Advanced pancreatic cancer
377 topics in this forum
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New to this pancreatic journey
by Barbie- 2 followers
- 9 replies
- 1.8k views
Hello I was diagnosed with locally advanced pancreatic cancer last June 2020. I have had 6 rounds of Folfirinox, which I have tolerated well and feel extremely well at the moment. I am starting five weeks of radiotherapy and chemo by pump next week. Unfortunately the tumour is still unresectable but I am hoping the tumour will shrink more so that I can have surgery. Feeling a bit anxious about the next stage, just wondering if anyone else can give any advice/tips? Trying to keep upbeat.
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To chemo or not to chemo?
by Cardi- 2 replies
- 425 views
In brief, I was diagnosed with pancreatic cancer at the end of October aged 48. It is not operable and is being treated with palliative chemo. I have completed 6 months of GemCitabine and Cistplatin on a three week cycle, which I coped with well. Unfortunately, we then received news that the chemo was no longer being effective. The tumour was growing again, and I had two small nodules on my lungs. We negotiated a short break form any treatment with the oncologist and was able to have a lovely week away in Cornwall in June. Everyone has commented on how well I have been, and how we have stayed positive. Since then I have started on folfirinox and hit a w…
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Peritoneal mets. Please help
by Vasil- 15 replies
- 2.3k views
Hello. Can anyone please share some experience with peritoneal mets? Is it more dangerous than spread to the liver? My father had multiple nodules in the peritoneum upon diagnosis. He had 12 rounds of Folfirinox and tumour shrank a little bit but the peritoneal mets have increased. This is the lining of the abdominal cavity. I guess these mets are not very common. Please someone?
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Newly diagnosed pancreatic cancer in HK
by Mercy110- 7 replies
- 1.3k views
Hello all. It is lucky for me to find the supportive forum in such a difficult time. We are a family from Hong Kong. My dad, aged 63, is newly diagnosed CA pancreas yesterday. He has been feeling unwell for some time (stomachache). We guess he had tolerated the pain for a while as we used to take care of my mum, who was a stage 4 CA rectum patient and passed away on 14/4/2021. Before my mum’s death, he had complaint about the stomachache and we scheduled colonoscopy for him. The checking occurred after mum’s death. Nothing’s special in his colon and stomach but the ultrasound found shadows in his liver. Pet scan showed mets in his liver, lungs, lymph nodes and bone. Re…
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Radiation therapy
by Vasil- 5 replies
- 1.5k views
Hello. Has anyone had radiation therapy along with Capecitabine? Was it effective? Does it shrink the tumour? Any comments appreciated.
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TOO LATE
by Narciz- 1 follower
- 6 replies
- 1.5k views
Hi everyone. 2 weeks ago my mom was diagnosed with pancreatic cancer stage 4. Today i just spoked with one doctor who said that we cannot do anything, not even chemoterapy. In all this time i read many articles and forums. Even here i read that you can use chemoterapy at stage 4. Please help me with some advices. I will go to anothet doctor anyway. Please share your experience. Thanks in advance.
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Bile duct stent & sepsis....
by Ukkird- 2 replies
- 2.1k views
Hi all, I've been lurking around this forum reading many of your stories, marvelling at your bravery and shedding a wee tear when things don't have the best outcome. This disease is a complete *rse. I love the feeling of community that seems to exist here and know that the ability to put your story down in writing or just to have somewhere to vent that is removed from your immediate circle is immensely helpful. Just a quick overview of my dad's 'journey' with this hideous disease before I ask my question of this wonderful community. I live in New Zealand but have been in the UK to be with dad and support my family since Sept 1st. Dad (74) has suffered with…
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NanoKnife for stage IV inoperable?
by Vasil- 4 replies
- 2k views
Has anyone heard of irreversible electroporation NanoKnife applied to a metastatic PC that is also inoperable? Surgeons usually say surgery for stage IV makes no sense since it does not increase survival. And yet... Does anyone have any idea? They say this procedure is supposed to spare the surrounding tissues like arteries and veins involved.
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CA 19-9 and treatment
by Vasil- 1 reply
- 1.2k views
I apologize for keeping on posting as I am a foreigner living in a small country in Eastern Europe. But the nurses have reassured me that location and country of origin do not matter on this wonderful forum. So I have the following question. Is it necessary that levels of CA 19-9 drop to normal levels below or slightly above 37 in order to consider a favourable outcome of treatment? My father is just finishing his 12th cycle of Folfirinox treatment but his CA 19-9 is still very high, over 2000 IU. THANK YOU SO MUCH.
