Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
396 topics in this forum
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Dads journey and advice
by elliej88- 1 reply
- 653 views
Hello all, I am new on here but have been reading all the stories and information to try and get some advice. My dad's situation is rather unusual (Id not known it was possible) as he has two primary cancers, I will try to be as succinct as possible in my explanation of how we got here (Terminal advanced pancreatic cancer with mestastes to kidney and stage 2/3 oral cancer) In March this year (2023) my dad was a healthy 68 (he then turned 69 in april) year old man who worked as a heating engineer carrying heavy tools around. He began to develop a tooth issue and found he had an impacted wisdom tooth and this was removed in a small surgery. Unbeknown…
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- 2 replies
- 1.2k views
Hi, I’m interested in hearing from anyone who has experience of the journey of advanced pancreatic cancer months on from diagnosis. My beloved hubby was diagnosed in December and told he had less than 6 months without treatment but if chemo worked that could be improved to 12-18 months possible even 24 months. He has had 6 rounds of FOLFOX between Jan and March and a further scan end of March. In this time we have worked hard to manage symptoms and he feels well, all pain is managed with zamorph, bowel movements are back to normal, he eats 4 meals a day with tons of creons, has put back on any weight lost and is now stable at his normal weight with few if any side effects…
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What next?
by Maddiel- 3 replies
- 1.4k views
My husband (59) was diagnosed with cancer in the neck of pancreas, stage 3 in July 2022. He had a few rounds of Folfirinox and reacted very badly, ending up in hospital for 3 weeks. He then did Gem/Abtaxane until Christmas but it did not shrink tumour and he had 11 mm Mets to liver on last CT at end of Jan, so stage 4. He is currently halfway through six sessions of Folfox, however, his CA19 - 9 is pretty much doubling every two weeks since Jan and is now 8000 +. He is also pretty miserable with few goods days while on chemo. So I am assuming the cancer is spreading probably in liver given the Mets. Would anyone have any ideas as to what is the next …
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What next?
by Maddiel- 1 follower
- 0 replies
- 807 views
My husband (59) was diagnosed with cancer in the neck of pancreas, stage 3 in July 2022. He had a few rounds of Folfirinox and reacted very badly, ending up in hospital for 3 weeks. He then did Gem/Abtaxane until Christmas but it did not shrink tumour and he had 11 mm Mets to liver on last CT at end of Jan, so stage 4. He is currently halfway through six sessions of Folfox, however, his CA19 - 9 is pretty much doubling every two weeks since Jan and is now 8000 +. He is also pretty miserable with few goods days while on chemo. So I am assuming the cancer is spreading probably in liver given the Mets. Would anyone have any ideas as to what is the next …
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Timelines and uncertainty
by Essem- 1 follower
- 6 replies
- 3.2k views
My 93 year old mum has been “unofficially” diagnosed with advanced metastatic pancreatic cancer. I came from Canada at the end of September to discover that she had been suffering from bowel issues since August, seen the GP and had a phone consult with a colorectal consultant who had offered a colonoscopy which she had refused. She felt very sick one evening and I got her in to see a gp in a few days (Oct 14) who fast tracked referral and put her on daily Cosmocol. We saw a colorectal consultant on Oct 26 who felt it could be a case of fecal impaction and arranged a ct scan within 3 days on a Saturday with no radiologist present to give us results. Two weeks later we rece…
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Elastase down from 44 to 7 in 4 weeks.
by Angieannie- 1 follower
- 1 reply
- 1.4k views
Hi, just got received elastase result which was 7 and am now panicking. This suggests that I possibly blockage somewhere. I also have pressure on my right hand side below my ribs. No other diagnosis as yet other than pancreatic insufficiency. Consultant has given me Creon. In 2018 I had major bowel surgery for cancer and was given a bag for life so I now have a permanent stoma.
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Answers I'm never going to get.
by Sunshine123- 2 replies
- 2.5k views
Hi I don't know where to start really. My husband to be was fit and healthy, we enjoyed walking doing the garden etc. In July he had his regular Mot check at the doctor which came back with his liver function coming back as slightly high. The doctors re did a blood test which again showed the same result. With this time scale into August he was getting a strange taste in his mouth where everything he ate tasting like it was dripping in sugar the weight started to fall off him. The doctor sent him for a ct scan in the middle of September as he could feel his liver was enlarged. While waiting for this result he was taken into hospital with very low blood pressure and heart…
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End of Life?
by GB28- 2 replies
- 2.3k views
Hi everyone. I’ve been on this forum a while trying to read up on anything and everything about pancreatic cancer to help with my grandmothers diagnosis, but I am now looking for some advice. Here is her story (sorry if its rambling) She is 77 and was diagnosed with stage 4 metastatic PC with mets in the lungs and liver, on 1st January this year. This was after weight loss and poor stomach for a few months prior. She continued to have a bad stomach despite creon tablets and continued to lose weight but was relatively well despite being given 6 months to live. By April she had developed Jaundice and was rushed to hospital with suspected sepsis …
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Sharing our experience so far 1 2 3 4
by Floofmom- 1 follower
- 79 replies
- 16.3k 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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- 3 replies
- 1.9k views
My Dad was diagnosed with Pantriatic cancer 9 weeks ago and told it had spread to his liver. In the last 2 weeks he started to get confused. Over the last few days he has completely lost his memory. He doesn't recognise any one at all it's absolutely heart breaking. He is talking very little but when he does talk nothing makes sense. He's lost the ability to feed his self and is now in hospital. He's sleeping constantly. The hospital are treating him for an infection although they can't find the infection. They will do a brain scan in the next couple of days if he does not respond to the antibiotics. I just wanted to ask if this memory loss is common and if it…
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- 5 replies
- 2.2k views
Hi, sorry if this is a bit rambling, this is just a very unfamiliar situation for us as a family, and we have had very little guidance from the hospital. My 77 year old mum was diagnosed with stage 4 pancreatic cancer with liver metastasis on 17th August (and, due to a miscommunication at the hospital, again on the 26th). Since these two very preliminary meetings, one with a GP, one with a gastroenterologist, we have not yet met the oncologist. She was meant to tomorrow, but it had to be pushed back a week to accommodate the biopsy (which was meant to be last Friday, but is now going to be tomorrow as the hospital didn't have any beds left). Ever…
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Newly diagnosed and in shock
by EmmaF- 11 replies
- 3k 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
- 2.5k 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
- 8.4k 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
- 2.3k 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
- 5.2k 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
- 2.9k 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 reply
- 3.1k 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
- 2.2k 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
- 19.1k 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- 0 replies
- 2.3k 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
- 4.8k 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- 11 replies
- 5.7k 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
- 6.2k 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
- 4.6k 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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