/r/pancreaticcancer

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Peer-to-peer support for pancreatic cancer patients and their caregivers

News and Stories relating to pancreatic cancer, its prevention, diagnosis, and treatment, and those who suffer or have fallen to it.

/r/pancreaticcancer

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1

Hair dyes and tattoos whilst on chemo? Yes or no?

A bit of a weird question or two for those who have undergone chemo as part of their treatment, in particular Folfirinox and Gemcitabine. I made it through 4 cycles of Folfirinox before the decision was made to switch to Gemcitabine, due to the severe side effects Ii was experiencing with Folfirinox.

I've been reading on here that a lot of people experience hair loss shortly after starting Gemcitabine. It probably sounds extremely vain, but even knowing that I'm dealing with a terminal disease that will likely see me out of here before I'm 50 (I'm 48 as of last December), the thing I'm scared of the most at the moment is losing my hair, especially my beard. I've dyed my hair almost every colour of the rainbow over the years, and if it's gonna fall out I wanna go nuts one last time and dye it something outrageous. Has anyone done this, and do you have any tips at all? I've read that it's not a good idea but was hoping to hear from those of you who have done it (successfully or otherwise).

My other question, both my partner and my brother have asked about us getting tattoos. Are there any precautions I should know about, are the risks of things going south higher because of the chemo (more chance of infection? Ink not taking? Other things i haven't thought about?).

Would love to hear from anyone who's had first hand experience with either of these, good or bad. Thanks so much 😊

0 Comments
2025/02/01
13:33 UTC

1

Discuss the therapy with doctors

Hi All, My mother 72 was just diagnosed with T2N0 borderline resectable ductal adenocarcinoma in the head of pancreas. On next days we will meet the oncologist where he will illustrate the neoadjuvant therapy that she will have to start. I don’t know yet what will be proposed, but I have read tons of articles and deep searched through ChatGPT as well. I had multiple confirmations that Nalirifox has been successfully tested as a neoadjuvant therapy as well, but for the moment here in Italy it has been only approved as a second line tratment for metastatic pdac. The trial was conducted in Italy as well, but in another center, we are followed as well in a medical center that is involved in advanced research (e.g. they are studying a dna vaccine 2.0 for this disease). Going to the point, can I ask to take in consideration Nalirifox and do I have any chance to get that therapy for my mother is it fits for her? How can I convince or advocate for this treatment?

Thanks, hugs to you all guys

0 Comments
2025/02/01
13:13 UTC

3

Liver abscess, anyone with experience?

My mom was diagnosed with stage IV in early december, so far she's had two doses of Folfirinox. We went to the ER due to her getting even worse pain attacks than usual and a CT revealed she now has abscesses in her liver. She is in hospital and gets tons of antibiotics. On top of that, she now has GI bleeding too though it seems to be getting better.

Did this happen to anyone else? How did it go? How is this even treated beyond antibiotics? She hates being in the hospital.

0 Comments
2025/02/01
09:17 UTC

6

Stage 4 PC Adenocarcinoma with Squamous Differentiation is not a birthday gift anyone wants!

Well, after being a lurker and reading everyone's stories for a few weeks, I will share mine even though We are still in shock and beyond heartbroken like everyone else who migrates to this page. It's surreal!

My husband (53 years old) was officially diagnosed with Pancreatic Cancer last week...Stage 4 Pancreatic Cancer Adenocarcinoma with Squamous Differentiation. It took a painstaking amount of time to get the official diagnosis despite all the scans and blood tests that confirmed our suspicions. The CT scan, which was done mid-December, showed a tumor on his pancreas tail, and his spleen and lesioned liver were enlarged. His CA 19-9 blood test was over 100,000, and quite a few other blood tests were flagged as being high. His PET scan shows the pancreatic tumor is over 5 cm and that it has metastasized to his bones, some lymph nodes, and liver, along with some malignant ascites. 11cm of his liver is already necrotic.

