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
-
Sore Mouth
by Muzzy64- 2 replies
- 6.4k views
On 4th Folfirinox cycle. Experiencing very sore mouth, finding it painful to swallow, any ideas about how I can get any relief?
-
Post whipples back pain
by Rachelb148- 6 replies
- 13.3k views
Hi everyone I'm new to the board, having had my whipples procedure 12 days ago. I came home two days ago and am generally doing ok I think, although I do feel as though as I have hit by a train. However, the thing I'm really struggling with is constant back pain. I have had this since surgery with no sign of improvement and between the back pain, abdominal tenderness and regular nausea I'm hardly getting any sleep. Do these symptoms sound familiar to anyone who had their whipple fairly recently? Great to see such a supportive and informative community, I'm looking forward to reading more posts and helping where I can. Thanks Rachel
-
Do I need so much sleep ??
by Lels- 5 replies
- 7.5k views
Morning Everyone, I was dx 1 year ago stage 4 PC. I stopped all chemo treatment in Nov. last year, chosing to have quality of life over quantity. Over the last week I have been sleeping on and off all day and night. I sleep for 1 - 2 hours, but never wake refreshed and I am dozing off again an hour later. I have tried keeping myself awake, but it doesn't change anything. I just wondered if anyone has had any experience of this ?? Any advice would be appreciated. Thank you Lesley x
-
Just diagnosed
by Muzzy64- 12 replies
- 11.5k views
My name is Peter, I'm a 49 year old husband and father of 4. Also a qualified nurse working in London ( off sick at moment ) What seems like a lifetime ago, probably about 6-8 weeks developed pain in right upper abdo. Everyone assumed gallstones. To cut a long story short after Ultrasound I was told it was probably fatty liver. 3 weeks later I have a diagnosis of small 2cms pancreatic cancer with a few mets in liver. My Dad died of the same in 2003. He was far worse than me physically when diagnosed, was given 3 months and survived 2 years. He was an expat in Spain and was given many courses of Gemcitabine I believe. I had NHL in 2004 and was given a chemo treatment c…
-
Picc line and traveling
by Carl101- 8 replies
- 11.8k views
Hello Am I able to travel abroad with a picc line? Thank you Carl
-
hi everyone. Im glad to have joined the forum, it seems very supportive. I started in october 2010 with stomach pains going into my back...lately having nausea and pains have become constant, worse when eat or lay down. Ive had a battery of tests at my local hospital. ultrasound showed dilated ducts ct scan showed suspected ipmn in main duct mrcp showed same plus 2 laporoscopes and finally eus at a neraby town. after each test result, my local upper gi mdt had a meeting to decide what the likely problem is and then brought me back to tell me . they spent time trying to disprove the tumour in head of pancreas and looking at what else it might be, such as pancre…
-
- 5 replies
- 8.5k views
I have just been diagnosed with NETs on my Pancreas head and in my liver. Here is my experience so far: Dom's Diary - http://domtravellog.blogspot.co.uk/
-
My Story
by Patience- 8 replies
- 9.9k views
In November 2013, I was admitted to the [Hospital name removed as per forum Guidelines -moderator], showing symptoms of jaundice. A scan revealed a blockage of the bile duct. Four days later, I underwent surgery to investigate and clear the blockage. The surgery revealed a tumour at the head of the pancreas, which was deemed too dangerous to remove by a Whipple’s procedure. Analysis showed the tumour to be malignant. I was diagnosed with inoperable pancreatic cancer and it was predicted that I would not survive more than a year. I transferred my care to the [Hospital Names Removed as per Forum Guidelines -Moderator] and, approximately one month after surgery, I began…
-
new regime
by LindaH- 23 replies
- 19.1k views
I went to talk yesterday - I say talk, but I feel so low at the moment I couldn't help but break down crying. I went to see my Oncologist yesterday with the main focus being on the injection I had last Thursday which I didn't feel has worked to bring the pain under control as the pain is still there. Celiac Nerve Block. Looking through my notes he could see that the injection had worked, in-so-much-as they severed the nerve in question, but unfortunately the pain I am now experiencing is all down to the cancer, which he thought would happen. The cancer has apparently become active again in my liver which he feels is where the tumour is starting to spread more rap…
-
Just diagnosed post whipples
by Sharon m- 6 replies
- 8.8k views
Hi, I have just had the whipple procedure three weeks ago for a suspected tumour in my bile duct, this turned out to be a tumour in the head of my pancreas which had caused the obstruction. The doctor said everything else was clear other than one lymph node which was directly involved. The letter I had said the pancreas showed changes but no other lesions felt. I have no idea what this means,I had a severe bout of pancreatitis after a ERCP. I'm'm not sure if this would account for the said changes? I was a fit 45 year old before this but in hindsight had the symptoms for a while including a bout of depression, indigestion and weight loss, as with most of what I have …
