is normally eligible for these and what is the benefit? I don’t really know anything at all about them.

My mom (66) has been getting her chemo here for the past 4 treatments and we’re coming up on 5 her c-19 numbers have been going down I believe she started at 6,000 and is now down to 1,000 which is good, but this subreddit has told me these numbers don’t really indicate that much.

We’ve had gremline? genetic testing done at MSK and no targetable mutations were discovered. We’ve tried asking about clinical trials and what not but they barely entertain anything at UVA. To UVAs credit they seem to really focus on quality of life and to say my mothers quality of life has improved in the past 4 treatments would be an understatement. she went from being bed ridden to getting up and going outside and even driving herself places. Maintaining weight and diarrhea seem to be the most pressing symptoms as of now, but compared to her initial symptoms these are manageable.

At the same time though I feel like we’re not doing enough she’s getting standard forfirnox but that’s it. no talk of clinical trials no one at UVA really seems to keen on helping us enroll in one or educating us about clinical trials.

I get the vibe that they just throw people on chemo and wait until that stops working and send you packing. I understand how devastating this cancer is and how hard it is to treat and that there may be nothing aside from chemo, but I’d like to pursue something rather then just wait.

If the following is true, shouldn’t all patients with IPMN proceed to surgery or at minimum ablation? so much confusion on this.

What is the 5 year survival rate for IPMN?They typically have high-grade dysplasia and eventually become pancreatic cancer. Approximately 70% of people with this tumor type are alive five years after diagnosis. The survival rate drops to 50% 10 years after diagnosis.Jun 2, 2022

Intraductal Papillary Mucinous Neoplasm (IPMN): What It Is

📷Cleveland Clinichttps://my.clevelandclinic.org › health › diseases › 231...

Does anyone know what is standardly tested or looked for in the pathology sample from an EUS FNA?

Does pathology routinely for test Mucin1 (MUC1)? I know that CEA is routinely tested in pathology, but wondering if anyone knows of what else is standard.

Trying to make sure I make the right decision on who and where to go to get my EUS FNA. I don’t want the effort of this whole procedure to be wasted if pathology is sent to a lab that doesn’t do an extensive review based on the current literature.

Thank you.

I don’t want to trigger anyone- so don’t read if your mental health is fragile right now.

My mom (81) was diagnosed with Stage 4 Pancreatic Cancer in August of 2023. She had had breast cancer in 2015, and had a horrible time with chemo, so she decided to not do palliative chemo and let it take its course. I respect and stand by her decision 100%. She is the bravest and strongest woman I’ve ever known. She passed, in her bed, in her own way, at 7:49 this evening. I was there, one of us stayed with her until we asked hospice to call the funeral home, and I am wearing her wedding ring now.

Blessings:

She was not in any pain, she was peaceful, she was comfortable in her own bed, at home. Marijuana: pure THC gummies (she took 1/2 of a 10g gummy about 9:00 in the morning, and by 10:00 she would be hungry, by 11:00 she’d take a nap). She also used Wana Fall Asleep Gummies. At the end, we used a liquid THC & CBD tincture, when she asked for it. Both my parents strongly oppose MJ, but it is legal here. Her oncologist and primary care heavily recommended it, and the hospice nurses at the end. She preferred it over other anti nausea options at the end.

Hospice nurses: Fucking amazing, rockstars, they don’t get paid enough, and the Lord will reward them mightily.

The Ugly: in the early months, the fucking right wing assholes convinced my parents (who are also right wing) that dog de-wormer would cure her. The girl that came to explain to them how to use them, how to contact the vet for information, etc. was covered with scabs/meth head like (trust me, I fucking know). My dad gave her $500 and thanked her profusely. After she started taking it twice a day, her diarrhea increased dramatically, but when my mom said she didn’t want to take it anymore, my dad pushed it. I don’t know how much he paid the “prescribing vet”.

