Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
652 topics in this forum
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How could it go so fast?
by rufusthedog- 2 replies
- 13.1k views
Hi all, My lovely mom passed away last week after fighting a very tough battle for 8 months. She was 67 years old. I will never forget the night we found out her diagnosis; pancreatic cancer that had spread to her liver and lungs. It was earth shattering. Despite knowing the stats, over the course of her 8 month battle I lived with (false) hope that she would somehow be the exception to the norm, as I'm sure many of you did too. As long as I still had my mom, I wasn't thinking to much about the end. For the first few months, the chemo was working. However, as time went on, it started to be ineffective and became harder on my mom's body with each round. Her pain increa…
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Should I get a CT?
by rufusthedog- 2 replies
- 12.2k views
Hello, I know that nobody will be able to give me a definite answer on this but i'd still like some opinions. I am a 30-year-old female. My mother passed away at age 67 from pancreatic cancer last week. Cancer runs like wildfire in our family, with every member of my mom's family passing from some form of cancer. We all have the BRCA mutation. A few months ago, I had some stomach pain under my ribs for a few days. I went to the gastro who sent me to do some blood tests. The CA-19 came back as 39.7 (the normal range is between 0-37). I freaked out and I was convinced I had pancreatic cancer. I scheduled a CT. Before doing the CT I had the marker checked again and it…
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Thank you for activating my account, and for allowing me to join the forum. It goes without saying that I wish that I did not have to seek it out in the first place. Before I explain why I am here, I would just like to say this. You are warriors and heroes, every one of you. The patients, the families, and the medical contributors. This set of forums provides solace and often a ray of hope to many people, including me. Numerous things that I have read here have resonated with me and my recent experiences with this dreadful disease. I expect that some of the things that I have to say will also resonate with others. I hope that whatever I am able to contribute will go so…
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New joiner, widowed in January
by ChrisTan- 3 replies
- 11.2k views
Hi all, I'm here after three months of being widowed by this vile disease. Taking the first step towards contributing to research and making some sense of my amazing brave and beautiful husband, Mal, of only 11 years. I'm coming out of the initial shock of his sudden deterioration and subsequent demise....for a long time my recent memory of him dying right there in front of me was too traumatic. Fortunately he was granted his wish to end his days at home by the hospice. He was diagnosed in May 2017, treated with Folfirinox from July, became diabetic, then subsequent treatment in November because the tumour grew - GemCap which ended on our 10th wedding anniversary. Radiot…
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My husband Dan
by Fernack45- 15 replies
- 28.7k views
Hi all, I have been reading the posts on this forum since my husband was diagnosed with stage 3 PC five weeks ago. I have found the posts invaluable in helping me get my head around the diagnosis and for what is to come so thank you all. Dan is my husband aged 45. I am a registered nurse. We celebrate 20 years of marriage on the 15th January. We have 2 daughters, aged 18 and 10. Dan started with vague abdominal and back pain and GP said it was probably muscular pain.. If only eh... He had an ultrasound scan, blood tests etc. Was admitted to hospital on 28th November due to deranged liver function and jaundice. Whilst in hospital he had a CT scan which showed a tu…
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Confused and worried
by Moonlightandjj- 4 replies
- 12k views
Good Afternoon, I am not sure if I am being too over protective or not, but I am worried about my recently widowed dad. On the 29th March he had the Whipples Procedure done, and spent longer in HDU then expected and was moved on to a surgical ward last Friday night. Saturday he got out of bed for the 1st time, sat in a chair, still had all tubes etc in place. Sunday had to stay in bed. Monday was allowed up and walked a bit and was told he could go home next day ( yesterday) if all was ok. This came as a shock to all of us, as we was told before operation and in booklet it would be minimal 2 weeks stay, and everyday a little bit more walking etc. Well yesterday ( …
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Advice please, NET
by jac98- 1 reply
- 9k views
Hi all. I'm new here and am hoping you may be able to point me in the right direction. My dad is 70 and was diagnosed with a pancreatic neuroendocrine tumour 2 years ago. I live hundreds of miles away from him and my mum and they attend hospital appointments alone. The problem is that they get very confused, don't ask the medical staff any questions and often can't remember what they've been told. Dad has just had his annual scan and says that because he cannot have surgery on the tumour (due to his many other health issues), he has been told there is nothing more to be done and to return if he has symptoms (pain in the abdomen or back). No more follow up scans booke…
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Options for my mum
by Ozoda- 3 replies
- 11.2k views
Hello all, My mum was diagnose with pancreatic tail cancer in June 2018, it was stage T3N1M0, or borderline rescectable at the time. I am British, but my mum isn't, so in order not to wait for her visa, we took her to a private Israeli hospital in Ukraine, where she was put on GemCap. She had 5 cycles of 35% reduction in dosage due to toxicity, and the tumour has shrunk. However, in November she developed pleurisy and they decided to stop chemo. She went back home for two months. We brought her here last week to continue treatment privately. She had PET CT and MRI scans, and unfortunately they found multiple liver metastasis. We saw a private consultant-oncologist, …
