Patient Experience Forum
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
280 topics in this forum
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IBS?
by HelenC- 0 replies
- 9.9k views
Has anyone else had really grim gastric symptoms with PC? I've had bloating for a while, for the last week it's been joined by diarrhoea and nasty gut spasms, which are quite painful. The bloating has also worsened. There are various over the counter options but I'm on so many drugs I don't know what's safe. I mentioned it to my GP and she's increased my pain meds and given me an anti sickness drug, but these haven't improved the problem. I'm stage 1, I had a failed Whipples 9 weeks ago and am due to start chemo within the month. I was starting to feel better but this is really dragging me down. I'd be grateful for any tips.
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Need advice as very worried 1 2
by jict- 38 replies
- 54.1k views
Hi there and I hope I'm posting in the right board as I need advice on what to do next. My problems all started back in April of last year when I noticed 2 fingers on my left hand ( pinkie and one next to it )had an occasional numb feeling and sometimes tingling. It comes and goes so didn't think much of it. This was followed by a cough which took a while to clear up but did eventually. Nothing much there as otherwise felt fine but a little achy now and again. Then onto May and ended up with an eye problem with floaters appearing and a flashing light occasionally - also happened when I was coughing the month before. Saw an ophthalmologist who said it was a partial v…
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25 year old male. Imminent diagnosis, I am almost certain 1 2 3 4
by longseason- 82 replies
- 117.9k views
Hello, I have not been diagnosed yet but fully expect to be over the next few weeks. Rest assured I am not a hypochondriac, though one or two doctors have implied this (and how I wish they were right). Anyway, over the last three and a half months I have experienced chronic, ominous and persistent symptoms that appear to point to nothing other than pancreatic cancer, despite the roughly one in two million odds of someone my age getting it( I have spent a lot of time reading up on it, who could blame me....). It all started with a loss of appetite seemingly overnight sometime in early August of this year. Around the same time as that I began experiencing mild gas and pa…
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Newly diagnosed
by HelenC- 9 replies
- 16.6k views
I'm a 51 year old woman, in pretty good health except that I was diagnosed with PC on 1st March. I've a single tumour which (when last scanned) hadn't spread. On 6th March the surgeons attempted a Whipples but were unable to get the tumour out due to location of key blood vessels; they bypassed my bile duct to stop the jaundice and sewed me back up. I'm now 5 weeks post op and still pretty uncomfortable with low energy levels. I saw the oncologist yesterday and they're recommending I start Folfirinox in about 6 weeks. I'm also looking into Nanoknife. I'd be grateful if anyone can share similar experiences. Especially: - how long does it take to feel even vaguely o…
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Three years post-Whipple - issues/ideas
by OldShep- 17 replies
- 31.6k views
It is now just over 3 years since my wife had her Whipple and approx 2.5 years since her 6 month course of chemo (Gemcitabine) ended. By the medics standards she is doing really well (she breezed through the op, surgery healed with no complications, chemo was no fun but tolerated OK and latest blood tests were good, she is slowly putting on weight) and they have her down as one of their successes. Obviously we are very thankful for symptoms that allowed early detection which meant her cancer was operable, and for the medical team who have provided treatment. Also I hope this provides some encouragement for those just starting out on this unwelcome journey, people…
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"Our Beautiful Tracy" - She won her Battle 1 2
by Ant11- 37 replies
- 49.8k views
It has taken us some time to post about "our beautiful Tracy". As many of you already know from Tracy's story and the support line video, she was diagnosed on 20th November 2013 with stage 4 PC with liver mets. Having spoken to the support nurses we will complete her story as soon as we can. In short Tracy endured nearly 60 sessions of chemotherapy without a break, a liver ablation and of late was on an immunotherapy trial. Sadly this vile disease progressed at an alarming rate over the last couple of months and although she never gave up her fight she passed away peacefully with her husband Chris and children Oliver and Georgia beside her at home on Saturday 19th …
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I was diagnosed with PC on 4th December 2012. It was at that time inoperable as it intimately involves blood vessels and the surgeon commented that there is only a slim chance that treatment would change the situation as far as surgery went. I immediately started on CREONS and my weight loss (2.5 stones in 2 months) stabilised and has not moved since then. Christmas was a struggle as we all agreed to make it as normal as possible, but there were moments where this was easier said than done. My wife, daughters and their partners have been really supportive even though it has been as difficult for them as spectators to see me go through the challenges of this thing. I have …
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We all need hope........