The horrible ugly: I am sitting at my rented cabin (my MS kicked in due to stress) with my stuff in another town all alone. I am safe-I’ve talked to my therapist, my landlord is my best friend since I was 3 yrs old- but I have been completely shut out by my father and brother. It’s a long complicated family history, but having my brother accuse and tell me he blames me for causing my MS by smoking. WTF. My father telling me I was not allowed to ask the doctors any questions, and, 4 days ago, me asking my father if I could stay with my mom that night, and he said No, I don’t need you. I asked mom if she wanted me to stay with her that night, and she said, “Yes, but he won’t let you.”

I don’t want to type this shit, but that hurts, so bad.

I take comfort knowing I didn’t leave her alone when she passed. I held her hand, talked to her, prayed over her, until they came, unlike my brother and dad.

Peace be with all of you during this time. Pancreatic Cancer Sucks Major Ass. Pray to your God, spend as much time as you can just being with your loved one. And take care of yourself, too.

Hi All,

I've been following this thread and have seen folks warn against some well-known cancer treatment hospitals that specifically are not great for stage 4. My mother (who will be 74 in July) was just diagnosed with Stage 4 Pancreatic Cancer that had metastasized on the liver. She lives about 45 mins outside of Philadelphia, and as such is looking at UPenn for supplemental opinions from Reading Hospital, where she was diagnosed. I've heard great things about NY Presbyterian, and great things also about UPenn but mostly for other cancers, not specifically stage 4 pancreas. Anyone have recs for places that specialize in stage 4 aggressive/innovative treatments? Any and all advice is welcome. These are new and overwhelming waters.

My stepmom has been declining over the past few weeks but it seems to have ramped up over the last week and a half. She’s had a bit of confusion off and on for a bit but this week it’s much worse, now with added hallucinations and “memories” of events that never happened. Her BP is running low often and her o2 has dropped to 80-83% at times (on oxygen now). Weight wise she had lost around 50 since November but gained 6 recently (yay!), but is not eating or drinking much. Labs yesterday were good. She’s scheduled for chemo next week and I’m hoping she can tolerate it. She’s missed the last few weeks because she was too sick. 😔

She’s been on a pretty steady dose of morphine for a bit now and I’m wondering if the confusion is part due to that plus the dehydration that they’ve been trying to fix. The only “good” thing about the confusion is that she doesn’t seem scared or sad, so I’m thankful for that.

Her oncologist said that she’s pulled back out of a low spot before so maybe she’ll do it again. 🤞 I’m really hoping so but also incredibly worried that we’re coming closer to losing her.

This is so hard.

Hi everyone! My dad (63M) recently just got diagnosed with pancreatic adenocarcinoma with liver mets in March 2024 and is about to start his second round of chemo (FOLFIRINOX). Been a little bit of a lurker here and just first off wanted to say thank you to everyone for sharing information with this crazy cancer.

Looking to get some information on whether anyone has had any success with surgical candidacy and/or surgeons anyone would recommend looking into for pancreas + liver mets in the California Bay Area or Sacramento region. We would be open to hearing about Southern California also.

Also, what is the best approach to getting second/third/multiple opinions? Been a bit overwhelmed with my dad’s diagnosis but happy to get any advice.

Of note, I have reached out to PanCan and asked for the list of clinical trials. We did a blood genetic test and the following was found: SMARCA4 c.3278G>T (p.Arg1093Leu). If there’s anything else that I should be thinking about, please let me know.

Thank you so much in advance!

Mom had 2 rounds of Flofirinox and at her 3rd infusion blood tests indicate her CEA rose but the CAQ19 decreased. Nurse said the CEA is non specific. Can someone please explain that to me?

My grandmother (72) found out she had pancreatic cancer a month ago, she had her first session of chemotherapy 2 weeks ago. Before chemo, she was already throwing up every time she ate something and was starting to feel weak. After her first session she started throwing up more frequently and having diarrhea as well. She's extremely weak now, lost 11kg, her voice is so low that she can barely speak. Are those symptoms a sign of her last days or from chemotherapy? She will have her second session next week.

I'm devastated. My grandmother helped my mom raise me and I have lived with her my whole life. She's like a second mom to me and I'm so scared of losing her. It's so painful to see that her life now consists in having pain, vomiting, not eating, being in bed all day.

If someone knows anything that could help with any of that I would appreciate it so much. Any good medication, food, supplements.

