Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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Our journey is finally over :(
by westlondongirl- 1 reply
- 2.6k views
Our journey is finally over. My then 86 year old Mum started feeling unwell (unknown to me or my brother at the time) in April 2020 just as the first lockdown kicked in. Although she went to our GP who booked her in for an urgent CT scan with the NHS, when we tried to arrange a date, the NHS said that they were unable to do a scan for months due to Covid. My father, then 90 decided to pay for a private CT scan, booked late on a Friday for a Monday morning appointment. This cost just over £1K. Next day following the scan at 9am our GP was on the phone to Mum to say that she had pancreatic cancer. Mum struggled for 22 months with chemo, issues wi…
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My best friend, soul mate and loveliest husband and father to our two children 11 and 8 was diagnosed shockingly on the 22nd of Oct this year ‘2020 and passed away at home the 26th oct this year. 4 days! We had 4 days! The week before he, a teacher, was teaching a class of 30 children primary school age and walking 38000 steps a day with our dog. He complained mildly of constipation and right sided pain at the beginning of October but X-rays and uss showed nothing. We carried on as normal. Sunday he was in bed with pain out of the blue, by Monday The jaundice happened over night. GP referred to hosp ?gallstones?pancreatitis. No.... pancreatic cancer with liver mets and lu…
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Not Knowing
by Ada- 4 replies
- 3.1k views
My lovely husband was diagnosed with PC tumour on tail with metastases in liver and lungs his was given Pallitive Chemo June 2021 gemcitabine and abraxane twice he became neutropenic horrendous diarrhoea he was in hospital for two weeks at a time they put down his diarrhoea to the chemo ; it wasn’t till he had a CT scan which showed tumours were shrinking it showed he had diverticulitis and small hole in his bowel on both times he was given antibiotics via midline in a diffuser which I change every day for six weeks chemo is not given till he has finished it ; Another scan has shown liver tumour has grown and new one on the lungs so another six weeks before chemo can sta…
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Not eating or Drinking
by DebsA- 5 replies
- 3.7k views
My partner of 31 years became ill with stomach pains end Oct 2021 and began to lose weight rapidly. Eventually after several trips to doctors and hospitals we got a ct scan in January 2022 and in eventually early February 2022 we got the awful news that he had Pancreatic cancer into the Liver and there was nothing they could do to help him. After a biopsy they offered him palliative chemo and said this could possibly extend his 3 months to 6 months. I told them all he was still not eating and drinking very little (he has been given creon and fortisip but this is no use if he is not eating) and the weight loss is sole destroying to witness every day. He was …
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Maintenance 5FU
by Jen- 1 reply
- 2.7k views
Hello everyone, First time posting but have been looking through the discussions over the past few months. Short story is my mother was diagnosed back in Oct 2021 with Stage 4 PC. Parents live in the US and I actually live in NZ but have taken a 10mth leave from work and have come back to the States to help out with things while my mother and father navigate this time. She actually has ampullary pancreaticobiliary type adenocarinoma. Her scan showed a 4.6 x 3.7 mass which had infiltrated into her duodenum but none of the surrounding vasculature. She did however have positive nodes in 2 periaortic lymph nodes, a L supraclavicular node and a R mediastinal node (h…
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Healthy for 65 years then PanCan came out of nowhere
by NightTrucker- 1 reply
- 3.1k views
Hello I have been in the shadows reading every single comment that may relate to my dear husbands condition I would like some help in understanding this awful disease, my husband of 43 years was diagnosed with pancreatic cancer at the beginning of December 2021 aged 65, he has been through a battery of ultrasounds and CT scans and has had a stent fitted into his biliary duct to relive the jaundice the conclusion of the MDT at Queens Medical Centre is that he is borderline with 25% SMV and less than 25% SMA, he is scheduled for a three to four month campaign of neoadjuvant chemotherapy beginning on March the 2nd using a drug named FOLFIRINOX, the hope and plan is to shrink…
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- 4 replies
- 4.5k views
Been told 'months' but that could be anything from 2 to 12 ! No current symptons other than weight loss. Just interested in hearing about anyone who has had a similar cancer so I can put some plans in place. Thanks ZolaX
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Counseling
by HMcG- 5 replies
- 2.7k views
Hi there, my Mum was diagnosed with stage 3 PC in December 2021 and myself, my husband and our 1 year old daughter have moved in to care for her. We also help to care for my mother-in-law who has metastatic uterine cancer and is currently undergoing chemotherapy. I have recently returned to work after maternity leave and I'm finding everything quite hard to deal with. On the whole I feel I cope well and im good at keeping myself in check for my family, especially my daughter, but I've been thinking it might help to have someone to offload on to who I don't know. My husband and friends are very supportive and I know they would happily listen to my woes but I just feel like…
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- 6 replies
- 3.8k views
My 48 yr old husband was diagnosed with pancreatic and liver cancer mid December. A week later we met with oncology consultant who said he wanted to begin a treatment plan as soon as possible, he then had numerous biopsies/ CT scans around Xmas and New Year and started on FOLFIRINOX chemo last Weds 5th Jan, also had a pump fitted which was removed last Friday. It is all so new for us both that I have 100 questions and no-one to answer them. He seems to be ok from chemo but is still in terrible pain from the cancer. He is on fentanyl patches and morphine which initially appeared to help but now is not stopping the back pain and stomach aches. We have rang specialist nurse …
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Dad just diagnosed
