Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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Gemcap and side effects
by Jess- 1 reply
- 2.3k views
My husband started Gemcap last Fri, he's beginning to feel some side effects today.. I just wondered how long it usually takes for side effects to develop.?. Thanks.
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- 9 replies
- 5.8k views
Hi all. I’m really struggling with the mental health side of living with someone with incurable cancer. My partner was diagnosed 18 months ago - his tumour was picked up early. But that doesn’t help much. Surgery not an option. 6 months chemo last year, 3 months radiotherapy early this year and now in more chemo. Since he’s gone back on chemo he’s been really angry and moody. (Tumour still growing and now signs of secondaries). The slightest thing will set him off. I totally understand that having cancer takes a terrible toll on your mental as well as physical health, but it’s really hard to cope with, especially as life is so restricted at the moment. I have to be really…
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Mistletoe therapy
by Buzzbee- 2 replies
- 7.4k views
Hi, I was wondering if anyone has used mistletoe therapy and what was your experience of it? Thanks in advance.
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Frustrations about decisions
by Debbiergn- 3 replies
- 5.3k views
Dad was diagnosed with suspected T2N1Mo Pancreatic Cancer on 4th August after CT scan on 20th July and severe Jaundice for a month prior. He has since had a Stent fitted under ERCP. He has been referred to Regional Centre for MDT to query surgery. He has now been advised to also have EUS as biopsies were not taken during ERCP due to delay in response from regional centre. He now has an Appointment at Regional Centre on 7th Sept. My query and frustrations are that it appears only due to my dogged determination in chasing information (I am a District Nurse) that anything is being done. I have questioned that CT to MDT is 7 weeks and was advised this is due to Consultant be…
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School reopening
by Jess- 1 reply
- 3.9k views
Hi, my husband is in hospital recovering from the Whipple op, hopefully he will be home soon.. We're not sure about chemo until the results are back... But our son is due to return to school next week he is 10.Im so anxious about the possibility of covid being transmitted to my husband... I realise how important my child's education is, but I'm really worried.. Is anyone else in a similar situation? What are your thoughts?
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Pancreatic Cancer and Whipple Procedure.
by Rht123- 0 replies
- 3.7k views
Hello, I'm looking for any help and advice anyone can give me regarding Pancreatic Cancer, the Whipple Procedure and Chemotherapy. Last week, following a CT scan, my Dad was told he has something in his Pancreas. Whilst its not 100% confirmed, they are pretty sure its a tumour. He has a follow up scan tomorrow to confirm the situation for definite and establish the next steps. They did say they don't think it has spread outside of the Pancreas. I imagine its been there since atleast February, he went to the doctors at the time as he was losing a lot of weight, but everything was put on hold due to COVID. He's also recently been diagnosed with Diabetes which will …
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Total pancreatectomy
by Jess- 1 reply
- 4k views
Hello.. I'm new to the forum. My husband 66yrs old has just been diagnosed with a suspected cancer in the pancreas.. The consultants have decided to do a total pancreatectomy.. He is already type3 diabetic and taking creon for chronic pancreatitis... It was only discovered after a failed attempt to fit a stent... I realise how fortunate we are to have the option of surgery.. But I'm really scared about the risk involved and complications that could follow the surgery.. Does anyone have experience of this type of surgery..? And what to expect?... The whole situation is made harder with covid.. As we cannot visit.. Thanks. Jess
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Dad's PC - Stage 4 with liver mets
by cmorris34- 2 replies
- 5.5k views
Hi everyone, It's my first time posting here though have been scrolling through the forums for some months now. Thank you so, so much for this space - it has been so helpful to read about other families' experiences and has made this whole experience feel much less isolating. Just to introduce myself - I'm C, I'm 21 and living with/caring for my dad, who is 74 and was diagnosed with stage 4 PC at the beginning of March. In dad's initial biopsy, the doctors discovered a secondary tumour on the omentum which was removed there and then. When the diagnosis came, we were made to feel relatively at ease by a consensus that things were bad, but moving very slowly. I stayed…
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Dad’s Pancreatic Cancer
by fizzylemon88- 1 reply
- 4.9k views
Hi everyone, I’m new here but have spoken to the nurses via phone which was really useful. Now I wish to reach out to the wider community. Dad had Whipple’s to remove a pancreatic tumour they found only two months ago. His pathology results came back and although they removed the bulk of the tumour, it wasn’t contained to the pancreas and 4/16 lymph nodes removed were cancerous - so it’s started to spread. Chemotherapy is the next step. I’m so grateful he was a candidate for the surgery, and hope this is helped to at very least extend his life, though I’m scared about prospects now it has spread. The odds are so scary but not sure if I’m being overly anxious, I’m…
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My Mum newly diagnosed PC