The clock is ticking loudly with all the seemingly long waits between doctor visits, procedures, and scans. I'm surprised at the long waits, especially when time is crucial for this type of cancer. He will try Folfirinox to see if that alleviates some of his symptoms and hopefully give him a little extra time... the quality of life is the most important for him, so if he can't get to that point, he will choose death by dignity...This cancer is a living nightmare.

I'm just curious if anyone has paired up with a volunteer in a similar situation at Pancan or joined any Pancan support groups. What was their experience with Pancan?

2 Comments
2025/02/01
06:53 UTC

13

Gone too soon

My mother (56) finally lost her short battle earlier this month. She was recently diagnosed in November with stage four pancreatic cancer with metastasis to the liver, discovered from an ultrasound, that was finally ordered from her PCP after developing jaundice. She had prior history of diabetes, hypertension, and high cholesterol.

As she got discharged from the hospital and I worked on getting her into chemo (took from hospital discharge of 11/13 and first chemo was scheduled for 12/31). I’m not sure if the oncologist knew already that chances were very grim hence the delay in chemo but a week before she could start her rounds of folfirinox.. she had a massive stroke that left her nonverbal, cognitively impaired, and physical weakness to her entire right side. After numerous doctors, it was concluded she had internal bleeding that might or might not have caused her stroke, although there were blood clots in her brain..it was all a medical mystery as she was taking Eliquis for blood thinning for about 3 weeks at that point.

She ended up having another stroke early January and passed before we could sign the hospice consent form to take her home so she can pass peacefully there. I take comfort in knowing that she is no longer in pain but it’s so upsetting how cruel this disease could be. Hug your loved ones ❤️

2 Comments
2025/02/01
03:46 UTC

10

URGENT - Please help! Creon & Insurance

My mom is newly diagnosed so she hasn’t started treatment yet but is about to in a few weeks. My mom was prescribed Creon. I went to go pick it up and they said it was not approved by insurance and that it’s $2000?!? I put in an appeal and they said it could take a week or two to get a response. My mom is supposed to start chemo in a few weeks. She literally doesn’t eat anything because it hurts after she eats. They said this would help and also help absorption so she can gain some weight. Would it be crazy if I paid the $2000? If she starts chemo in a few weeks I can’t wait weeks for the Creon right? I want her to put on some weight and actually be eating before starting chemo. It hurts to see her be so uncomfortable. Let me know guys! Thank you in advance!!

11 Comments
2025/02/01
02:57 UTC

4

Any experiences with Northwest Community Hospital?

Hello, my mother (65) was recently diagnosed and referred immediately to dr. Malcom Bilimoria for a Whipple procedure, without previously consulting an oncologist. They reassured us that the tumor is very isolated and operable so they did not even recommend consulting an oncologist. Diagnosis based on contrast MRI, endoscopic stent placement and biopsy and several CT scans and several rounds of bloodwork over her 3 day hospital stay. They were great at diagnosing but foregoing an oncologist doesn’t sound great to me. Any experience with the hospital and Dr. Bilimoria alongside any advice at all is greatly appreciated. Thank you.

Edit: forgot to mention adenocarcinoma was confirmed via endoscopic biopsy

9 Comments
2025/02/01
01:54 UTC

3

Ascites. Gained 20 pounds

My mom has gained 20 pounds at this point all from fluid buildup maybe even more because we are pretty sure she is losing weight from not eating enough, but the scale keeps going up due to the fluid retention. She had just started Gemcitabine as nalirifox did not work for her. Her doctors just keep telling her to take the diuretic prescribed and to keep her feet elevated, but her legs are about double the size and bulging out in some places she can barely wear shoes because everything is so swollen from her stomach down to her feet. At this point, she refuses to do any type of drainage procedure. Doctors believe cancer has spread to her stomach (Peritoneal metastases) since her last scan a few weeks ago. She’s starting to look pregnant at this point.

