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).
279 topics in this forum
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Recently Diagnosed
by Rosemary124- 16 replies
- 17.2k views
Hello Everyone I am new to this forum and was diagnosed with a large cystic neoplasm with localised lymph node involvement two weeks ago. I am due to have a radical left pancreatectomy on the 6th of November, although I have not had my date confirmed yet. The surgery will be open due to the size of the tumour and they will also remove my spleen. I went to the GP after experiencing dizziness and vertigo for over two weeks. I had been feeling unwell and losing weight for about a year but put it down to my stressful job and had been diagnosed with Duodenitis and a hiatus hernia 4 years ago, so I ignored the pain and indigestion I never imagined it would be anything …
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Tired/sore eyes
by RoyBoy- 7 replies
- 10.1k views
Hi, I have either tired or sore eyes. I am on Cycle 5 of chemo- Gemcitabine. I wondered if anyone else had suffered this ? It is not a major issue and it is usually worse in the late evening when I assume I must be tired and I go to bed. I could be more tired than I realise or is it my chemo ?
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Trapped wind after eating.
by Go green sue- 2 replies
- 8.1k views
Hi, I had the body and tail of my pancreas removed 7 weeks ago. Apart from an infected haematoma for which I still have a drain I am doing quite well. My appetite has returned and I seem to have got to grips with my creon dose. However, I am ok after breakfast but as the day wears on when I eat I find that afterwards I get pain in my chest and through to my back which feels like trapped wind and it can last for quite a while. Has anyone else experienced this and if so how do you deal with it. Love to everybody on the site Sue xx
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Blood transfusion
by RoyBoy- 5 replies
- 8.6k views
Hi, Sorry to bore you all again with my problems, but I will. No one else listens ! I have been struggling with my first 3 months of chemo - Gemcitabine. My haemaglobin levels have been low throughout and the wonderful support nurses on here, Jeni, have been telling me I need a blood transfusion. I did ask but my Dr's said not unless I go below 90. Well I went 87 the other week and got a transfusion (2 units). Oh boy do I feel good now. I went for chemo the other Monday and also this Monday and have been fine. I am due it next Monday and if I have that it will be the first time I have managed the course of 3. It is not rocket science, is it ?
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Laparoscopic distal pancreatectomy and splenectomy
by Go green sue- 18 replies
- 18.5k views
I have been monitored for 2 years for IPMT's in the pancreas. My recent scan has shown growth and changes in the tumours. So on 16th August I am having a laparoscopic distal pancreatectomy - hopefully the disease hasn't spread in which case he will take the whole pancreas instead of half. Has anyone else had a laparoscopic distal done and if so what are the post op recovery time like. I am so scared. My mum died of pancreatic cancer at 62 and so did her dad. Although things weren't as advanced medically then. I am 60 at Christmas. Best wishes to other members Sue
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Weight loss
by RoyBoy- 8 replies
- 9.5k views
Hi, I had my Whipples Op. in April 14 and my weight has continued to drop from 82kg (pre-op) to 71kg to date. Thankfully I spoke to the Support Team on here and Jeni has provided a list of information to help with this. She has told me to have 5-6 smaller meals a day. To consider specialist build up foods like soups, milkshakes etc. To increase my Creon intake and double it. At breakfast I would take a 25000 capsule with my cereal and then an hour later just eat my toast. She has told me to increase my capsule size and that a capsule only lasts 20 minutes. I now take another capsule before I eat my toast. I am back on normal milk and butter ( was previously on 1% milk …
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One lady's bucket list
by washingtonmike- 11 replies
- 11k views
Found this article on BBC.com this morning. A good read. Enjoy. http://www.bbc.com/travel/feature/20140803-the-bloom-of-cancer/1
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Chemo- 2nd cycle-2nd week- Gemcitabine
by RoyBoy- 3 replies
- 7.1k views
Hi, I turned up on Monday at my local MacMillan Cancer Centre for 2nd cycle - 2nd Week and they did a blood test. They leave the needle in, test the blood, and proceed with the chemo- Gemcitabine- for 30 mins. I felt a bit queasy during chemo. I got home and in the afternoon began to feel weak and hot and took myself to bed. I later checked my temperature and found I was 38. I phoned the out of hours chemo number and was told to report to A & E. My wife took me and I was admitted and placed on drips of paracetamol, antibiotics, saline and plasma. I had a chest x-ray as I had a mild cough. I was discharged the next afternoon with 5 days of antibiotic tablets.