by gillb88- 1 reply
- 4.5k views
Hello My name is Gill. My mum was diagnosed with pancreatic cancer on Thursday 28th May 2020. She has a 3 cm tumour in her pancreas with lesions on her liver and also on her stomach lining. It is inoperable. She was in hospital for 2 weeks with clots on her lungs before she was told her diagnosis. At the moment she is at home, not eating much and is in some pain. We want to try and build her strength up and look at the possibility of chemotherapy if she is able to have it. Can anyone give me some advice on how to help her build her strength and if there is any ways I can help get through this dreadful time. Many thanks Gill
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Coping with the highs and lows
by Wonderwomanjo- 8 replies
- 9.3k views
It is my first post, I have read so many on this forum that I keep rereading the same things so thought I’d start my own. My dad (75) was diagnosed a month ago with a tumour in the tail of the pancreas, spread to liver and lungs. Chemo not an option. After the first 2 weeks, which were mainly contacting his GP to refer him to the hospice, Macmillan etc I was struggling with life. I am an only child and work full time with a family of my own to look after. The worry was just as much about my mum too. Last week, I felt elated, the hospice had sorted his pain meds, everything was under control and we could focus on enjoying the time he has left. Of course, hours after I…
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Newbie
by Pablo88- 3 replies
- 7.1k views
Mum was admitted to hospital 3 weeks ago as she ws constant nauseous and had ultrasound and ct scan that showed something on the liver and had biopsy 13 days ago, we found out yesterday results are in and it's been passed to pancreatic so I'm assuming that by going there it's pc she's fighting. We're awaiting a letter from the team so we know to what extent. But reading here I would hazard a guess that she's stage 4. She and an xray at the beginning of the year showed a shadow on the lung. She has also had a colonoscopy and was meant to have an appointment 31/03 to discuss Cs but was cancelled. She 1st attended gp at the tail end of the year, with breathing problems, gp …
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Hiccups
by Annieb- 4 replies
- 11.8k views
My husband was diagnosed in October, he had a bleed in November and wasn’t expected to survive. However after a stay in the hospice he plateaued and came home for Christmas. He is doing really well with his mobility but hiccups have been a major problem. Also he continues to lose weight and his voice his hoarse. There are no plans for him to have treatment and he hasn’t seen an oncologist. I don’t know why they aren’t doing any more investigations or monitoring but how do we know what the cancer is doing without this?
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My mum - Stage 4 PC with liver mets 1 2 3 4
by Dee123- 85 replies
- 229.3k views
Hi everyone, I am new here but I have been reading for a while. I thought I would log my Mum's journey on here because I have spent hours reading absolutely everything I can about Pancreatic Cancer and I know how helpful it is to find people with similar stories, even though I know that everyone is different. My mum is age 66. Here is her timeline: April 2018 - stomach pain that won't go away, above the naval and just under the ribs. May 2018 - doctors suspect a stomach ulcer but request a gastroscopy to make sure. Early June 2018 - during the gastroscopy, the doctor says it is definitely not a stomach ulcer but he has identified tumours in the duodenum wh…
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Genetic/Hereditary
by Andy3D- 3 replies
- 6.4k views
Hi, My mum (52) was diagnosed with inoperable pancreatic cancer a few weeks ago which we have been kinda expecting for a few months although the fact that they said it was inoperable had caused a bit of a shock to us all. She had been suffering some back pains since last year which she originally put down to pulling a muscle, after a few months of that not going away they thought she had something wrong with her gall bladder however once she had a CT scan they found lesions on her pancreas and was diagnosed after a second biopsy. She had hew first round of chemotherapy yesterday which seemed to go well, i think they have put her on FOLFIRINOX, we are hoping that will b…
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The nightmare so far.... 1 2
by AndAde- 40 replies
- 82.3k views
Hello, My husband was diagnosed with Ampullary cancer (adenocarcinoma) in January 2016. He underwent a PPPD in March 2016, and was prescribed 6 months gemcitabine to mop up any stray cells. He started chemo early June but by the end of August his weight had plummeted to 9 stone from 11 and a half, he was really poorly, and the consultant decided enough was enough, so the remaining 3 months were abandoned. He soon started to pick up, and by the time of his check up in October he was a little over 10 stone!! I mentioned to the consultant that he had a little cough that wouldn't go away, so she requested a scan. At his follow up appointment with the consultant on Dec…
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Fortisip drinks
by Dee123- 1 reply
- 13.3k views
Has anyone else been told that their doctors are no longer providing Fortisip yoghurt style drinks on prescription? My mum has been switched over to Aymes Shake Smoothie that she has to make herself from powder and they taste really bad! My mum enjoyed her Fortisip juices everyday, they help to keep her weight stable, but she doesn't like the new smoothies. Does anyone know if this is a decision across the NHS to no longer provide Fortisip or it is just our doctor?