by Sones- 5 replies
- 13.4k views
For the last fives years I have visited this site daily but posted rarely. PC is a dreadful disease and has such a low five year survival rate. When I was first diagnosed I visited this site and believe me it gave me very little hope. However, I'm still here and all of us visiting this site, patient, loved one , carer, whoever, we need this hope, we need to believe that we can survive. Its a terrifying place to be when diagnosed but we are all different and none of us know what our outcome of the treatment we receive is going to be. I fortunately was able to have surgery, my tumour was diagnosed as grade three with three out of ten lymph node involvement. I know I'm "l…
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74 yo pancreatic cancer
by splitlivez- 3 replies
- 12.5k views
My mother is 74 years old, perfectly healthy no symptoms. One doctor ordered for some tests during her annual check up. CEA turned to be 39 and CA 19-9 was 314. We did a CT which showed a 13 mm tumor in pancreas uncinate process and no evidence of any other involvement. We did MRI it showed the pancreas tumor was 30 mm and there is a very suspicious line like lesion on the liver. She got a pet ct and waiting for the report. I am so confused and lost, can someone make any sense of what I just mentioned, I'd be so grateful Thanks
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Should I push for quicker tests
by Roni35- 16 replies
- 26k views
Hello, I posted on this forum some 6 months ago with similar symptoms as I have just now (although I had no bloating and they didn't seem as severe). I never had any testing done then and I have been completely fine up until now. At that time I was also diagnosed with acid reflux although I never had most of the symptoms for it, no heartburn etc, I was just wakening up in the morning with an extreme dry mouth and I had and occasional cracking/fizzle sound coming from my throat. I was prescribed 20g of Omeprazole for it. Just over a month or two now I started feeling a heaviness in my chest, like I had a chest infection, I spoke to the doctor and she recommended upping my …
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Success with Folfirinox?
by Hayley- 16 replies
- 31.1k views
Hi everyone My dad has locally advanced pancreatic cancer with migration around the superior mesenteric artery (SMA) so we were borderline inoperable. We were not eligible for the PRICKLE trial for Abraxane due to the close proximity to the artery and have started Folfirinox. Dads had 6 sessions now and had a CT scan today to see if it has made any change. Due to the harsh nature of this drug the Oxiliplatin was modified to 80% which made the last 4 sessions of chemo much more bearable for him in terms of fatigue. I am just wondering whether anyone knows how successful Folfirinox is in terms of stabilising the tumour? how much progress we should expect? and whether an…
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- 12 replies
- 17.9k views
Hi I have been meaning to join the forum for some time but now feel it is the right time to do so. I am 42 years old with 3 children in primary school. I was diagnosed at the beginning of November 2015 with locally advanced P C. My difficulty with surgery is the involvement of vessels although I am unsure which ones. I had 10 rounds of 5 F U chemo and I have started chemo radiation therapy which is due to end in late July. I found the initial chemo tough with bad side effects but so far the chemo rad is ok. Fortunately, I am currently fit and active with what I hope is still stable disease. Prior to my diagnosis I was in good health so all of this has all come as …
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My journey so far. 1 2
by JED- 33 replies
- 45.2k views
43 Years old and diagnosed with Stage 4 Pancreatic Cancer in December 2015. Oncologist advised it is not operable and spread to Duodenum and Peritoneum. It has been a hell of journey since October when I first developed symptoms and still find it hard to believe. I knew very little about this cancer before being diagnosed and still trying to come to terms with the very bleak outlook of potentially not being around for my family 6 months to a year from from now. My children are too young to be without a Dad . Even though it feels like I’m on death row I’m determined to stay here for as long as possible. I’ve posted my timeline below incase it is of any use to anyone…
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Recently diagnosed, operable 1 2
by Dalow- 30 replies
- 37.3k views
I have been under investigation for the last two months. I had an ultra sound on 24 June, was told I'd have results in two weeks but the next day, my GP rang my doorbell to say a mass had been found on my pancreas, (we were expecting gall bladder problems,) and she had asked for an emergency CT scan but it would probably take two weeks to get an appointment. As I live 6 months in Spain, I called my doctor there who arranged a CT scan for the next day. My daughter and I flew that afternoon to Marbella, had the scan the next day with the results and a cd the same afternoon. The results were encouraging, no spread, no lymph involvement, operable but endoscopy required. I fle…
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- 3 replies
- 12.2k views
I posted this by accident in the patients experience forum. I apologise if it caused anyone any upset. note to self - don't do things at 3am!
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Healing in darkness
by latvis- 4 replies
- 12.7k views
Subject: adjuvant therapy for tumor in body of pancreas works well- but now we are facing episode 2... Oct 1. 2015 62 y. old Caucasian male complaints about jaundice. Total bilirubin was 217, GGT- 658. Oct-Nov 2015 Doctors placed stent in bile duct. CA 19-9 value is 120 U/ml. No pains. Dec. 22, 2015 Diagnosis via operation- inoperable tumor between the body and tail of pancreas with metastasis in abdomen. Initial tumor- perhaps in Gallbladder. CT reading has been confirmed in Germany. Jan, 2016 Patient starts to gradually use all possible non-in…
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Not diagnosed but worried!!