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Chemo- 2nd cycle
by RoyBoy- 6 replies
- 7.6k views
Hi, I have a query/question. On Wednesday last week I saw the Oncologist at the end of cycle 1 and my blood results that day were 2.8 white blood cells and he said hopefully they will pick up for this Monday. He also said he would prescribe me some injections to take from Day 3 this week to support my immune system. I went for my chemo yesterday and they did not test my blood but gave me chemo straightaway. Is this normal as my daughters have told me off and that I should have asked why they did not test my blood ?
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Black seed Oil
by Muzzy64- 3 replies
- 8.5k views
http://www.sciencedaily.com/releases/2008/05/080519092215.htm Anyone ever used Black seed oil, quite a claim made in this article.
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CA19-9
by Muzzy64- 2 replies
- 8.6k views
My CA19-9 count has gone down from 14,000 to 11,000 in the 4 weeks since changing from Folfirinox to Gemcitabine. Not sure what this means but I suppose it's good news?
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Muzzy64 Update
by Muzzy64- 4 replies
- 7.1k views
As I've already posted on forum had to change from Folfirinox to Gemcitabine due to slight spread of liver mets after round 4 of Folfirinox. Also at the beginning of my treatment ( late March 2014) the consultant decided not to start me on prophylactic anticoagulants and after 3 rounds of treatment this time got a DVT in my PICC line arm. This, despite fact that when I had chemo for Non Hodgkinsons Lymphoma back in 2005 ( yes I've had the double whammy) I did get a very extensive DVT in my right calf. The Pancreatic cancer consultant has admitted that in hindsight he should have used prophylactic sub cut clexane but I find there is no point in getting angry, it works agai…
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Staying positive
by markws- 6 replies
- 8.7k views
Hello, I was diagnosed in July 2013 after becoming jaundiced following a 48-week clinical trial to rid me of the hep c virus that I have lived with asymptomatically for over 30 years. After spending 14 nights in hospital I saw a surgeon at [Name removed - moderator] who recommended chemotherapy to shrink the tumour (it was about 1.5 cm in the head of the pancreas and close to a vein). I had 3 months of folfirinox which I tolerated quite well (I'm an otherwise fit 53-year-old) but although this appeared to stablilise the tumour there was no significant shrinkage. I then went on 5 weeks of oral chemotherapy and radiotherapy. This had a similar result. Finally after …
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Chemo- Gemcitabine
by RoyBoy- 5 replies
- 7.6k views
Hi, Following my successful Whipples procedure in April I had my first chemo treatment, Gemcitabine, last Monday. I duly reported yesterday for my second treatment and they took my bloods to find my white blood cell count was 2.6 - apparently it needs to be at least 3.0 and my other count was 0.5 and that needs to be 1.0. They were unable to give me my chemo and sent me home. They said they will try again next week.I felt fine and was not aware of any problems ?
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And another ones got it 1 2
by wackywacky- 37 replies
- 31.7k views
Hi To you all, been reading for last few weeks since husband been diagnoised with the little B. Brief history, just before Christmas he had acid, still got acid February and over counter stuff not working. Went to Doctors who gave him a months supply of Lansoprazole also did tests for ulcers. Still a niggling ache after a month now and then, went back to doctors who advised finish course and come back in 2weeks if ache still there. Finished course 2 days later all started rushed to A and E. Up to this point only symptom acid fit bloke for 54 does drink and smoke. In hospital 2 weeks were found a blockage, had a duodenum stent put in so food could pass through. All his…
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PC journey from Downunder
by Nelsmum- 16 replies
- 16.3k views
My name is Jane and I live in Australia, born in NZ and spent 34 years in England, 12 years working for the NHS in Telecommunications. We have nothing like this wondeful site here with all its support from fellow sufferers, relatives and nurses. The Cancer Council here has started a project call Forgotten Cancers to raise awareness of cancers like PC, gall bladder, bladder, about 15 of them. I am participting in thus study and I wrote this account for them. Filled in an extensive questionnaire and provided a DNA sample, been interviewed by the local paper so an effort is being made here in Oz. I was officially diagnosed with locally advanced adenocarcinoma of the pancr…
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Simon Hoggart
by cestrian- 8 replies
- 11.8k views
RIP Simon Hoggart, broadcaster and journalist who sadly died yesterday from Pancreatic Cancer after suffering from the disease for some years. Sincere condolences to his friends and family. I was not aware that he was actually suffering from PC and do feel that it is a pity that a high profile victim of PC could not have been something of a figurehead in the fight to publicise the disease and the lack of progress in its diagnosis and treatment. There have been numerous examples of women in particular who have been very courageous in using their own illness to make the public aware of Breast Cancer and other female related cancers. I know that everyone will have their o…
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My tumour
by RoyBoy- 2 replies
- 6.3k views
Hi all, I posted on here a few weeks ago that I had my Whipples op in late April and I am making steady recovery and progress. I walked a mile to my Doctors surgery yesterday and then back home again so I am pleased.I have received my consultants letter where he discusses my tumour that he removed. He says it was 3.5cm in the head of my pancreas and that of the thirteen lymph nodes he removed only one was involved by cancer. He says the tumour should be classified as a pt3 N1 MX. Does anyone know what this means ?