I know this is pretty common. Did diuretics help anyone? Her doctors are well aware of how severe the ascites is, and even though she’s had trouble breathing they are not acting like this is a big deal.

Does anyone have any advice on what I can do for her? I don’t know when the right time is to bring up palliative care.

11 Comments
2025/02/01
01:49 UTC

2

Final Stages

My mom has been given terminal diagnosis. Is extreme bloating normal at the end? My Mom is in so much pain, nerve block did not help.

1 Comment
2025/02/01
01:48 UTC

5

Looking for some guidance

Hello to all of you brave warriors, family and caregivers. My Mom was diagnosed with Stage 4 pancreatic cancer, 2 weeks ago during a CT for what we thought was a diverticulitis flair. She is 80 and was very active and always on the go. It has spread to 2 abdominal lymph nodes, her liver and her left lung.

We met with heptabiliary surgeon and they said she is to bad advanced for any surgeries and probably radiation as well. We meet her oncologist, next week.

She is already very sleepy and in a lot of pain. She can barely eat anything a few bites here and there. What do I need to look for to see if she is developing 3c diabetes or anything like that? I am not sure if she is even a candidate for chemo until next week.

My heart and gut tell me that she will go pretty quickly and I appreciate straight talk. Thank you

6 Comments
2025/01/31
21:37 UTC

3

Scarring of the lungs

OK, Dan had a CT this past Monday and it said that he had scarring of the lungs that the right lung had more scarring than the left lung… It also said that his liver lesions has increased and multiplied!… Can anybody tell me what the scoring of the lungs mean?

1 Comment
2025/01/31
19:49 UTC

4

Rapid growth of tumor, how bad is this?

I’m guessing my mom’s tumor moving from 3.9cm x 3.0cm to 5.2cm x 3.3cm in 12 days is very bad? Similar size growth on the liver Mets.

2 Comments
2025/01/31
19:30 UTC

10

Back in the hospital

It was Sunday when I brought my mom into my home.. not even a week later and we’re back. She spiked a fever yesterday, we got it under control, but spiked again today.

I’m exhausted because she had had a bad evening and sent home the at home care assistant.

Mom gave me the fun surprise of 3.5 extremely stinky diapers filled with foul liquid. The .5 was the one time a few wipes were enough.

Fuck Cancer! We had to make it to Tuesday to start on Chemo, that was Moms desire.

2 Comments
2025/01/31
18:53 UTC

11

Father Diagnosed in June, Hospice is saying he's taking too long to die...?

He was stage 4 when he was diagnosed, refused chemo, tumors popped up on his liver now too, and after surgery for his 2nd stent they've had him on home Hospice since end of October.

The hospital released him on hospice, and hospice said he's not really hospice because he could, at the time, still use the bathroom on his own and walk around. They still let him have hospice and were covering his pain meds but now I guess it's been too long and they won't cover his pain meds.

My father has now withered to bones basically I can see his hip and leg bones. Stays in bed, wears a diaper, but still sits himself up to take his meds and insult us when he's mad. (Which would usually make me mad, but now is very endearing cause it's the only time I feel like he's himself and active)

Idk hospice is kind of leaving us in the lurch because he's taking too long to pass. But we are just trying to make best of this horrible situation and don't know what to do or how to handle this limbo of nursing home vs. hospice. Culturally we would take care of our seniors till they pass among us siblings and the family, using nursing homes and having in home help is new to us, but necessary since I'm the only sibling willing to help, but don't drive and am a SAHM to two kids under 5 and live 40mins away. There's no realistic way to help my Mom who is trying to care for him in between nurse visits having survived her own mini stroke.

Are there reliable websites to check if a nursing home or specific hospice company is good? I feel like the one that helps us can be so unprofessional unless I break out in emails.

My Mom is torn apart but has decided he should be at a nursing home at this point because she can't care for him any longer. She just wants to know he'll be someplace that will pay attention to him properly enough that she could be told and alerted to when he will take his last breath. I don't think me or her could live with ourselves if he died alone or surrounded by strangers. The way my Father is, I know he'd hate it to.

