Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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My Dad was diagnosed in January
by Zinky1976- 1 reply
- 3.1k views
Its been a heck of a few months - Dad was diagnosed in January after he became visibly jaundiced and finally told family GP about the change in toilet habits. Had a stent fitted and jaundice subsided. We were initially told my dad was a candidate for surgery - but there has been spread to some nodes and this is no longer and option - was told he would be a candidate for chemo then - and as he was strong enough and a decent weight - he could have the stronger treatment. He has a telephone consultation with Oncologist next tuesday - but no idea when treatment will start and he is getting progressively weaker and weaker - hasnt eaten properly for about 2 wks now - after a l…
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- 2 replies
- 3.2k views
My loved one was diagnosed PC July 2019... Whipple... folfirinox chemo... radiotherapy... then another followup CT scan, fully expecting good news, potentially all clear... No. Now on gemcitabine, last 10 weeks. Had last CT scan 3 weeks ago... She's getting the result tomorrow Fri 23rd (on her own with her oncologist, due to Covid safety)... She has the strongest "brave face" I know, but inside I know she's scared... I'm terrified. We'll know after 11am tomorrow. Fantastic if it is good news, if it's not, if it's the elephant in the room! I don't know.
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Concerned husband 1 2 3
by Saxon- 57 replies
- 91.5k views
After a year of suffering from stomach pains, taking numerous pills that didn’t seem to have any impact, an endoscopy that found nothing wrong in August, last year my wife had an ultrasound at the beginning of December. She was called back the same day to the surgery for a blood test, as they had found shadows on her liver and they booked her in for a CT scan the following Wednesday. That weekend she had swelling in her leg and it became painful to the touch. She went to the doctors on the Monday for her leg and was told that she had phlebitis and was told at the same time that she has elevated cancer markers in her blood for bowel, breast and pancreatic cancer. On th…
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Looking for some clarity on my aunt's diagnosis
by mwall314- 2 replies
- 3k views
My aunt was diagnosed last November, and was initially given six months to live. I'm trying to work out the medical side of things, but she gets quite confused whenever she speaks with the doctor, and her husband is useless so it's not even worth asking him what the doctor has said. She's quite young still, she only turned 59 last Christmas, and they have given her six chemotherapy treatments. Since then they've said that her 'markers' have gone down from 34 to 11, but she went for her scan and when she went to get the results they had lost them! I'm fuming, and I've said I'll call the hospital and tell them that they need to sort this out as my aunt doesn't have as l…
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Confused
by Aceshigh- 4 replies
- 3.1k views
Hi. My husband is 71yrs old. He has not been well for sometime. Frequent visits to our gp have resulted in our being no further forward in finding out what was causing symptoms such as unexplained weight loss, fatigue, balance and coordination issues, vomiting and diarrhoea, pain in chest/abdomen. On 25 February I had to call an emergency ambulance when I thought he had had a stroke as his eyes were rolling and his speech was slurred. It turned out that his blood sugars had dropped and he was having a hypo. He was admitted to hospital and it was there that they discovered that his liver function was abnormal and a US located a mass near his liver. A subsequent CT scan rev…
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Radiotherapy and chemo together
by JayneP- 4 replies
- 3.2k views
Hello - I was diagnosed with inoperable PC in July 2020. Was extremely angry to be diagnosed at 52 and being a healthy eater, energetic and watching my weight. I was a size 6-8, hovering around 49kg and 5ft2. It’s inoperable due to its location near to blood vessels. I was doubly upset about the diagnosis as my Dad died of PC on Christmas Day 2010, 6 months after diagnosis. Apparently it’s not hereditary so I was told - just bad luck - bit insensitive. I have just finished 6 months of FOLFIRINOX chemo in February. First cycle put me in hospital for 11 days - my weight dropped to 37 kg and I couldn’t eat or drink without being sick. Admitted to hospital and put on d…
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Mood swings
by Jess- 3 replies
- 3.1k views
Hi, I wondered if anyone had noticed a change in there loved ones moods taking GemCap.. I realise the whole trauma of PC alone is enough to cause massive distress.. But this seems worse during treatment.. Some times he is high and wired and the next angry, cursing and slamming things..i find myself on eggshells not knowing which it will be. Its very out of character.. Thanks.