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- 0 replies
- 7.8k views
Hi all, Does anyone have an experience of caring for their loved one in early pregnancy? I am in my first trimester. My mum has pancreatic cancer with liver mets and is about to start on Gem-Abraxane. I am her carer. Are there any precautions I need to be aware of? Thank you so much x
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- 6 replies
- 14.7k views
My husband was diagnosed Sept 2014 stage 4 - pancan - liver mets. They gave him less than one year. Here we are, scan stable, so his oncologist will put him on edoxan ( oral chemo) because he feels tired. Anyone experience with this chemo? Thanks Sept 2014 : folfirinox, then folfiri, 5 fu maintenance; gemzar, taxol, now endoxan
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loosing hope
by Charlie81- 9 replies
- 16k views
I know that people come here for hope and for solidarity and there are some amazing people on here. In particular KeithKerry and toodotty, for their wisdom and bravery - they astound me, and veema have really struck a chord with me as a post she wrote about her Dad could have been written by me. However, tonight I can't write a hopeful post. I am lost. For those of you that haven't read one of my posts my, 64 year old, Dad has been diagnosed with pancreatic cancer. I can tell from other posts on this forum how much we all love our loved ones and I can hear how special and unique each of them are to you all. So I would like you to understand a bit about me and…
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Does it get easier?
by ashc101- 7 replies
- 15.8k views
Hello everyone When I first stumbled upon this site, I thought it was one of the best and one of the worst things that I have come across. The people on here are so kind, strong and brave but it saddens me to see so many facing the cruelty of this malicious disease. I'll start by saying that I don't know what I'm looking for as I write this. Perhaps some kind of support from people who really know the depth of what my family and I are facing, some kind of cathartic relief just from writing all of this out or an actual answer to: does this journey actually ever get any easier? I'm not sure. But here goes nothing: My father is 62 years old and he was diagnosed wit…
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Husband
by Debz- 2 replies
- 9.5k views
My husband has just been diagnosed, the first hospital said it is operable and has not spread . The second hospital have repeated the scans and may do a keyhole camera! I do not understand why they are not going to operate straight away can anyone help me with this question! Thank you debz
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The fight goes on
by Annabelle- 5 replies
- 12k views
Our journey with this horrid disease has not been good and as many of you have found out it seems as though we have had to fight to get treatment, and when I feel strong enough I will share our experience, but this is where we are now........... Today we went to see the Oncologist for the results of my Husband Lez’ midway scan etc., his tumour has shrunk slightly, CA19-9 markers are down significantly, node on the lung no apparent change.....no chance of an operation to remove the tumour...and so we carry on....6 more cycles of folfirinox if Lez can tolerate it, so far his experience of the chemo has been reasonably tolerable and not as bad as feared, fatigue yes but man…
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post deleted
by Freaki- 1 reply
- 9.3k views
deleted post because no reply’s, so no point it being here.
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Just needed some guidance really
by R19902009- 3 replies
- 10.1k views
My dad is been told he’s terminally ill when pancreatic cancer he has is also in the liver and in surrounding lymph nodes of pancreas he was diagnosed in June 15 4 days after my sister turning 18 had a stent put in due to itching and jaundice he’s had the whipped prodceedure done sept 15 gemcitbine in Oct 15 finished in may16 he then had Folfirinox in may 17 completed in nov 18 he then had chemoraidiotherapy feb 18 finished March 18 then he had second line chemotherapy in aug 18 he had 4 cycles of it to be told it’s not working in December 18 he’s under guys cancer centre for all this he also had to time with blood clots in the kidney which he still has injections whi…
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Fundraising for Pancreatic Cancer in memory of my Big Brother Kam
by BromsgroveSister- 1 reply
- 8.7k views
Hi I hope I am allowed to post this on this forum. I recently lost my big brother to this horrible disease. My family have all decided that throughout 2019 we will do as much fundraising to support Pancreatic Cancer Uk. My own effort will be a Half Marathon in April 2019 if anyone would like to support me. Here is the link to my Just Giving page which includes my story. https://www.justgiving.com/fundraising/Sumana-Bassinder2?utm_campaign=lc_frp_share_transaction_fundraiser_page_donation_received_-_nth_donation&utm_content=a7c3ef61-3ba5-48c4-a42f-eaed6679bee4&utm_medium=email&utm_source=postoffice&utm_term=1547493791169 X
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Any advice/information
by Week20- 0 replies
- 7.9k views
Hi all I was diagnosed with inoperable adenocarcinoma. stage 3 tumour as it involves the vessels locally at the begin of dec. I have had a stent fitted and hopefully starting chemo in the next 2weeks. My head is all over the place and my mind running a million miles an hour. Any experience, advice or knowledge good or bad is needed Thanks x
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Lots of questions about this awful disease :(
by shazc1964- 1 reply
- 8.9k views
We were told on the 1st November of my Mums diagnosis. She had been fit and healthy before developing jaundice. A week later she had a stent fitted which has relieved the jaundice.We were then told that Mum wasn't suitable for chemo as it would shorten what time she had left. Mum doesn't want to know what to expect but I'm finding this difficult. What should I expect?