10 Comments
2025/01/31
17:54 UTC

6

Beginning of the end?

Mum went on a chemo break at beginning of December. She was suppose to start chemo again on January 15th but was taken to ER On the 10th due to fevers. She was put on Iv antibiotics then discharged to take more antibiotics at home. Few days later she still had fevers so we took her to ER again.

Turned out her bile duct was being blocked because her tumour pressing against it so a permanent stent was placed. Jaundice markers alleviated however her temperature remained high. They couldn’t fully diagnose the problem at the time because all infection/bacteria tests showed were all negative. They concluded that her tumour/metastasis is likely big enough that it is putting pressure against the outer bile duct tube which is causing inflammation so there’s not much else they can do aside tailoring her antibiotics then be discharged. So because of this, her markers remain high. And from my understanding , if these markers such as wbc, neutrophils and crp continue this way it’s too risky to continue chemo treatment. And as soon as she was supposed to be discharged, she started to have bloody stools so they kept her for further investigation. Things are happening so quick.

She is so weak right now, not eating as much let alone having to stomach up hospital food. It’s been around 2 months since she’s had any treatment. She will have onco meeting if and when she gets discharged and we are already expecting the absolute worst news.

2 Comments
2025/01/31
13:36 UTC

7

Experiences with cancelling / pausing adjuvant Folfirinox?

My mum (68) has now had 3 rounds of adjuvant folfirinox. The side effects were unusually long in the first two rounds (sometimes over a week - up to 10 days) - mainly nausea, phlegm, diarrhoea... She lost so much weight. A brief background: she had an extended Whipple operation at the end of September - the entire stomach had to be removed, part of the pancreas, part of the large intestine... she had already lost so much weight before the Chemo. now she is under 50kg. They then diagnosed an intolerance to one drug - the irinotecan - and reduced the dose to 75% on the third round. The first three days she was amazingly well - much better than the first two rounds. But then it started again - the nausea with bilious mucus came back (could be well controlled with acupuncture in round two) and also nausea and shortness of breath.

A doctor friend of mine also said that I should consider taking a break - because the body can't do both at the same time: Build up and fight/defend off the chemo. A few days ago my mum said she would like to do 1-2 more cycles and then take a break. But now that she's just not feeling any better, she's at the end of her tether and will speak to the oncologist next week to see if she can take a break now to rebuild/re-energise.

Does anyone here have experience with pausing or even discontinuing adjuvant folfirinox? Are there also positive examples/experiences with stopping after a few rounds where no/not so fast a recurrence has come? Does anyone have experience with the intolerance of the substance irinotecan?

It is so hard because there is no guarantee either way, I am very afraid that he will come back quickly, but I also have the feeling that she needs to regain her strength, she is just skin and bones :(

0 Comments
2025/01/31
09:33 UTC

8

I’m lost

Hi everyone,

I recently joined, but my dad has been on this journey for about a year. I think I just need to tell his story to folks who will understand.

My dad (80) was diagnosed with stage 2 pancan at the end of January 2024. It was an extreme shock, as he had been very closely monitoring his pancreas for years. He had consistent CTs, in which the focus was the tail, with different specialists keeping a close eye on these benign growths that weren’t doing much. He had a CT in October of 2023, but nothing was abnormal, just those 2 growths in the tail that were not concerning.

In January 2024, because he was feeling odd and noticing troubling symptoms in the bathroom for about 2 weeks, he went to the ER, where they discovered this tumor. They set him up with a stint, got him on antibiotics, and he bounced back. He went to an oncologist as soon as possible, and he started chemo treatment March 2024.

He was handling the chemo so well, and after a month of treatment, they did another scan and the tumor seemed to have shrunk. We were all pumped. The team of doctors on his case recommended he get as much chemo as possible before they would do a Whipple. Scans kept showing the tumor was shrinking and eventually the surgeon suggested it was time to operate.