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Nagourney Cancer Institute
by Nicola77- 1 follower
- 5 replies
- 1.5k views
Hi all Has anyone come across the Nagourney Cancer Institute in California (https://www.nagourneycancerinstitute.com/)? The clinic uses each patient’s tumour cells to study the effects of drugs and combinations directly upon cells isolated from a biopsy specimen to identify the drugs, combinations and sequences that are most effective for each person. The biopsy can be carried out at someone's local UK hospital and the sample sent via international courier within 24-48 hours of removal. Patients are then treated by their own oncologist using the test results. It looks interesting and Robery Nagourney has published a number of papers on this 'profiling' but I'm kee…
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Chemo decision
by Nicola77- 6 replies
- 1.7k views
Hi all I am hoping someone might be able to share their experience of palliative chemo. My Mum (aged 74) has been diagnosed with inoperable PC this week, with spread to the stomach and small intestine. She is unsure of the relative advantages of palluative chemo and I a keen to know how harsh it is, how others cope, and how much it improves quality of life and longevity. Has anyone with similar diagnosis undergone Folfirinox or Gemcitabine/Abraxane? (Or another combo?) I'd really appreciate anyone who can share their or their loved one's experience of it. My Mum is 74 but relatively fit until the last couple of weeks when she has some weight and energy loss due to sic…
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Cancer is not the enemy
by Vasil- 0 replies
- 1k views
I am fully aware that this post might sound strange but it is not inappropriate in any way and since sharing one's experience is the motto of this forum I would like to briefly share my experience of cancer: Notoriously in the second half of the previous century Western medicine declared a war on cancer. This view is wrong and I will briefly try to make my point. Cancer is not extraneous to the body. It is not an external and merciless predator. Cancer is DEVIANT LIFE. It simply is an alternative developmental pathway which is normally being hidden to life's course but has been accidentally activated. This pathway is immanent to life but rarely taken since it does not …
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Sad, angry and feeling lost
by Sylvie13- 5 replies
- 1.8k views
I was diagnosed with inoperable stage 4 pancreatic cancer at the end of September. Having passed through shock, I'm now feeling angry and lost. I've opted for palliative care at home as the one chemo regime offered came with a list of side effects that read worse than the disease itself. I'm comfortable with my decision and so are my family. I'm being wonderfully cared for by our amazing NHS and our local hospice nurses - I couldn't ask for more. But I can't get through the sadness and anger and move towards some kind of acceptance. I feel like each time I try I hit a brick wall. I really need to share with others in the same place.
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- 2 replies
- 13.7k views
I am diagnosed with stage 4 Acinar Carcinom with the tumor at the tail of the pancreas w/metastasis to the liver. I am very interested in experience and perspectives on surgery of stage 4 patients, understanding that it is a complicated question where each case might be different. I am currently being treated with FOLFIRINOX, and the treatment has so fare been very effective with aprox 50% reduction after four cycles. I have been in contact with experts in Europe, USA and Asia. The opinion seems to be diverse among the experts. I have received some very positive signals that surgery is possible and most likely beneficial. But also some more skeptical stating that it stat…
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Life expectancy for Stage IV
by Vasil- 3 replies
- 2k views
Hi to all. I come from Bulgaria and I really need some support. My father aged 73 was diagnosed with inoperable metastatic PDAC three months ago with mets to peritoneum and spleen (i guess splenic mets are not very common). He's made 7 cycles of Folfirinox and still going on with this regimen. Aside from common side effects like nausea and fatigue he is progressively losing weight. I really do not know what to expect. For how much longer can an elderly man be on chemo? The oncologist has refrained from a definitive prognosis. "everyone is different", he says. Can a patient be on chemo treatment for years on end? Perhaps I should not be asking myself this question and simp…
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- 32 replies
- 72.2k views
In June 2012 my husband David was diagnosed with Pancreatic Cancer. We were absolutely devastated, to be honest we didn’t know what pancreatic cancer was but it didn’t take long looking on the internet to understand how serious this cancer is. We were absolutely devastated David was only 34 years of age with two young daughters Jessica 5 and Molly 3. Following a CT scan we were told that the tumour was ‘operable’ and an operation called the ‘Whipple Procedure’ could be performed to remove the tumour. We were elated we were operable. This is where our story takes a cruel twist. When David was diagnosed he was given an ERCP to enable a biopsy to be taken and attempt to u…
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Ascites/Advanced symptoms
by Anna2020- 2 replies
- 3.8k views