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Water Retention
by Skippy- 18 replies
- 5.5k views
I was wondering if any one had exp of or can give advice on dealing with the body-water retention to hips, thighs, legs and feet ? Is this a natural symptom of PC and its spread? Patient eating reasonably well no pain, but weight loss obv to upper body which is very thin, whilst lower body is bloated. The patient is exhausted and reluctant to walk about much in last few days Thank you
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confused about moms diagnosis
by Laurenxoxo- 2 replies
- 4.7k views
Hi everyone, I am new to this forum. Two years ago my mom was diagnosed with stage 2b pancreatic cancer. She had the whipple, and 12 rounds of folfirinox. About two months ago another tumor on the pancreas was found. the dr told us she should have 3 rounds of gemzar & abraxane then they would do a scan. Her scan is next week, but the dr mentioned that this now becomes stage 4 since it is a recurrence and that she may be on chemo for a very long time. Is this worth it? How do I ask the dr if it’s worth it and will it really prolong her life - any suggestions welcome
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Pancreatic NET
by Ju139413- 3 replies
- 3.4k views
hello, I’ve been under the care of the hospital who have been investigating a cyst on my pancreas. I had had scans, endoscopies, etc. and were monitoring me and last July I had a further scan. I got a phone call to say it had got too big too quickly and they wanted me in hospital. I was advised to have a Whipple procedure to remove the pancreas head. To be honest there wasn’t a choice, there was no way I was going to leave it and see if it got any bigger. My dad passed away from pancreatic cancer so it’s always been at the back of my mind. So, I had the op, had lots of complications and had to spend a month in hospital recovering. My results came through whilst I was stil…
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Chemo break
by Vasil- 0 replies
- 2.7k views
My father did 12 rounds of Folfirinox and is taking the "chemo break" with re-scans every three months. However i have heard of the so called maintenance therapy when there is no chemo break but they take two of the medicines out of the combo and the patient goes on with the treatment. Does anyone know which of the two options is the better one? We will be contacting another oncologist for a second opinion. Can anyone give an advice?
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Bad re scan results
by Essee11- 1 reply
- 2.7k views
Hi everyone My dad had a rescan after 6 of 12 round of forfilox sadly it’s bad news and hasn’t stopped cancer growing. Also they consultant said they can now see fluid on other organs which is sign of starting to spread. He has been switched to a different 30 min chemo for next 12 weeks. Prognosis was 3-6 months max. Can’t believe it. Does anyone have similar experience they could share x
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Hello all newbie here
by AmandaP- 1 reply
- 2.6k views
Hi all, my mum is awaiting an EUS with biopsy as two (what we have been told are Cysts) have been picked up on a CT scan she had in December. My mum is in remission for Non Hodgkins Lymphoma and also had surgery two years ago for bowel cancer. She had chemo after the bowel cancer (to mop up as there was no spread) The CT scan was a routine one. I appreciate this forum is for those already diagnosed but I’m obviously very worried. Mum seems well on herself, she says she doesn’t have any strange symptoms. She does have bowel issues but I know the resection surgery she had can cause this too. My dad had cancer twice and we lost him two years ago. Im all too familiar wit…
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Chemo sickness
by Mumshelper- 3 replies
- 2.8k views
Hi everyone, I’ve been reading everyone’s stories since November, cried with you, smiled at your loving memories and felt the turmoil of this awful disease. My mum has just had her first round of chemo and was just wondering if anyone has any suggestions to ease the sickness? It breaks my heart to see her like this, ironically she has been so well until the chemo which we knew would happen. She has tablets, been having mints, ginger beer, ginger nuts, got her sickness bands on. I know obviously this is a very common side effect but I would do anything in this world just to make this daunting journey a little bit easier. She is on FOLFIRINOX so not allowed anythi…
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Bypass surgery - info anyone?
by Vasil- 3 replies
- 3.6k views
Has anyone of you or your beloved ones had bypass surgery for blocked stomach / intestines (gastrojejunostomy)? Could you please share some info on course of recovery, diet recommendations etc. Does it interfere in some way with chemotherapy? Is one able to proceed with chemo in an easy way after such a surgery? it is about my Dad who had this procedure a couple of days ago. Surgeons did not put a stent but had him operated. Thank you!
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Not coping with uncertainty
by SarahLost- 12 replies
- 4.1k views
Hi, So my Mom was diagnosed with pancreatic cancer around Christmas after having symptoms (which were constantly put down to indigestion or blood sugar/ diabetic issues) since August. We have now been told it is t3, n1 and that it is inoperable. She is starting chemo in next two weeks. I have two small children and a partner but he is very little support practically or emotionally. I have my step-dad and brother but no other close family. From day one I have understood in myself that my Mom is not going to get through this, I have been distraught for a number of weeks but seem to have levelled off a little and now shift between everything being ‘normal’ or bad d…
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FOLFIRINOX - 12 rounds
by Essee11- 6 replies
- 3.7k views
Hello My dad has just had round 6/12 of chemo and had rescan before final 6. We are awaiting the results next week. I imagine he will manage the full 12 rounds as coping quite well. Can anyone tell me experience of what happened after the 12 rounds and how your loved ones did? Thank you
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Pain and risk (with Whipple or nano kinife)
by lucyjev- 1 reply
- 3.1k views
Hello Pain My brothers tumour is stage 3 inoperable (in the body and very close to major arteries). It hasn't spread. He was diagnosed in August 2020 and before starting chemo (floforinox) he was in acute pain. Does anyone have any strategies for how to manage / prevent pain? Risk Has anyone had any successful experiences with doing things outside of the consultant - second opinions, nano knife (maybe Heidelberg but UK would be better) to remove tumour or using other drugs / methods to shrink? I suppose what I'm trying to find out is how risk adverse the consultants are....