They attempted the Whipple in mid September 2024. They had to stop halfway through because the doctor noticed that there was a very tiny area of cancer that had spread to a main “artery highway” as the surgeon put it. He also told us that the tumor was MUCH LARGER than the scan had indicated, which really upset my mom. She was so infuriated and didn’t understand why they would even do the scan if it doesn’t accurately show the size. So, they had to close him up and suggested radiation would be the next best step. We got worried, of course. Everything else seemed totally fine and going well, so we’re not sure where this went so wrong… other than this cancer is just absolute hell.

My dad bounced back pretty quickly from surgery and was still doing very well. Once he healed from the surgery, they got him set up with radiation. He underwent 25 sessions of radiation. He finished that in early December 2024. He would sometimes be very tired from the radiation, but overall he seemed in good shape. They let us know that he’d need to wait on a CT scan to see how well the radiation worked, which he had done last week.

After he had his scan last Thursday, he seemed to be very sluggish, not eating as much, and sleeping a lot more. My mom was very worried. I told them to call the doctor and that perhaps he should take antibiotics because the stint can sometimes still get “clogged” and it would make him feel this way. They did tell him he would need to routinely have it “cleared.” To prevent this from happening. My parents are stubborn and don’t act their age at all lol. I love that about them, to an extent. So they didn’t want to call the doctor, and since they were coming in today to get the results of the CT, my dad thought to just wait.

He could barely walk straight today. I noticed he was jaundice as soon as I picked them up to take them in, and the doctor knew right away that this was the stint acting up. But this also coincided with the news that the radiation in fact did absolutely nothing… or at least it seemed to do nothing. The tumor has gotten bigger, and the cancer has now metastasized and is not only in his liver, but also spread to some lymph nodes in his lungs.

My dad has lived through some really tough cancers. He beat testicular cancer when I was just a child—he was in his 50s. He also beat lung when I was a teenager (in his 60s). None of those involved chemo and he had been completely cancer free until last year.

The oncologist did say that, once he takes care of his stint and does a round of antibiotics, she would like to get him started on a different chemo treatment to get this under control. I couldn’t really process what she had told us about it spreading, but I took comfort in the fact that she had once said to us that if she didn’t think it was worth continuing, she would not recommend more treatment. My dad is a fighter. He wants to fight, and I love that, but I’m just so scared. I have 2 much older brothers (I was a miracle baby) and they are also scared and live in different states. We’re all very close, and a very loving family. I feel very lucky to have my parents still around in my 30s, especially because they did have me late in life. My wife and I also regularly hang out with them, and we all just can’t imagine losing my dad.

He’s currently in the ER so that they could get him on IV antibiotics right away and get his stint cleared out tomorrow. I know he’ll bounce back from this. He’s a tough guy. We’re just very anxious for him to be able to get chemo again.

I feel like I’m losing my mind a little bit, but I’m really trying hard not to. I let myself cry, I regularly go to therapy, and my wife is my rock, so I know I’ll be okay. I’m just so lost right now.

My parents feel very young at heart, and I know they both do have plans in place when they can’t be on this psychical plane anymore, but the problem is that they have never wanted to talk about this with me or my brothers. We all have no idea what those plans are, and that truly makes me even more anxious. I don’t want to have this conversation, but I do know it’s important. I feel like this conversation needs to happen sooner rather than later. My parents seem to think that I’ll just know what to do… I have no idea how I’ll even be able to function as a human being. I lost my best friend to suicide 3 years ago and I could barely function… and they saw me trying to cope with that.

I would love to hear if anyone has any similarities with my dad’s case. Thank you for reading. I’m so sorry for everyone who goes through this awful, awful cancer. Fuck cancer.

2 Comments
2025/01/31
08:27 UTC

5

Surgery, 70+ years old

Hey there. Anyone know someone over 70 who had a successful surgery to remove their pancreatic cancer tumor? Weighing and measuring benefits for my mom. Doctors have different POVs. Thanks for your help.