-
Sunshine is the best medicine
by cestrian- 11 replies
- 11.4k views
Hi All AN all too brief long weekend in the sun but boy has it lifted my spirits! I've been reading a bit about the physical benefits of the resultant Vitamin D boost and am sure this is spot on. I am now looking at improving my diet by reducing refined carbs, sugars and upping lean protein, veg, good oils etc. Obviously will need to keep an eye on my weight though it is nowhere near critical at 11 stone 11 pounds stripped!! I am still concerned about whether cancer cells really do feed on glucose. Anyone got any thoughts on diets as there seem to be so many cranky topics on the interweb! Love and Peace Mike
-
- 3 replies
- 8.7k views
Hi Everyone. I had the Nerve Block injection on Thursday, the details I will skip over, but it wasn't pleasant. I nearly collapsed when I received the letter from the hospital which said I will be taking the injection via a tube down my throat.....enough said there. The doctor was very kind and tried to be as gentle as he could, but the injection still took about 30 minutes. I wasn't anaesthetised just sedated.....enough said about that too. When I came around from the sedation the doctor came to speak to me, but you know what it's like, you simply cannot take in what they are saying, though I'm pretty sure he said all went well. He also said the pain would take …
-
C-19 gone up to 90
by Carlinleeds- 4 replies
- 8k views
Hi There, I had my whipples a year in Oct and my CA-19 has gone up to 90, The doctor is waiting a couple of week for another blood test and scan. He as said there is a small chance that it may be a blip? Anyone have any info please Thank you Carl
-
- 13 replies
- 11.7k views
Goodness I cannot even begin to explain to you how much pain I was in last Saturday, Sunday and Monday. The pain in my back is constant, it's very much like a noise that would be in the background, always there, but on Saturday morning it suddenly became much worse though I do not know why. I didn't do anything to trigger it, it was just excruciatingly bad. I took my Morphine, but unfortunately the adverse affect of taking the Morphine is that it is upsetting my stomach, even though I always make sure I take it with food. So Saturday I just stayed in bed all day and tried to sleep the pain away. Even though I had slept all day, after I'd tried to eat something for …
-
Folfirinox or Capecitabine ?
by LindaH- 8 replies
- 10.5k views
Hi, I went to xx on Thursday and was told by their team that I may need some more Chemo treatment in a couple of months or so. It came out of the blue as my Oncologist who has treated me from the beginning and who actually knows me personally, not just read about me five minutes before in my notes, well he did not mentioned needing more Chemo when I saw him last Tuesday....but it's a long story so I won't go into it. What I wanted to know was which would be the best route to take, either Folfirinox or Capecitabine? Capecitabine would be administered in tablet form so I presume I would just take it at home, were as Folfirinox I also presume would be administered b…
-
New to the forum
by RyanH13- 6 replies
- 9k views
Hello everyone, My name is Ryan. I have been having issues with pain in my abdomen for quite some times now (over 5 years) and was diagnosed with ulcers, acid reflux, IBS, ect. and was given treatment for all of these things, which never fully fixed my issues, I just dealt with it. Recently I have been having odd pains in my upper abdomen on my left side, directly under my ribcage, just to the left of the pit of my stomach. So about a month ago I went to see my doctor and he was sure this wasn't just regular ulcer pain (as I have been given treatments for ulcers several times and they keep coming back through no fault of my own) and decided to send me to my GI surgeon…
-
could I get some advice?
by mark.c- 5 replies
- 8.2k views
For the last 2-3 months I have not had any abdominal pain's but prior I would get them twice a month. I started having the cramp's about 3 years ago. Will the cramps come and go or will they be persistent? The pain I experience lasts most of the night but sometimes I get it during the day. I feel so uncomfortable lying on my back and I have to burp to release trapped air. Do these symptoms sound familiar as I have been told by the doctor it is IBS but I can't link any food products to it and I am under some form of stress at times. If anyone could give me their opinion I would appreciate it alot. I am nearly 40 so I am not sure if that has any bearing? Thankyou in a…
-
New to forum
by Janeystu14- 5 replies
- 8.4k views
Hi all This is my first time on this forum, I was diagnosed in May after being ill for several months prior and being admitted an re admitted to hospital . It's been a rough ride having five stents fitted , really bad jaundice and a whipples procedure abandoned then had lost nearly 3 stone in weight and had the long wait to build myself back up ready for chemo, after 9 weeks they agreed to start so in July I started every other week on Folfirinox and was told I needed 24 sessions. I managed 6 with great tolerance, minimal side effects, but my pain has got worse so they decided to scan after 5 . Today I was given more bad news from my oncologist that the chemo was not …
-
Post Whipples complications...