For all the people going through this I wish you all so much love and strength.

Hi everyone.

My mum (61) was diagnosed with 1b pancan in November of 2023. After undergoing surgery to remove the tail, spleen and part of her stomach. They said she said clean margins but found cancer cells in 4 out of 8 lymph nodes they tested. She was scheduled for chemotherapy 6 weeks after surgery but unfortunately suffered an infection at the drain site and this led her to be to weak for chemo.

Four weeks ago, mum went into hospital with a stomach pains and underwent scans. They discovered an obstruction of the small bowel caused by more cancer. They did an ileostomy to give mum a way of eating/drinking and said this was a palliative measure as they have also found metastaties to the perineum and two on the liver.

We have the appointment with the oncologist tomorrow to discuss palliative chemotherapy. I'm just looking for any advice on questions we should ask? And also any advice in general. As after surgery we thought she'd be ok, but now that's not the case.

There was 28 lymph nodes tested… 1 came back positive.

What does this mean. Pretty devastated. Need some encouragement

After clear CATS for 2 years ,my husband went to 6mth check - in his first one,a “hazy mass” was discovered to have developed . ( he had ok bloodwork in between) They decided to offer only standard of care and no other plan. They claimed they had been watching it but never mentioned a mass or anything until now.It hasnt been staged and only recently did they decide to request biomarkers testing.

So far , we have had one positive consult with doctors. They want more information and are willing to be aggressive about looking for solutions. Not only has this been the most devastating experience of our lives but we have been shocked at the way we have been treated.

We just had appointment at one of the “top” hospitals in NY and the doctor was completely unprepared and quoted from the original team’s notes. She basically dismissed us and literally said “Good Luck”

Obviously, we are not stopping at that until we get a clear consult from someone who is actually willing to work with us. My husband is young ,in good health and not showing any symptoms.

Is there a way to prevent this type of interaction again? I would rather not go than sit through another psychologically damaging experience like that again. We cannot live happily with the idea that he will be on chemo therapy for the rest of his life because nobody is willing to try anything else.

I hope I don’t sound whiny - I just want to get a grip on this.

Hello just wondering how everyone health is with stage 2 and post whipple. My mom is on her second year of post whipple but recently her ca19-9 markers have been rising to 200

Anyone else have any experience with smokers? My dad was down to a pack a day up until he went thru radiation, About midway thru radiation, started having encephalopathy every other day for a week, then the final week he was somewhat okay. The week following radiation was probably one of the best weeks he's had in about a year (even though he is still minimally functioning due to COPD and all that stuff.. Then the last 2 weeks he went from smoking 1 pack a day to smoking 2-3 packs a day, just ripping through them one after the other after the other. Just no rhyme or reason for it.

I'm just at a loss. It's hard not to be extremely pissed off at him, as I spent way too much time looking for alternative doctors when his original doctors and oncologist would write him off, found a decent oncologist who was hopeful with radiation... Just did all this leg work, and the financial toll it took on me the last 2 years.. Just frustrating. I don't know what to do or how to help him.

Unfortunately, my family and I are beginning to have very different opinions on Jack’s (54 otherwise healthy male, diagnosed with stage1 pc in late October, 12 weeks chemotherapy with tumor shrinkage, but .8mm malignant spot at post scan/exploratory surgery. I am focused on clinical trial matches via PanCan but my sister is leaning towards a “friend of a friend” comment, urging us to stay the course with current oncologist, predicting, we are doing rhetorical best, with the best. Curious how you would respond to this “explanation with status quo… btw- Jack is one to all options and willing to travel..I just can’t accept that Dr Bauer TN Oncology is deemed the best in the country for PC. ——-copy of communication from Dr at Tn speaking about his colleague; TN Oncology and Bauer have the most experience in clinical trials pretty much in the entire USA. The only group that is involved in more is M.D. Anderson in Houston I believe. As I said, my good friend who just died was one of the founders of TN Oncology chose Bauer and was on clinical trials including immune therapy. He should pick a doctor he feels comfortable with but would not expect different answers or outcome....unfortunately. Good luck to all.