34 Comments
2025/01/31
03:54 UTC

19

How did you or your loved one’s PC get discovered?

I am so sad to read so many stories where loved ones passed so quickly after diagnosis.

Was your loved one’s diagnosis made after experiencing symptoms? My mother-in-law was diagnosed with stage 4 pancreatic cancer shortly after Christmas. I am holding onto the slightest bit of hope that though she is stage 4, the fact that it was discovered inadvertently during a lung scan and not because she was experiencing symptoms, will afford her (and us) just a little more time.

She did have red flags two years ago that regrettably were not explored further- sudden onset of diabetes and dramatic weight loss, so I suppose not entirely symptom-free.

Her oncologist said without treatment he would predict 4 months and is hoping to prolong that to 9 months with the chemo she selected. I just want to feel like she will see summer again because she loves it so much.

This is just so cruel- 6 months before retirement. A story I know everyone knows too well.

50 Comments
2025/01/31
03:45 UTC

3

Diet / CA9-19

Hi all,

Thank you in advance for this wonderful page. I’ve learned so much in just a few weeks.

Soon after the new year, our Dad (62M) was diagnosed with stage 4. They noticed some metastasis to the liver but liver results are still healthy at the moment. He’s always been a very healthy individual besides indigestion issues (learning now that those issues worsening in the last year were likely due to this developing. He had gallbladder removed years ago), so this came as quite a shock. It goes 0-100.…he was completely fine at Christmas, now requires oxy/morphine every day since the diagnosis.

My first question, does anyone have advice on how to maintain fluid/food intake with the pain? His voice is so hoarse sometimes from dehydration due to the pain meds and inability to consume large quantities of liquids because of the pain. He’s already looking skinnier for the same reasons but with food. Could just be good ol’ stubborn Dad, too. It’s still such a shock to us all, I’m not sure if his motivation to fight is there just yet. We aren’t sure how to improve other than simple encouragement. I suggested timing it with the pain meds, so maybe gulping down more than usual once next dosage hits.

And secondly, his CA9-19 levels were 7,000 at initial diagnosis. This number then jumped to 32,000 just before he started chemo treatment. He had his first treatment this Tuesday, and that was the best he’s felt since initial diagnosis!! Understanding that this could temporarily be due to the steroids supplemented with treatment. But I’m curious if anyone knows of CA19-9 levels rising before treatment and then going back down once he’s had 1-2+ treatments.

Thank you in advance for any advice. Any general advice on how to help him handle this rapid shift in pain and lifestyle is much appreciated as well. This is such an awful thing as we learn more, but there are plenty of success stories out there. I’m confident he can exceed the 1 year timeline given to him.

6 Comments
2025/01/31
03:31 UTC

4

Whipple and weight loss

First time poster. My wife went to hospital on Dec 11 2024 after experiencing jaundice. She had a stent put in about a week later. On Jan 9 she had the whipple. Her normal weight is 58 kg (128 pounds). Prior to going into the hospital for the whipple she was 53 Kg (117 pounds). I guess she had lost some weight due to stress and fasting prior to diagnostic procedures. The whipple showed stage 3 cancer. Tumour was about 3 cm. When she got back from hospital on the 20 Jan she was 48.6 kg (107 pounds), She has regular diarrhea and occasional solid stools. She is on a low fat diet on doctor's instructions due to a chyle leak. We have been asked to stay on this diet until the surgical appointment on Feb 25. She is vomiting about once every other day. She is on metoclopramide (anti-nasuea medication). She is taking about 6 small low fat meals a day. We recently are doing 2-3 walks outside each of about 200m. Today (31 Jan) she is 46.7 kg (103 pounds). So, she has lost about 11 Kg or about 25 pounds or almost 20% of her body weight, which is a lot. I am wondering if this is normal/to be expected and if we might see a turn-around soon? It's now about 3 weeks since the operation. Can anyone else share their experience? Is this something we should go back to the doctor about 9we are seeing her GP on 2 Feb).