by Doofers- 4 replies
- 19.6k views
I need some help and advice please. I started with loose motions some 7 months or so ago, last Nov. My little girl was having major health issues and I simply put it down to worry over her. However, my motions have remained very loose still to this day. Pardon the graphic description but I would describe it as like weetabix once soggy! Do not get formed stools anymore. I initially went to GP with some abscess on the breasts and then skin rashes. I been on all kinds of antibiotics but to no avail. I then noticed my legs etc were getting thin and changing shape. I have lost weight in past during divorce but nothing on this scale. I seem to have lost muscle as my ent…
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This is my first post on this forum, so a little background by way of introduction. I am a 59 year old GP and was winding down to, (at least in my opinion), a well earned retirement. My wife and I left for a skiing holiday in Canada on 4th February and as far as I was concerned all was well. Whilst away I quickly began to have symptoms of mild diarrhoea, dark urine, passed off initially as exercise related and 8 days into the holiday I began to look yellow. I made arrangements to return to the UK. We all tend to think the worst and painless jaundice has an ominous reputation, I suspected pancreatic carcinoma from the start, though my surgeon initially thought gall sto…
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Worried and Unsure
by Roni35- 8 replies
- 17.9k views
Hello my name is Roni, I'm 35 and I live in Scotland. I was wondering if someone could help me please. For the past few weeks I've had a lot of stress and these last two weeks I've had a mixture of diarrhea and loose stools, these stools have been yellow. Then I had a "normal" brown stool at the weekend followed by the next day a yellow stool with a bit of dark stool on the side (sorry for the tmi), then that afternoon I had diarrhea. My appetite had gone down and I lost about 9lbs as I was barely eating while I was stressed. I've had discomfort in my upper middle abdomen, then slight pains on my left and right sides, both shoulder blades and some twinges in my mid left b…
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metal stent
by MRT160549- 1 reply
- 11.4k views
Has anyone any experience of a blocked metal stent. Biliary stent? (with sludge). What can be done to unblock it please?
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It's back! 1 2
by Pete12- 29 replies
- 30.3k views
It's been some time since my last post, as things just seemed to'chug along'. But to recap.I had a Whipple procedure on 6th June 2014,and things went fairly well apart from a couple of infections. Things gradually improved until the middle of November last year, when I was admitted to hospital suffering severe pain. This turned out to be another infection, this time on my Pancreas. This seemed to be successfully treated with intravenous antibiotics. However, several weeks later the pain gradually returned, but was just attributed to pain from scarring on my Pancreas, I was put on Zomorph slow release capsules to relieve the pain. The pain increased, and I was given a furt…
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NanoKnife
by Hobbs- 1 reply
- 11.9k views
Dear Friends, My mother has clear symptoms of Pancreatic Cancer (vomiting, jaundice, no appetite etc, pain in stomach). They even found some lesion on her pancreas via a CT scan. She did a biopsy last week, and we're expecting the results tomorrow. The consultant surgeon said that he felt she was not fit for surgery to remove the lesion. She is 73, and in fairly good state of health (L3 diabetes only). I have so many questions. I was looking at Proton therapy, but that seems like a dead end. I'm so sorry for starting this new thread, but as you can see, we are desperate and fighting against time. a) Has anyone here tried NanoKnife procedure? Was this an al…
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Proton Therapy for Pancreatic Cancer
by Hobbs- 5 replies
- 16k views
Hello, I'm new to this forum, and this is my 1st post. My mother has had all the symptoms of Pancreatic Cancer, and today we will find out the result of the biopsy. The surgeon here in the UK who examined her initial CT scan said that it could be cancer, but he was not in favour of doing surgery on her. I was a bit sad on hearing that; but the only options remaining are Chemo (not very promising) and Radio. However, we did hear about Proton Therapy, and I'm looking into this now. I'd like to know if anyone here has tried this as a sole procedure in a pancreatic cancer treatment plan? * Have you been cured of the cancer? * What were the side effects? …
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Cheap therapy! 1 2
by Carlinleeds- 30 replies
- 35.1k views
Hi, My name is Carl, I had pancreatic cancer October 2012 and I had the whipples procedure, it has now come back to my kidney. The reason why I am on the forums are. When this first happened I went to look to see If anyone was writing a blog on there experience. I know there are user experience on this site which is great and had really helped me. I started writing my blog quite a bit of time ago, And I really recommend. It's cheap therapy just to write it all down. My blog can be found at: Www.Carldenning.blogspot.co.uk And if you have a blog let me know so I can link it to mine, an hopefully connect them all. Thank you Carl
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- 6 replies
- 12.6k views
Tracy’s Story – Two Years…….and counting! Update on Tracy Friday 20th November 2015 Two years ago today was the worst day in Tracy’s and our family’s life. 20th November 2013 Tracy was diagnosed with Stage 4 pancreatic adenocarcinoma with metastasis to the liver. I am so grateful, truly grateful to share this with you all. It’s been tough for everyone but for Tracy it has been the hardest battle. She has been the one who has had to endure 36 sessions of Folfirinox (a record apparently for anyone especially in the UK), 10 Sessions of GemCap, and a liver ablation. Today Tracy and Chris will travel to London to celebrate Tracy’s 2 year anniversary. One tha…