Hi everyone, Just looking for some support and advice really, to see if anyone's been through anything similar. My mum had a CT scan on 6th August this year after being admitted to hospital with jaundice. (She'd had some blood tests done with her GP who suspected gallstones. Once they received the results they then referred her straight to a&e). Once she had the CT done, she was told just a few hours later that it was very bad news and had a mass on her pancreas. He said he was almost sure it's cancerous. She then had an ERCP on 10th August and had a 7cm stent fitted. They also tried to take some brushings for a biopsy which was unsuccessful. We then m…
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My Mum
by LST- 23 replies
- 48.3k views
Hi everyone. I’m hoping I can get a bit help and support. My mum was diagnosed on 7 jan 2018 with stage IV PC with very small mets to her liver. Tumour is the the main body of the pancreas. She has been keeping well, no weight loss, eating well, and only a little pain which she’s been controlling with one paracetamol 3 times a day. 2 weekends ago we ended up at the hospital with a blood clot in her leg and small ones in her lungs. She’s now on injections to stop any more from forming ... hopefully. Mum has seen oncologist and is to have a liver biopsy on 18 Feb with chemo planned to start by end feb. I can’t remember which one but it’s a mixture of 2 with 3 we…
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Our story so far
by dw010- 10 replies
- 21.2k views
Hi, this is my first post here. My Mum (diagnosed Mar 29 age 69)had her 4th cycle review of her gem/abrax treatment, good news is her liver mets and lung nodules are completely gone. Her main tumour has shrunk 64% and the professor said all signs /scans point to it being dormant, in that what remains is not active. Bad news is she developed pneumitis a rare reaction to gem/abrax which means she can't have it anymore. The Professor recommended a chemo break but will be monitoring her with bloods/scans every 2-4 weeks. Folfox will be her 2nd line treatment once needed. He also testing genetics as suspects she may be brca due to family history and good results fr…
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My mum
by simonstones- 1 reply
- 12.4k views
Hi everyone Just looking for some thoughts/experiences from others who have gone through similar situations. Some background... My mum is 68, and was diagnosed with locally advanced pancreatic cancer in the tail of the pancreas on 2nd July 2018. Some of you may recall my fight to get her surgery last year, after she was dismissed as being 'too complex' with all of her existing health conditions (lupus, type 2 diabetes, liver cirrhosis caused by non-alcoholic fatty liver disease, history of recurrent blood clots and polymyositis to name but a few!). Cutting a very long story short, some 168 days after diagnosis, she underwent a distal pancreatectomy to remove the tu…
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Tumour markers
by Theresa Upton- 3 replies
- 10k views
Just having round 11 of floririnox, the last few have been at 80% and my tumour markers have consistently reduced. Today I have learnt that they have risen from 37 to 43, should I start to worry. I have a scan on Saturday but the results won't be ready for 2 weeks. I am well in myself, good appetite, no weight loss and reasonable energy levels. Any thoughts. X
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Getting confused with all the information
by Theresa Upton- 4 replies
- 11.5k views
Hi, I continue to read so much information relating to pancreatic cancer and I am becoming confused. I was diagnosed in September 2018 with pancreatic cancer with liver metastases, the main tumour which is 62mm x 38mm is in the body of my pancreas and is encasing the splenic vessels and the common hepatic artery. The lymph nodes are also affected. At the point of diagnosis my only symptom was tiredness so I was offered folfirinox and I am due to have round 4 this week, I have also been told that my life expectancy can be measured in terms of months not years and it is a prediction that I do want to accept. I have read stories about people with similar diagnosis that have …
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RIP Erika xxx
by Fernack45- 7 replies
- 12.9k views
So very sorry to hear this sad news. She was a warrior and we should all continue to fight in her memory xxxx
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Newly diagnosed ... first post
by Finchy- 1 reply
- 10.3k views
On 15 Nov 2018 I visited the doctor to get the results of an ultrasound. He said I had a slight dilation of the pancreatic duct but I didn't have a mass. As I was expecting him to say I had gallstones, this came as a shock. When I left the doctor I Googled it and discovered that I was at a very high risk of cancer. One search led to another and I found this website and signed up. The irony? That very day was Pancreatic Cancer UK day. I went for more tests and was diagnosed as having inoperable pancreatic cancer three weeks ago. I'm 56 years old. I don't have grandchildren yet. I'm nowhere near ready to say goodbye to my husband of 32 years. I hate the thought of l…
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Unusual presentation
by NatalieE- 2 replies
- 10k views
Hi all, I just wanted to post my dad’s story so far to see if anyone has had any similar experiences. On the 7th Jan my dad was diagnosed with advanced pancreatic cancer with mets to the peritoneum. He was told that he’s a good candidate for palliative chemo in that he seems quite well and the doctor said he was between 0 & 1 on the ECOG performance scale. He went to see an oncologist last week who is baffled by my dad. He said that he seems remarkably well for somebody with this kind of diagnosis and that his cancer markers are very low with someone with advanced PC. apparently they are 25 and he’d expect them in the thousands. The oncologist is no…