6 Comments
2025/01/30
23:03 UTC

60

The decline is so fast.

I recently posted looking for a timeline of what to expect, and I’m absolutely saddened at how quickly everything is happening. My mom moved to a new hospice, which is great. But I thought they had adjusted her medications and that that is why she was so sleepy and incoherent. However, when I spoke to the doctors today, literally nothing has changed and it is just her decline. On Saturday my mom left the hospital on a pass and was at home, alert, and even did her dishes. Today is Thursday and she has slept all day, not awoke, looks gaunt, and I am just devastated. I hate this disease. I hate out medical system and it’s just not fair. Yesterday I got here and all she was saying was “I’m really going to die.” And it’s just all too much. Why is there not more research going into such a deadly cancer. My mom is young. She will never see her grandchildren, she will never see me married and life just sucks and isn’t fair.

19 Comments
2025/01/30
23:00 UTC

9

What next....

Mother (72) was diagnosed in Sept with Stage IV metastatic Pancan. Tumor on pancreas, enlarged lymph nodes throughout abdominal area and involvement of L5 spine. Completed 2 cycles of FOLFIRINOX. Worked well and got her CA down to 60. However, that depleted her completely and she was given a month off of chemo to recover. Resumed chemotherapy first week of January and completed 2 cycles of Gemcitabine + Abraxane (biweekly). She was set to have her 3rd cycle today, but doctor was concerned about increasing pain she had been experiencing and wanted to wait to get labs back. CA went from 234 to 839 in 2 weeks. Her doctor postponed chemo today again and is getting pre-approval for a different chemo again. When do you start to question if the doctor is not the right fit or competent enough to treat a patient? I understand that PanCan and really cancer treatment in general is an up and down battle. We feel like there's been missteps and maybe there's better treatment options elsewhere. Not sure the best way to investigate other treatment options and going out of state seems unfeasible. She currently lives in Northern California. Any guidance or suggestions would be so helpful!

4 Comments
2025/01/30
19:08 UTC

7

Genome sequencing

Has anyone done genome sequencing for their pancreatic cancer? My Dad’s oncologist brought this up today. Would love to hear of any experiences with genome sequencing. We’re in Toronto. Thanks!!

7 Comments
2025/01/30
16:39 UTC

9

Huge CA19 9 increase

My sister has had pancreatic cancer for 5 years after being given 6 months to live. When chemo stopped working, she started Keytruda for 3 years and felt great. In October 2024, the tumor eroded into her stomach and she needed surgery to remove the cancer in the tail and repair her stomach due to internal bleeding. She recovered fine but now she has no appetite and has pain after eating. Her bloodwork this week showed a 4000 increase in her CA19 9 from early December. From 511 to 4,458. We see the oncologist tomorrow to discuss this.

Has anyone had this huge increase in such a short period of time? She needed the surgery to save her life but I’m afraid it’s caused an explosion of her cancer since we know they couldn’t remove it all.

Is this the end for her 😭😭 in anyone’s experience? Her numbers have been steady around 500 for 18 months until now.

6 Comments
2025/01/30
15:20 UTC

5

Grandma been in excruciating pain for hours meds aren’t helping

She’s been in pain since 3am it is now 10am have given her like twice and xtampza. Nothing is helping. She has stage 4 with mets to liver called drs office nurse said she would get back in a few hrs after dr responds idk if we should wait that long or js go to the ER. The hospital is also an hour away and idk how great it would be for her to sit in a car for that long

9 Comments
2025/01/30
15:17 UTC

10

Folfirinox Side Effects

My mom (48) has underwent the whipple surgery in November 29th, 2024 with an R0 resection after being diagnosed with stage 1B. No lymph nodes involvement. Today is her first day on Folfirinox (10 weeks after the surgery) and I want to know what to expect. The Doctors said that 12 sessions on 6 months were best for her case but I feel that it is too much considering how slow and painful Folfirinox is. I want to know for how long will the side effects last, and between the sessions that are every two weeks, will she be able to recover between sessions or is it like a marathon.