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My Mom’s journey - advice appreciated
by JMorphy- 7 replies
- 16.3k views
My 80 year old mom was diagnosed July 4, 2018 with pancreatic cancer after suffering some abdominal pain and vomiting. According to the CT at the end of June, the tumour, on the head of the pancreas was about 4 cm at that time, and there was no evidence of metastasis. The doctors gave a prognosis of 3-6 months. A bile duct stent was put in about 2 weeks after diagnosis, as she had become quite jaundiced. My mom weighed 90 lbs when she was diagnosed and her weight has remained stable, although I have no idea where it would come from if she lost any more weight! She had been living independently on her own and we moved her in with me when she was diagnosed. Everything has …
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New to this ...
by Hii- 0 replies
- 8.4k views
Hi Thanks for letting me join . My mum who is 87 had a ct scan in September after being jaundice having weight loss and a lack of appetite this found she had pancreatic cancer within 4 weeks she had a metal stent put in after she had had this we were told it had spread duodenum and had suspect nodules on the lungs they gave her 6 months. Since then we have had no other information appointments or options we have just been left to get on with it . I know shes older and would probley not go for any treatment but surley we should have been seen by someone it seems if you dont have any treatment your left guessing what to do ?? She is getting weaker through lack of food a…
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Dealing With The Loss
by AGiles- 10 replies
- 16.7k views
Decided I needed to pluck up the courage to talk to people who have been in my position. I lost my dad 3 years this January and I’ve accepted I need to open up and be honest with my feelings. Abit about my story because getting this off my chest will help me recover. I’m 27 lost my dad a few months after my son was born. My son was born deaf and I split with his mother when he was one. My son will be 3 in October and I spent all last year fighting for him in the courts to make sure I carried on having him 4 nights a week which I won. I’ve never stopped to think about myself and how I feel till I guess the last couple months where suddenly I’ve realised I’m struggling. Lit…
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Travel insurance...
by Mrshappy- 2 replies
- 10.4k views
Hi all As mentioned previously we are looking at planning lots of nice things over the next few months with my dad. I just wondered what happens with the above - we were looking at a weekend at center parcs which is obviously quite costly. I know things can change over night with pc so wondered if anyone had advice about how to manage this in case dad wasn't well enough to go ... Thanks x
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Update on my dad - gemcitabine chemo
by Mrshappy- 8 replies
- 17.3k views
Hi everyone We saw my dad's consultant yesterday who agreed definitely no more folfirinox. However she was happy for him to go ahead and try gemcitabine in a few weeks once he has recovered more from his last bout of neutropenic sepsis. I just hope he tolerates this much better and obviously it can control the cancer as long as possible. I did talk to the consultant about progression briefly and she was very vague which I do understand - it really is a 'how long is a piece of string' question. However while my dad is currently ok - no pain, eating ok and just a little tired - it's actually sometimes hard to believe how ill he is.... Would anyone mind sharing storie…
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Sadness
by Kerry- 11 replies
- 18.3k views
The last time I posted on here I was talking about my dads chemo and being accepted onto a trial. When starting this post I hesitated with the title and opted for ‘sadness’ as this is the overwhelming feeling I have deep inside right now. My dad’s chemo has stopped as he is too ill to continue (after two doses). He’s now in hospital with blood clots and fluid in his lungs, chest and urine infection along with the progression of his cancer. Whilst in hospital he tried to get out of bed and fell and banged his head and was being scanned for a bleed on his brain. We saw an oncologist on day one of seven days and she told me my dad is dying. The last few days have been …