AI can Detect 3 of the Deadliest Cancers in Minutes – from just one Drop of Dried Blood

• Post published:April 24, 2024
• Post category:news

AN AI-POWERED test could detect three major types of cancer using just a drop of dried blood, a study suggests.

It could help reduce undiagnosed cases in less developed countries around the world by up to 55 per cent, they said.

Lead author Ruimin Wang, of Shanghai Jiao Tong University, said: “Over a billion people across the world experience a high rate of missed disease diagnosis.

“This highlights the need for diagnostic tools showing increased accuracy and affordability.

“Our approach allows diagnosis of multiple cancers within minutes at affordable cost.”

Bowel cancer is now the third most common cancer in Britain, with 41,596 Brits diagnosed in 2021.

It is the UK’s second deadliest cancer, claiming 16,000 lives each year.

There are around 6,500 new stomach cancer cases annually in the country, while 10,500 people are diagnosed with pancreatic cancer.

Survival rates of all three are much higher if the cancer is spotted earlier, with researchers constantly looking to improve ways of testing for the disease.

Most current blood tests for the diseases use liquid blood to spot markers of the cancer, and are not powerful enough to diagnose any of them individually.

Dr Chaoyuan Kuang, of the Albert Einstein College of Medicine, who was not involved in the research, said using dried blood could be a gamechanger.

He said dried blood can be “collected, stored and transported at much lower cost and with much simpler equipment”.

He told Live Science: “This could help democratise the availability of cancer early detection testing across the world.”

he tool uses artificial intelligence to analyse biomarkers in the blood, and was tested in proof-of-concept, preliminary experiments.

AI can Detect 3 of the Deadliest Cancers in Minutes – from just one Drop of Dried Blood

• Post published:April 24, 2024
• Post category:news

AN AI-POWERED test could detect three major types of cancer using just a drop of dried blood, a study suggests.

It could help reduce undiagnosed cases in less developed countries around the world by up to 55 per cent, they said.

Lead author Ruimin Wang, of Shanghai Jiao Tong University, said: “Over a billion people across the world experience a high rate of missed disease diagnosis.

“This highlights the need for diagnostic tools showing increased accuracy and affordability.

“Our approach allows diagnosis of multiple cancers within minutes at affordable cost.”

Bowel cancer is now the third most common cancer in Britain, with 41,596 Brits diagnosed in 2021.

It is the UK’s second deadliest cancer, claiming 16,000 lives each year.

There are around 6,500 new stomach cancer cases annually in the country, while 10,500 people are diagnosed with pancreatic cancer.

Survival rates of all three are much higher if the cancer is spotted earlier, with researchers constantly looking to improve ways of testing for the disease.

Most current blood tests for the diseases use liquid blood to spot markers of the cancer, and are not powerful enough to diagnose any of them individually.

Dr Chaoyuan Kuang, of the Albert Einstein College of Medicine, who was not involved in the research, said using dried blood could be a gamechanger.

He said dried blood can be “collected, stored and transported at much lower cost and with much simpler equipment”.

He told Live Science: “This could help democratise the availability of cancer early detection testing across the world.”

he tool uses artificial intelligence to analyse biomarkers in the blood, and was tested in proof-of-concept, preliminary experiments.

Hi all! My mom (59F) was diagnosed with Pancreatic Adenocarcinoma in October 2023. She completed 6 rounds of Folfirinox, after which she had an Appleby surgery in January 2024 - they kept the head and removed the neck and tail. The surgery was successfull, clear margins, no lymph nodes or vein involvement, no metastasis. Yesterday, 3 months after the surgery, she had her scans that showed 6 liver metastasis.

She is scheduled to start chemo again next week.

Any advice/positive stories and out outcomes/tips would be greatly appreciated!

My friend with stage four pancreatic cancer with lung metastases was admitted to the hospital on Tuesday. Our other friend took her for a regularly scheduled oncology appt, and they were sent to the ER. I am dog sitting until Friday, so I am getting everything 3rd hand.

She has a buildup of fluid (she says around her gallbladder (which she had removed 30 years ago??)) that is septic; this is the third occurrence of this. She was having a tube placed down her nose to drain the fluids. The gastronomy surgeon came in and basically told her that with the growth of lung mets, she will need to think about 2 options: Enter into palliative care, or have surgery to bypass her pancreas, joining her stomach to her small intestine.

