Advanced pancreatic cancer
386 topics in this forum
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Sharing our experience so far 1 2 3
by Floofmom- 1 follower
- 69 replies
- 6.3k views
I want to share my experience so far with my Mum's diagnosis, simply because I found this forum so very helpful, especially reading other people's experiences. My mum was diagnosed at the beginning of December 2021. When we saw her in July she had lost a lot of weight, had the light coloured poo, blood sugar rocketing and out of control, lost her appetite etc. Unfortunately it took several phonecalls over several weeks to the GP before they said they would refer her for scans. Three weeks later when no scan appointment came through my parents phoned the hospital only to discover that the GP had never sent the referral letter. They chased it up and she finally got…
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Newly diagnosed and in shock
by EmmaF- 11 replies
- 826 views
Hi everyone, I was diagnosed this week with Stage 4 pancreatic cancer which they believe has spread to my ovaries, peritoneum and liver. I’m 38 and don’t smoke or drink so very much in shock at the moment and trying to take each day as it comes. I’m currently waiting for an endoscopy for biopsies and then will have to wait a week or so to speak to the oncologist about next steps. Not really sure why I’m posting other than I guess wanting to hear other people’s stories and hoping to find some inspiration that even though it can’t be cured maybe there will be some joy ahead. Thank you 🙏
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Rollercoaster of a Journey
by Caroll72- 1 follower
- 4 replies
- 429 views
Hello, My Hubby, 67 was diagnosed with Stage 4 PC in December '21 with mets to Liver. Given 'months' to live. He had 4 rounds of Carboplatin & Etoposide which ended in April '22. CT Scan showed the tumour had stabilised so we continued to live life to the full. In May he was admitted to hospital with pains in side, back and ribs, we thought the end had come and the hospital issued a do not resuscitate notice on him. As the days passed he started eating and getting more strength back and was sent home under pallative care. Life continued pretty normal, but every now and again he gets extreme fatigue, nausea and backpain, despite being on pain medication. These 'flare …
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I’m at a loss and need some advice and guidance 1 2 3
by May888- 1 follower
- 50 replies
- 4.3k views
My mum who is 73 and has blood pressure and is diabetic, was complaining discomfort and stomach pains beginning of January. Finally got to see a gp and they referred my mum for a ct scan mid February. Got the results of the ct scan 3 weeks later. Told that on the ct scan showed a mass growing on her pancreas and there is lesion on her liver. The gp referred an urgent referral to the hospital to investigate further. Come mid March my mum had a blood test in the morning, then had a call from the doctors the same day in the afternoon that my mum needs to go to a&e urgently. Doctors said her hemoglobin levels were dangerously low. Danger level was 70 and my mu…
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Just diagnosed Stage 4
by Mayzee- 1 follower
- 2 replies
- 558 views
I've been contacting my GP(s) regularly for at least the last year and even saw one face to face once. A year or so ago I started to lose a lot of weight, my appetite reduced, I had mild stomach pains (and for a while more painful back pain) and wanted to find out what was wrong. First telephone conversation I was told to eat more. Second I was prescribed omeprazole. Then I actually saw a GP who felt my stomach and said I had IBS. Since then I've had a lot of blood tests, but none for cancer markers, and I was diagnosed with Type 2 diabetes, given gliptins when my blood sugar continued rising. The gliptins caused a very rare autoimmune skin disease, pemphigoid, which…
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To chemo or not to chemo?
by Cardi- 8 replies
- 3.1k 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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Medicine Driver - End of Life?
by RoloDuke- 5 replies
- 1.2k views
Hello. Like so many I am on a horrible journey with my husband who was diagnosed PC IV on 15th December 2020. He was given a year, but he is still battling despite no more chemo on offer. In the last 2 weeks his health has declined significantly and he had a Medicine Driver fitted to help with the pain and sickness which we just couldn't get under control. However, I have now read that this is 'end of life' and he may not have very long. No one has said anything about 'time', but should I ask that question? Thank you so much x
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Our story so far.
by Helenm- 1 follower
- 1 reply
- 1.3k views
It's almost 12 months to the day since we had the devastating news that my Dad had pancreatic cancer. Not knowing who to turn to, I found this forum and quickly realised how beneficial it was to read people's experiences, questions and advice. (Quick recap since I've not posted in months - Cancer is in the tail of the pancreas. Biopsies confirmed it spread to liver and stomach lining. Folfirinox started February 2021, oncologist hoped for 8 cycles and up to 12 months survival.) It wasn't easy, the Folfirinox. My dad had neuropathy in his hands and face from the first cycle, which at times was unbearable. Even cutlery from the drawer affected him and being winte…
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Excessive sweating
by Lornacath- 4 replies
- 587 views
Hi, I have been checking in with this forum quite regularly over the last few months looking for advice and reassurance and have been helped enormously by it. My 77 year old mum was diagnosed back in July 21, she was initially offered the Whipple but in the end was not deemed fit enough for this procedure (that took to the end of October) she then needed further Endoscopic procedures to gather cells to determine what type of cancer, this was not successful until end February. Chemo was then proscribed to start middle of March but could not start because my mum was rushed into hospital for life saving surgery. They did not want to operate but had no choice. She is n…
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Medicinal cannabis
by Matt Sawyer- 6 replies
- 17.4k views
Hi, Does anyone have any knowledge/experience of obtaining legally available medicinal cannabis abroad (for example in The Netherlands)? And does anyone know whether it is possible to get special permission from the UK authorities to bring such medicine into this country? Any info or advice most gratefully received. Cheers, Matt
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Everything happening so quickly with Mum
by miraculouslady22- 1 follower
- 0 replies
- 782 views
Hi, my Mum is 73 and was told she has bowel cancer spread to the liver at the end of November. She was waiting for a liver biopsy to determine what chemo she would be having. Mid December she needed morphine as the pain was getting worse, pain and morphine increasing over Christmas. Finally had the biopsy on the 13th and it turned out to be advanced pancreatic cancer, with no treatment available, with weeks/months to live. She has been varying but mostly sleeping and drugged up talking nonsense. She knows she's hallucinating etc which makes her feel worse. Her mobility has declined rapidly, and I barely got her to bed last night. Also couldn't swallow tablets last night …
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Newly diagnosed pancreatic cancer in HK
by Mercy110- 9 replies
- 3.1k 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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New to this pancreatic journey
by Barbie- 2 followers
- 11 replies
- 3.9k 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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Peritoneal mets. Please help
by Vasil- 15 replies
- 4k 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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Radiation therapy
by Vasil- 5 replies
- 2.9k 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- 6 replies
- 3.4k 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
- 3.5k 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
- 3.3k 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
- 2.4k 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- 5 replies
- 2.6k 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
- 3.3k 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
- 2.2k 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
- 3k 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
- 14.8k 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
- 3.2k 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…