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Work related Advice please for a carer
by Warwickshire- 1 reply
- 9.9k views
Has anyone who has been caring for a loved one gone back to work, found part time work etc? I find myself in a difficult predicament as whilst wanting to be there for my mum all the time and helping, financially, we are both struggling and I was wondering if anyone had any advice of how they juggle the two; without leaving their loved one without help needed. Many thanks,
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Chemo for the older patient
by StPancreas- 12 replies
- 24.7k views
HI , I've been lurking and much as I wish I didn't need to be here , sadly I do. You do seem a nice bunch though. My Mum has been diagnosed with PC , which has spread to the liver. The consultation appointment was very short, but basically said no treatment just palliative care. That was a shock - I thought I had planned for worst case scenario of inoperable but chemo. It took since last October when she first went to GP about unexplained weight loss. I have spoken to a PCUK nurse about this, as the consultant had not met her before this appointment and seems to base the decision solely on age . She is a very active 81 year old, living independently. She has no o…
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Recent diagnosis
by Alison1972- 5 replies
- 16.3k views
My husband had suffered from weight loss, stomach pain and several other symptoms since last year. GP continually prescribing ant acids and telling him loosing weight was a good thing. Went back in November 18 and spoke to a locom doctor who finally sent him to a consultant under the two week rule. Consultant ordered a camera down and a ultrasound. Both clear and consultant discharged him back to GP stating, this gentleman isn’t for me. Symptoms continued and after seeing 2 further GP’s in the practice another consultant appointment was ordered January 19, but this time not on the two week rule, just a bog standard appointment. After 5 separate appointments were cancelled…
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Holiday Insurance
by The_petal- 1 reply
- 13k views
Any recommendations for travel insurance. I have had the full whipple last year and after 6 months chemo was said to be clear. The quotes I have had for Majorca so far have either been we dont cover or £700+ !
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Anxiety overwhelming 1 and 1.5 years later
by Staystrong- 2 replies
- 11.6k views
Hello all. I haven’t been on here in a while. My story is that 1.5 years ago I lost my wonderful mum to pc after a 5 year battle and 5 months later we lost my dad to the same deadly disease only 2 weeks after being diagnosed with PC. I’ve really just been surviving. The last 6 years have really just been about surviving and prior to my mums death I never allowed myself to think of the inevitable, I tried to just stay in the now. People tell me how strong I am and how they couldn’t do it etc but as we all know here you don’t get a choice.i fed like the duck that is pleasantly swimming on the surface of the water but absolutely struggling beneath. I’m so overcome …
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Four week nightmare
by Winnieweg- 4 replies
- 13.1k views
I found this website and forum a month ago, August 17th, a Saturday..... Mum had a tummy upset and we noticed she looked a little yellow in her eyes. Nothing else, just that. Her GP sent her to AAU to get checked out. I was with her all day and as the tests increased, the ultrasound became a CT scan, the questions started getting more and more specific, I knew. I found this site and read up all I could. I applied for a 'newly diagnosed' pack, little did I know I'd never get the chance to even read it. We got her diagnosis, we awaited the MDT meeting decisions and in the meantime an ERCP was performed. That happened a week later. What a weekend!! Poor mum. She was grey, …
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My Sweet Dad
by Maku42- 1 reply
- 11k views
Dear All, I’ve joined this forum as I needed some support. My sweet dad was diagnosed with Pancreatic Cancer on 10 days ago. We have been advised that it is Stage 4, advanced and has spread to his liver. He had a CT scan in June which came back with the all clear, but he continued to have abdominal pain/diarrhea and the doctors advised it wasn’t anything serious. We ended up rushing him to hospital as the pain become unbearable and he was struggling. We received the heartbreaking news a few days later. The doctors don’t feel that chemotherapy is an option at the moment as it would only make him sicker, so it is difficult to watch him deteriorate. They …
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- 1 reply
- 13.3k views
I posted recently about my husband being diagnosed at the end of June and the rapid decline in his health. It has been such a rollercoaster ride with emotions being squeezed out of myself and his children. He was admitted to hospital recently with an infection and was extremely unwell. Family and friends were called to his bedside to say their goodbyes. The next day, he was sitting up in his chair and things didn't look quite so bad. Last Wednesday he was transferred to a care home nearby, the decision having been taken not to continue any treatment but to keep him comfortable. He was not considered suitable for admission to the local hospice whose criteria he did n…