He told her the surgery is very hard on people, that she will need to realize she will be in and out of the hospital, but this may extend her life 2-3 months. Friend doesn’t know the name of the procedure, so I am tentatively assuming it is a biliary bypass.

Has anyone had that, or had experience with that? I read a couple of PubMed articles that frankly were disheartening with results of this surgery. Is it is awful as it sounds?

Hi all, My dad was recently diagnosed with stage 2 pancreatic cancer following a biopsy( Apr 10), and was told he would receive a consult to Hepatobiliary within 1-2 weeks and hopefully get the Whipple sx post consult. It’s now been exactly 2 weeks with no news/update 😢 How long did most of you wait to hear back post diagnosis and how long did you have to wait for surgery? I am located in Alberta, Canada. Thank you in advance for all the support. 🫶

Just something i thought I would share . There is a YouTuber I have been following called "shedareslive" who was diagnosed with stage 4 with liver mets in August of 2022 and is still living without doing chemo(as chemo was too harsh on her ) and simply relying on diet/supplements/lifestyle changes. Just thought it is something I would share given I have not heard of this happen to anyone before.Not advocating for this but it is interesting.

My mother is due for cycle 10 of 12 of adjuvant FOLFIRINOX. The previous cycle, they had taken the Irinotecan out and switched her to FOLFOX due to suspected liver toxicity. Her next cycle has been delayed because of rising bilirubin levels - it's currently at 91.

Her oncologist has ordered an early CT scan to see if the rising bilirubin has been caused by a blockage of some kind, scar tissue or cancer returning. Needless to say, I'm worried about the potential it could be the latter. Her CA 19-9 is still normal and hasn't really fluctuated (14), and her bilirubin levels have been gradually rising ever since she started chemo back in January (it was low in December after her surgery). Important to note, during a previous cycle in which they delayed her chemo, her bilirubin lowered. The rest of her liver numbers are mixed, some normal and some high, and we're waiting to find out what they're at this week - this isn't unusual for her because she has NAFLD.

I would think that the high bilirubin could be chalked up to the chemo causing liver toxicity, but it's definitely concerning regardless. I'm curious if anyone else has had a similar experience.

Greetings.

I saw my primary care provider in September 2020, when I mentioned that I was experiencing achey left sided abdominal pain. I had a soft diagnoses of IBS at the time, but my provider went ahead and ordered a CT abdomen.

It was perhaps a couple days from our wedding anniversary, in October, when my PCP's nurse called. She sounded urgent and anxious: there was a mass found on my pancreas, on the body, and I needed to get an MRI.

My wife was a wreck, almost inconsolable, terrified at the implications. I tried to remain stoic. I did mostly.

The MRI was the first time I had gadolinium--whew that stuff made me nauseous! The result gave a clearer picture of what the CT showed, some type of mass.

I was referred to the experts. I first had what I think was an ERCP, and I distinctly remember the doctor telling me that the results were relatively reassuring: the preliminary indicated the more favorable neuroendocrine tumor. Still, I had to have it cut out, and the surgeon told me I had time, but ought not delay much.

The surgeons nurse gave me 4 vaccines: I was told that they were going to take out the distal pancreas and speen, so i would need extra immunizations.

My wife stayed in a nearby hotel, booking a few days for when I had the surgery date, which was around mid November 2020.

I remember waking up in the ICU, where I stayed a couple of days. Apparently my blood pressure dropped too low during pr after surgery, and they needed caution. I eventually transferred to the regular surgical floor, where I spent another 5 days or so.

The surgery was supposed to be laproscopic, but ended up being open: that is why I had a longer stay, I guess. I was told they did a distal pancreatectomy, splenectomy, omenectomy, and lymph node dissection. The doctor said that if he were to stage it, it would be stage 2.

I also saw an oncologist, who stated that I neednt get any chemo: in my case, the surgery was sufficient, but we should still be watchful.