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- 11 replies
- 13.5k views
I'm 49 years of age, have 4 wonderful teenage kids and was diagnosed with inoperable pancreatic cancer (liver mets) in early March 2014 Today 2 weeks after my 4th round of Folfirinox I have been told I'm swapping to the Gemcitabine regime. In reality I have reacted to the Folfirinox very badly indeed. An initial extensive DVT in my picc line arm travelling up to my neck has now become Superior venae cava syndrome due to a blockage of my Venae cava by another blood clot (very debilitating). Plus I have felt like death warmed up for the last month. So the decision was made to change me to 3 weekly Gemcitabine which apparently is far less toxic. Has anyone anything posit…
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- 3 replies
- 6.6k views
My mum was diagnosed today but we have very little info. She has no symptoms, this must be a good thing???
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About this thread - the title here changes to reflect the latest post, but this whole thread starts the week before FOLFIRINOX. At this point the tumour is classed as borderline rescectable, so the expectation is chemo (6 cycles), chemoradiotherapy (5 days p.w for 6 weeks), then, if still feasible, surgery. FYI - Borderline Resectable Tumours and Pre-surgery Chemo and/or Chemo Radiotherapy - The followng study goes into depth with the reponse rates for locally advanced borderline-resectable cancer and pre-surgery chemo and/or chemo radiotherapy. http://annonc.oxfordjournals.org/content/early/2013/07/11/annonc.mdt239.full - You would need to wade through medicalese to …
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- 18 replies
- 15.4k views
Hi I'm new to this forum, I'm 53 have had a whipples last May and the gem-cap until the end of the year. In April this year I had a scan that shows a tumour on my liver. The surgeon will not operate to remove the tumour although it's only 2.5cm, sounds like this is all very common with PC. I have been lucky to get funding for Gem Abraxine as a first line treatment. For a second line if I don't tolerate it Folfox. I have asked if I could have Folfirinox as a first line he said yes but if I don't tolerate it there is nothing else I could have. I asked if I could have the Folfirinox as a back up to Gem Abraxine but he said no. So I just can't make my mind up what t…
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Post Whipples
by RoyBoy- 7 replies
- 8.2k views
Hi, I am new to this forum and I had my Whipples procedure towards the end of April 14 and having read some of the ongoing problems on here I feel a little bit of a fraud posting on here. My procedure went well and I am making steady recovery. I felt I should still post my positive experience to give encouragement and hope to others. I am 60yrs of age. I was discharged after 7 days when I was warned to expect 12 days. They found I am not diabetic and I do not need enzyme tablets to aid digestion. My wound is still weeping slightly in one corner but I am seeing the G.P. nurse for that. I accept that mine was discovered early and surgery went as well as can be expected. The…
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Increase in liver pain.
by Muzzy64- 5 replies
- 8k views
Increase in liver pain after round 4 of Folfirinox . Bit frightened. No other symptoms ie weight loss or jaundice. My diagnosis is 2cm tumour in pancreas and a few liver mets. Frightened this pain could indicate liver mets are getting larger.
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Sore Mouth
by Muzzy64- 2 replies
- 6k views
On 4th Folfirinox cycle. Experiencing very sore mouth, finding it painful to swallow, any ideas about how I can get any relief?