by CJF- 4 replies
- 3.6k views
Hi everyone, I've just been reading some of the information on the website and some of the posts by others on this forum and found it all very helpful, so I thought I'd post about my experience. My dad is 83 and has just been diagnosed with pancreatic cancer - probably stage 4 starting in the head of the pancreas. He's not been well for a while, and over the last few months has been in and out of hospital a lot with heart and other problems, then in early Jan he had a fall and the paramedics who came noticed he looked very yellow and took him to hospital. Lots of tests and scans (ultrasound, CT and MRI) followed and we gradually got a clearer idea …
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Told no more chemo
by LindseyG- 6 replies
- 3.4k views
Hi, this is my first post on here and I feel quite nervous doing so as only a close circle of family and friends are aware of my Dads diagnosis. My Dad was diagnosed with metastatic pancreatic cancer in February 2021, after 3 months of feeling unwell. This came as a massive shock to us all. My Dad has had 2 rounds of 6 sessions of chemo and a CT scan at the end of each 6 cycle has shown the disease to be stable (thank goodness). The oncologist however had told Dad there will be no more chemo, and we can’t quite understand this. Before chemo Dad had lost lots of weight, had no appetite, and was struggling with his symptoms. He has reacted so well during and after…
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Recurrence in lymph nodes
by Nicky03- 0 replies
- 2.3k views
Hi everyone I hope you are doing as well as possible. I posted a couple of weeks ago, but have had no replies so thought I'd give it another shot! Anyone or anyone's loved one been diagnosed with a recurrence, particularly in the lymph nodes? For Dad, it's the para-aortic ones affected. What are the symptoms, how is general health and have you been told what to expect and signs of deterioration with this? We've been told next to nothing and feel a bit lost....he also has a v small spot on his lung- but its more the lymph side of things I want to find out about! Anyone help pls??.... X
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Dad has Stage IV
by fizzylemon88- 8 replies
- 3.4k views
Hey everyone, My Dad (57) was diagnosed with Pancreatic Cancer in May 2020. He had the Whipple's, followed by Folfirinox ending treatment in January 2021. His CT after that was clear despite pathology from surgery suggesting 4/16 lymph node involvement, we were starting to feel positive that treatment had worked. But in April he started to experience abdominal pains. It wasn’t until recently he was referred to another CT followed by a PET. This confirmed our worst fears, it had spread and further anomalies were detected. One growing localised though around a vein so inoperable, however a second more concerning legion was found in the abdominal wall. He’s still not st…
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Recurrence in lymph nodes
by Nicky03- 0 replies
- 2.1k views
Good afternoon Has anyone's loved one or yourself been diagnosed with PC recurrence in the lymph nodes? My Dad has had a recurrence in his para-aortic lymphs and it would be great if anyone can shed some light on their own experiences with regards to general health, what to expect and any treatment options...info for this seems non existent. Thank you x
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I have been a silent observer of this forum since July when I first had an inkling that my husband was unwell. He had complained of tiredness, but I didn't pay a great deal of attention - he is 84, plays a couple of rounds of golf every week and is a hard-working committee member at the golf club. Wouldn't you be tired too if you did all that at 84 ? Then he had some discomfort in his abdomen which caused some 'tightness' around his chest, so having survived two heart attacks almost 50 years ago he reluctantly took himself off to the doctor. An ECG showed that his heart was OK, so the doc took a blood test and that's when the nightmare began. 'Very high liver enzymes' …
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Time and Making Plans
by Arthur0601- 3 replies
- 2.7k views
Hi, I have been reading through this forum with great sadness at all that people are going through. I'm from the UK but not actually living there, so I hope it is still okay to post here. Our situation is that my friend, S and myself are both ex-pats. He is 65 years old, is a widower and has no children. We've been friends for a long time and I have been his `person` throughout his journey with this disease. He was diagnosed in August 2020, when a routine health check for work showed a CA19-9 of 8,000. He had some rounds of chemo to reduce the CA19-9 so he could have a Whipple. The first chemo, florinofox wasn't` very effective for him, so he w…
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- 6 replies
- 5.5k views
Everyday is different following my husbands passing. A lot of times I find it so so heavy to carry and too frightening to managing further than day by day survival for myself and also for our children. My best friend, soul mate and loveliest husband and father to our two children 11 and 8 was diagnosed shockingly on the 22nd of Oct this year ‘2020 and passed away at home the 26th oct this year. 4 days! We had 4 days! The week before he, a teacher, was teaching a class of 30 children primary school age and walking 38000 steps a day with our dog. He complained mildly of constipation and right sided pain at the beginning of October but X-rays and uss showed nothing. We ca…
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Unsuccessful Endoscopy
by Lornacath- 4 replies
- 2.5k views
Hi, my mum (77) was diagnosed with Pancreatic Cancer 4.5 months ago after being unwell for a couple of months then developing jaundice. A stent was fitted and enzymes proscribed and her health picked up quite a bit. A Whipple operation was initially planned but mums over all health was deemed too risky to go ahead. Last week she had another Endoscopic procedure to take a biopsy of the cancer so they could proscribe the best chemo option for her. Today was told this was unsuccessful and they are no further forward with any treatment plan. My family and are are so concerned that time is marching on and her cancer could be spreading. She seems a lot frailer, more tired, unco…
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He is virtually housebound….?