I'm a nerd, so I downloaded records, including path. It was confirmed to be neuroendocrine tumor, was present in three lymph nodes, but fairly well differentiated, with low mitosis. Reassuring.

About a year after the distal pancreatectomy, I was diagnosed with DM2. Per Dr Google, it's not uncommon to develop DM even with a partial pancreas resection.

Since the surgery, it's been a matter of getting periodically (seems to be yearly) scans. So far so good.

I'm grateful for the care and support I received.

I wish you all the best.

How long after the procedure began did the surgeon know they were going to stop?

Waiting for an update for a loved one currently undergoing the procedure. Were warned they may start the procedure and determine it’s too close to her veins to proceed. It’s been 3 hours with no update- do you think this means they are able to perform the procedure or would it still be too soon to tell?

My dad passed on March 19th at 62 years old after a year (+ a few day) battle with Stage IV pancreatic cancer. I am 31 years old, my younger sister 24 and my older sister 33. He leaves behind a wife of over 35 years and a single grandson, named after him. My mom and I were both up all night and early morning on the 19th. He was restless. My older sister stopped by to say hi on her way to work and he said "I love you" as she left. I held his hand, left his room, and started talking to the hospice nurse about how to administer morphine, which we planned to start that morning. No more than 2 minutes later, he was gone. I've never witnessed death like that - one moment he was awake, restless, but awake, and the next he was gone. I rushed through everything I could think of to say to him in those 7-10 minutes while his brain was still active and my mom laid there crying. It's something that will haunt me, and yet, I will cherish it for the rest of my life.

This has been the hardest year of my life. Not even two months before my dad died, my last living grandparent (my dad's dad) passed at 101. Watching my dad fight, fight and fight some more and ultimately have to give in to this terrible, horrific disease. I have completely lost myself and am living in the fog of grief so many within this community know too well. I have the support and resources, but it is still so, so heavy.

This group was incredibly helpful when my dad was diagnosed and throughout the entire year. We had no idea how to navigate this, as do so many others. I feel it is the only thing left I can give to provide what I learned for anyone who is just starting this journey.

1. Contact Pancreatic Cancer Action Network (PanCan) upon diagnosis to help you. They will facilitate genetic/genome testing, research clinical trials, etc.
2. Join support groups and build your community. If you want to share your story, start a private Facebook group with friends and family. Being held up by community is going to be critical.
3. Find a therapist and start seeing them NOW. You will want someone to know every step of this journey - the good and the bad. The highs and the lows. I am so thankful I did this the month my dad was diagnosed.
4. If able, seek numerous opinions from doctors in different hospitals. The beginning is SO scary. You don't know what the action plan will be and you feel the clock ticking. My dad was Stage IV and we went to numerous doctors to see if his could be operated on with the Whipple procedure. After 3 visits, all three agreed that it was not operable.
5. Find a doctor that you LOVE and feel supported by. You MUST advocate for your health and the health of your loved one. We utilized a local oncologist for chemo and did scans at Mayo Clinic Rochester with Dr. Carr. The scans at our local hospital were AWFUL! When we sent them to Mayo Clinic, the doctors there said they could hardly read them. They would show us the scans side by side and even myself (not a medical professional) could tell.
6. Seek alternative therapies for symptom relief - acupuncture, chiropractic, nutritional therapy, etc. These will not CURE cancer. My dad had horrible neuropathy. It brings tears to my eyes to know the last 6 months of his life he could not feel anything with his hands and was basically paralyzed and could not write or eat well. He was STUBBORN and did not start these alternative therapies until it was too late. Most hospitals offer them. Start them before the symptoms begin if you can!
7. Stay active - mind & body! We unfortunately live in Michigan and have to deal with cruel winters. My dad was so much better when it was the summer & fall and he was outside working, going to the beach, and spending time with family. When winter hit, I noticed a big decline in his mental health. And that only got worse when we received news that Gem/Abraxane was no longer working and he had to go to a clinical trial.
8. If they won't eat, they won't eat. But you have to keep trying! My dad would eat for a few weeks, then he would suddenly spit out every single thing he ate. His weight would go up 30 lbs and then down 30 lbs. This is to be expected. Emphasizing they are not eating and continuing to talk about their weight all the time is not helpful. What is - buying them new clothes that fit (ask your community for help! We did! People bought clothes for my dad). Make sure they feel their best with hair cuts, beard trims, new cologne etc. They will not recognize or feel like themselves so do anything you can to make them feel good and special. I loved seeing my dad dressed up going on a date with my mom.
9. Notify your work ASAP. You will need their support. Especially if you are supporting a loved one.
10. If able, spend time with them and record their voice. Take videos...just small videos here and there. Videos of them doing dishes, cooking, riding a bike. I have SO many videos of the last year together and while I look at them and see someone who is certainly my dad, but also a skeleton of the person I once knew, they provide a lot of comfort.
11. Anticipatory grief is a real thing! It is VERY hard to be hopeful and also feel like you are crawling towards their death. I felt guilty recording his voice and taking photos, but I knew that we were buying time. This is a KINDNESS you are doing to yourself. Do not feel that guilt. Know that it will be cherished whether you have a year with them or, hopefully, MANY years with them.
12. I found a lot of help in two books - "It's Ok You're Not Ok" by Megan Devine and every book by Pema Chodron.