13 Comments
2025/01/30
13:27 UTC

11

The time they found the tumor to the time they operate it will be over 2 months..

They found a tumor on my mom pancreas in december 2024. They found it by accident in a ct scan. It was not "confirmed" until she had an mri and oncologist appointment on January 28th. And now it might be until March until she can get the pet scan so she can see the surgeon. My mom most likely has an NET, I am trying to not to panic but god WHY DOES EVERYTHING TAKE FOREVER WHEN THEY KNOW HOW DEADLY IT IS. Its not even insurance, the hospitals are just so backed up. Everything takes forever.

Edit: btw its neuroendocrine and on the tail end of her pancreas. Right now the soonest she can get the pet scan is February 22nd. There is no where else to go with high quality pet scans. Dana farber wont see her without a biopsy. What the fuck.

Edit 2: my mom is getting a biopsy on Feburary 10th! Only because we pushed for it though

27 Comments
2025/01/30
03:04 UTC

3

AlphaTauMedical.com recent Press Release on initial positive results on its DaRT therapy for deadly Pancreatic Cancers REWRITTEN with CoPilot Artificial Intelligence app

Ongoing Trials and Results

Three Trials (Canada and Israel):

  • 41 pancreatic cancer patients treated with Alpha DaRT.
  • Achieved 100% success in delivering the treatment.
  • Reported 151 side effects, with 38 possibly linked to Alpha DaRT, including 3 serious cases (2 needed brief hospital stays; all recovered).

Patient Responses:

  • 33 patients were evaluated for survival and response rates.
  • Overall: 18% showed positive response (tumor reduction); 91% had disease control (no worsening of condition).

Excluding Initial Low Dosage Patients:

  • Positive response: 19%; Disease control: 97% (only one patient's cancer worsened).

Survival Rates:

  • Median survival: 18.6 months after initial diagnosis/previous treatment, or 10.9 months after Alpha DaRT treatment.

Sub-Population Analysis

No Chemotherapy Patients (8 Patients):

  • Median survival: 7.5 months after diagnosis, with 4 patients still alive.
  • Without treatment, survival typically 3-3.5 months.

Progressed After FOLFIRINOX (10 Patients):

  • Median survival not yet reached after 15.1 months follow-up; 8 still alive.
  • Typical survival with FOLFIRINOX: 10.1-11.1 months.

Progressed After Gemcitabine-Abraxane (7 Patients):

  • Median survival: 23 months since treatment initiation, or 9 months after Alpha DaRT; 3 still alive.
  • Typical survival: 7.6-9.9 months.

Future Clinical Trials

Pancreatic Cancer Trials (U.S. & France):

  • U.S.: FDA approved a study combining Alpha DaRT with first-line chemotherapy for newly diagnosed metastatic pancreatic cancer (12 patients).
  • France: Approved study combining Alpha DaRT with capecitabine for locally advanced pancreatic cancer (40 patients) who responded or had stable disease after FOLFIRINOX.

Pembrolizumab Combination Trial (HNSCC):

Interim Data:

  • 8 patients treated with Alpha DaRT and pembrolizumab.
  • Results: 3 complete responses, 3 partial responses, 2 died before evaluation.

Comparison with KEYNOTE-048 Study:

  • Systemic complete response: 37.5% (compared to 5% in similar study).
  • Systemic overall response rate: 75% (compared to 19% in similar study).
2 Comments
2025/01/30
02:55 UTC

7

Stage 3 adenocarcinoma and ATM gene?

Hello! Wondering if anyone has done chemo with adenocarcinoma while having the ATM gene? Or done other therapies? Did it work/not work? Thank you!

2 Comments
2025/01/30
00:51 UTC

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