by L28dmr- 4 replies
- 3k views
Hi all, my dad has a pancreatic disorder, I’m sorry I cannot be more specific, he won’t talk about it. All I know is that he takes Creon tablets - many of them, and he has upset stomachs and diarrhoea to the point where he won’t leVe the house incase he need to go. As a total newbie to this, and this has been happening for maybe the past four years - I just don’t know how to help? The problem has be exacerbated by my mum passing, and he’s now incredibly lonely - but can’t come to visit us as he’s scared to leave his home toilet…… does anyone have any advice or help they can offer? Or does this condition actually make you housebound? Thank you in advance.
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- 4 replies
- 3.6k views
Hello everyone. My dear mum received a shock diagnosis of pancreatic cancer at the beginning of May. She is 76 years old, previously fit, healthy and active. Her only symptom was intense itching all over for a couple of weeks. The GP told me he was worried about obstructive jaundice and ordered urgent blood tests which confirmed his thoughts. She was told to go to the Day Unit of our local hospital and may be admitted. This was the Thursday before Good Friday. They didn't seem too worried, looked at her notes and said they thought the cause of this was a previously diagnosed gallbladder polyp which she had had for about 5 years, but was left alone as no symptoms. T…
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Chemo care box - GEMCAP
by sutton0607- 4 replies
- 2.6k views
Hi all, my lovely mum has been diagnosed with inoperable pancreatic cancer. At first, they didn’t think chemo would be an option as she had a nasty infection following her EUS to obtain the biopsy. However, since having her axious drain fitted, she’s improved enough to consider chemo. She’s having her CT scan/bloods in the run up to having it but they plan to give her gemcap. I had thought about putting a “chemo care box” together for her but I’m totally lost as to what to put in it! It’s only a 30 min infusion so she’ll be there 60-90 mins (providing all goes well). Does anyone have any suggestions as to what would be a useful addition to the box please? thank …
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That time of the year
by Dr. Evil- 1 reply
- 2.4k views
Hello all. New to the forum. I am here on behalf of my one & only mother who turns 72 next month (in 3 weeks time) She is still very much with us, but got her PC diagnosis back in late march and needless to say it`s rough seas in all directions now. Initially we put our trust in chemotherapy to combat this terrible disease and to help shrink the tumor but the sad fact is that she has paid a very high price going through chemotherapy for ca. 3 months. It really threw her across the floor and she is still dazed and confused now approx. 2 months after coming off the chemo. Infact the tumour grew slightly during her chemo but what little specs of spread on her liver was t…
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- 3 replies
- 3.4k views
Hi all, My mum was diagnosed with inoperable pancreatic cancer on 1st July. She’s 78 and not able to tolerate any chemo. She had a bile duct stent fitted in hospital after which I transferred her to a lovely nursing home where she is very comfortable. She also suffers with Alzheimer’s and can’t remember her diagnoses which results in her not understanding why she is in the nursing home. She has enjoyed her ‘convalescence’ but would now like to go home. Sadly she wasn’t coping well at home without my help prior to her cancer diagnosis and now I feel she will need 24hour care despite still being physically quite well for the time being. I know she wants to go home but I bel…
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Advice if you have any
by Slopez- 5 replies
- 3.4k views
My 60 year old husband of 34 years was diagnosed with a 2.8 cm tumour at the head of the pancreas in Feb 21 after a bile duct stent was fitted due to jaundice in Jan 21 Unsuccessful whipple due to tumour attached to numerous veins and arteries so palliative bypass surgery undertaken instead. Recovery from surgery has been good but he has lost 2.5 stone since Jan 21 and has so little energy. He has been started on palliative Folfirinox chemo which began last week ....the past week has seen what little energy diminish to nothing. Nausea diarrhoea vomiting and now he won't or can't eat and will only drink little sips every few hours. Anti emetic..meds..zomorph...oramorph..…
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Mum Diagnosed Operable - Questions
by Daughter001- 2 replies
- 2.3k views
Hi All, Gosh I don’t know where to start.... I’m trying to be brave and as helpful as I can but to me it’s the unknown that keeps me awake at night. My mum has been diagnosed with pancreatic cancer this is operable which is the best outcome from what I can see. They have said there is a high possibility of a full removal of the pancreas and the spline. My worry is what happens next.... I keep reading these very low survival rates after 5 years, and it terrifies me. Can anyone shed any light on their situation and how they have coped throughout this. I am being a here for my Mother and don’t show her the worry but it keeps me awake…