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Hubby recently diagnosed inoperable Pancreatic Cancer
by Millie1963- 10 replies
- 4.4k views
Hi, my darling husband Patrick was diagnosed a few weeks ago with stage 4 PC which has spread to the blood vessels and a few lymph nodes, they have said it is inoperable and we are totally devasted and in shock. We have been together for 30 wonderful years and had made plans to take early retirement in August, he is 61 and I am 57, we were so grateful to be in a position to be able to afford to do this, then the bottom fell out of our world I spoke to a very kind and helpful Senior Nurse at the hospital whilst he was having a stent put in because he was jaundiced, she said that they wanted to do a CT scan to see if the cancer had spread to the lungs and heart. She to…
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Diagnosed at a very late stage
by Motherhen- 4 replies
- 4.6k views
Sun 25th Oct 2020 - 3 weeks ago today, my 78 year old widowed father was walking, talking and fending for himself. Fast forward to Sun 15th November and the same man is bed bound and probably hasn’t got long left to live. My father suddenly became unwell 3 weeks ago - he began shaking, was pale, feeling sick and just looked very unwell. A family friend had called in to see him and called me to come over. I took the decision to take him to our local A & E. After initial assessment they kept him for further tests. A couple of hours later the hospital phoned to advise that my Dad would be staying overnight for more tests and to be kept in for observations. Tues 2…
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My Lewis
by LisaC- 8 replies
- 4.1k views
Hello I am here sadly because my fiancé has been diagnosed with a large mass on his pancreas with liver mets. He is due to have his first chemotherapy tomorrow but he is so weak and confused, the bloods taken today show he had a high calcium. He has been confused and falling asleep mid sentence the last couple of days. We thought due to the increasing doses of analgesia and pregablin. He is only 37 years old and I am 34. He had all the symptoms for months and refused to be checked out by the hospital as he did not want a covid test (his biggest fear) so waited for the GP who took their sweet time and just prescribed lansoprazole, there were deranged liver bloods but th…
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Feeling robbed.
by Essee11- 12 replies
- 4.3k views
Hi everyone. My dad has stage 4 pancreatic cancer and I struggle so much at night times. I’m fine and happy ish through the day then a wave of sadness hits me and stays for hours Dealing with this during normal times must be horrific but I can’t help but get so angry about my dad being robbed of normality because of this stupid virus. What upsets me the most is I constantly think about what it must be like to have a funeral amongst this for a sociable man with hundreds of friends and being robbed of that. Does anyone else have these feelings
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Help identifying if end of life approaching?
by zoc2020- 3 replies
- 3.4k views
Hi, Someone close to me was diagnosed with Pancreatic Cancer 4 months ago. No treatment could be offered. The family was advised between 3-6 months life expectancy. Up until last week she could look after herself relatively well however within a week she is bed bound and not able to even to go to the toilet unaided. However she still has a sharp mind and can have a full conversation. I would like to know if anyone had a similar experience in how quickly someone deteriorated and how long of a battle was it from this point. The deterioration in just over a week has been very scary for the family and the doctor has yet to really explain what is happening but has pres…
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Hello - first post
by Essee11- 8 replies
- 4.2k views
Hello I’m so sad and angry that I find myself here I almost don’t know where to begin. I’ve been reading some posts and I’m devastated for everyone. I’m 34 and in sept my dad who is 63 was diagnosed with stage 4 pancreatic cancer. He has started chemo but isn’t doing to well with it. He had emergency surgery due to a blockage in his intestines caused by the tumour and since then his quality of life has been so poor. Before the surgery he still had a good appetite, could manage a drink in the pub etc now all that has stopped. My dad worked so hard to be able to give him and my mum the best retirement and I can’t help but be angry that he won’t be here to enjoy any of …
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Roses?
by Celeste- 1 reply
- 2.4k views
Hello fellow carers, Bit of a weird question but it is bugging me: since returning home from his latest hospital stay, my husband does not smell the same. I gave it a few days, in case the hospital scent was sticking to him, but there it remains. Anyone encountered that? It is not a bad smell, just different. If yes, any clue what it is and does the normal smell come back?