by Tolliedee- 6 replies
- 9.2k views
Hi, this is my first post despite that I have been reading all your information for months! My husband has had an elective Whipples for a pre malignant lesion on his pancreas. This was found as a result of a double hernia (his first stay in hospital ever at 57!) followed two weeks later by cholecystitis (which was removed) followed two weeks later by a massive jaundice and pancreatitis after which he was scanned +++ and on one of these scans they saw the lesion. This was monitored until they finally decided it was a risk to leave it and suggested the Whipples to give us the chance of NOT having that dreadfull diagnosis in the future! Genius! (I am eternal grateful that w…
-
SYMPTOMS
by Gillyanna- 13 replies
- 21.3k views
Hi, I have just been diagnosed with Pancreatic Cancer, my only symptoms at the moment is a tumour on the head of my pancreas and feeling nauseas, though early on I suffered severe indigestion across my chest. I have asked for the scan to be delayed as we are going away for a few days, and then after the scan I shall see my oncologist. Everyone tells me how well I look, and quite frankly, apart from the nauseas, I feel ok. Occasionally,I have been getting pain in my left side near the lower ribs and my stomach, but am not sure if it's from my pancreas or not as I have multiple sclerosis and also muscular skeleton. I was wondering if this was normal for Pancreatic cancer, o…
-
Neuralgia
by LindaH- 4 replies
- 7.5k views
Is anyone else suffering back pain because of neuralgia I have been given some tablets for the pain called Pregabaline & Amitriptyline. This last one is only to be taken at night, so I did last night and this morning at 9 am I could not wake up. I finally came round at about 4 pm this evening. I have also taken 3 of the Pregabaline (over two days) and just after I had some soup because I did not feel hungry at all, well I brought the whole lot back. The leaflet says 1 in 100 will vomit, but goodness the tablets have not had chance to get in my system yet. Please can anyone help? Linda x
-
intestinal problems
by liz99- 2 replies
- 6.9k views
Hi, My husband was diagnoses with pancreatic cancer with liver mets in April. We have had a difficult journey so far. But we finally managed to get the back pain under control. However over last few weeks he has been having pains when eating and using the toilet. Recently he spent a week in hospital with an infection, after the admission the oncology team reassessed his scan - that he had had a few weeks earlier (not sure why this did not occur when an inpatient). Anyway it appears that the tumour is pressing on a vein which is stopping the blood supply to the intensive, this led to inflammation of the colon. His chemo was stopped for a while - but has restarted. …
-
side effects creon
by freezer34- 6 replies
- 27.6k views
I posted a new post last week on this subject but I can't find the posts or the replies so I will start again.I stated that I was diagnosed with pancreatic cancer that had spread to my liver and I was prescribed creon 40k and morphine plus steroids to give me an appetite.I was told to take 2 capsules with a main meal and 1 with a snack.I had attacks of diarrhoea so I decided to vary the doses by at first taking no creon whereupon I got agnising stomach cramps.Realising the importance of enzymes I started taking the creon again at the usual dosage.I got a few attacks of diarrhoea but nothing compares to what happened on Thursday 22/8.At 6pm I got an attack of diarrhoea tha…
-
Progress Report, Treatment #9
by washingtonmike- 7 replies
- 9k views
Greetings All: I've just finished up treatment #4 on Gemcitabine/Tarceva, this after 5 treatments of Folfirinol/ox. Diagnosed May 24th. CA19-9 levels now at 67 and continuing to drop from 6,830 on 6 June. WBC count at 2.2L, Platelets at 185, Neutrophils 0.8L. I'm to start receiving Neupogen injections (weekly) tomorrow. Appetite is good and eating regularly. Pain is minimal and usually one to two Vicodin daily controls it. Energy level is a bit on the low side, especially after treatment, and I can't yet have a go-at-it all day long but I'm up and active for most of the day and evening now. Experienced an upper-body rash a couple of weeks ago which is no…
-
Disappionted
by LindaH- 5 replies
- 8.1k views
Hi, I went to speak with my Oncologist last night and was disappointed as there hadn't been any reduction to the tumour. Okay, it's stayed the same and I know that is a result....as it hasn't flared-up again or become larger, but I guess I wanted a miracle that just isn't going to happen. He is pleased with the way things are going and he is going to write to {name removed - moderator} again for me to ask if there are any trials or any new medicines, so I know he is going to take care of me, it's just that I feel like I'm staring into the big black hole and waiting to fall in, but I don't know when it will happen. I know really in my heart of hearts, compared wit…