I am happy to share any other information and more on our journey if you have questions and are just starting out. I want to do whatever I can to support others going through this terrible journey. I have friends with parents who were diagnosed Stage IV, had the Whipple, and 10+ years later are living a normal life. I LOVE these stories, but they are far and few between. Unfortunately, most are lucky to get a few months to a year.

My dad received both Folfurinox and then Gem/Abraxane. He also started a clinical trial, received three weeks of dosage, and then had to go home to hospice because it was too late. The clinical trial was with Mayo Clinic Rochester. Again, happy to answer any questions on that.

If you are reading this now, or 10 years down the road, and feel like you've lost all hope, that you're scared, that you're reading the statistics and find yourself crying every minute of every day, I am holding space for you in my heart. I've been there. I know the pain. Take care ❤️

Does anyone have any thoughts or information about needle seeding that can occur during an endoscopic ultrasound with fine needle biopsy? There is some evidence that if you have an FNA of a cyst in the pancreas that this can actually cause the cancer cells in the pancreas to be pulled out and spread into other parts of the body following the path of the FNA as it’s withdrawn. I spoke to my Gastro neurologist he’s going to be doing the procedure and he said they really don’t have that information, but he believes that is rare. Does anyone have any thoughts on this? Thank you so much.

Hello I am a 36F and have been going through the diagnoses process with no diagnoses. All of the following was found incidentally I had no symptoms. I have a 4CM mass in my mediastinum that prompted my pulmonologist to do a PET-CT. Well shockingly my pancreas had high uptake 12 lit up stating soft tissue lesion 2.7 cm inferior head of the pancreas and there is no evidence of pancreatic ductal dilatation. Well I freak out about that and immediately head to the Baptist Miami Cancer Institute first thing the GI Oncologist states is this isn’t pancreatic cancer and proceeds to tell me why by looking at the images he knows and says he will put me with the top GI doctor who specializes in pancreas for the biopsy EGD EUS FNB. I also get the CA19-9 blood work that comes back at a 4 and a couple other tumor markers they all come back good. Fast forward I get the biopsy done and unfortunately I got a side effect of pancreatitis which I have never had in my life. My Lipase shoots up to 680 goes down in 2 days and I’m all better worst experience of my life spent 2 days admitted in the hospital. Results come back and I was diagnosed with Chronic Gastritis and the pancreas was benign doctor also noted there is no mass anywhere on the pancreas endosonographically normal with mild diffuse hypoechoic appearance in his report he also noted he did multiple passes with the needle to the head of the pancreas. Should I trust this or get a second and third opinion here????? Any similar experiences???

Regarding my lung mass they suspect lymphoma or carcinoid tumor or also benign so I’m having robotic VATS procedure this Thursday. I did a bronchoscopy prior to this that also came back benign. I feel like a lab rat at this point with all these exams and my anxiety is through the roof. I’m praying for the best I have 2 little kids. I need advice mainly on the pancreas I know this subreddit is not about the lungs. Thank you if you read this far.