Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
398 topics in this forum
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Manuka Honey for Chemo
by Ezobor- 2 replies
- 7k views
Hey Guys Just wanted to know if any one had any advice or tips on using Manuka honey whilst on Chemo. My dad is currently on a medical trail drug for Pancreas Cancer and it's made him so ill he can't keep anything down. Whilst in the hospital last weekend another patient said he had been using Manuka honey medical strength for counteracting the effects of Chemo. I just wondered if anyone had used it? If so did it help and what strength did you use? I'm prepared to try anything as it's his first week of this neew drug and hes so ill from it it's gonna make it hard for him to carry on!
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Are these symptoms "normal"
by kwaitang- 15 replies
- 14.8k views
My husband has been diagnosed with inoperable pancreatic cancer that has spread to his lymph nodes. He started initially with severe acid reflux and jaundice. A stent was fitted and the jaundice and billiruben count eventually came down and he is hoping to start chemotherapy and hopefully clinical trials this Thursday. He went to see our GP last week after having symptoms of feeling ill and losing his voice and was diagnosed as having Oral Thrush. He was prescribed NYSTAN oral suspension which seemed to start working fairly quickly. The doctor suggested that he try to not take the OMERPRAZOLE capsules that had initially been prescribed for the acid reflux as he said that …
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My beautiful mum - a timeline
by Dfarmer- 6 replies
- 14k views
If, like me, you want to know what’s going to happen to someone with pancreatic cancer, then read on. I will try to be as honest as possible and give dates as accurately as I can. Of course all pancreatic cancer patients are different and as some background my mum’s symptoms were probably affected by the location of the tumour – in the tail. So here goes… July 2012 Mum referred for endoscopy and colonoscopy due to unexplained anaemia. All clear 9how I wish we’d pushed for furthertests). September - October 2012 Mum visited GP a few times with back pain. Put down to muscle pain and general wear and tear. November 2012 Mum visited GP due to lack of appetite and l…
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This is it
by Dfarmer- 13 replies
- 9.5k views
Mum has been in hospice for a week now. She went in to have ascites drained, which was 8 litres. They've then been trying to get her pain under control. I got back from holiday last night so haven't been to see her yet. We did FaceTime a few times while I was away and I saw a definite deterioration. My dad said that she has gone downhill very quickly. I am just passing the time before I go to see her. Although we've known this was coming it's still so hard. I feel guilty that I went away and she has deteriorated so much. She was ok when I left and now she's not really with it. Does anyone have any advice on how to explain what is happening to my 5and 2 year olds?
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Scan results and treatment change
by washingtonmike- 4 replies
- 6.3k views
Greetings All: Got the final results from the latest ct-scan and met with my oncologist yesterday to discuss and plan. CA19-9 markers are 6830, 2505, 1382, and 623 respectively. The single met tumor no longer appears on the scan and we consider it taken care of by the Falfurinox chemo. This after 4 treatments of Falfurinox and 1 treatment of Falfurinol. The primary pancreatic tumor remains unchanged to this point and my oncologist suggests that we change the treatment protocol to Gemcitibine and Erlotinib (Gemzar and Tarceva). This will make a huge change in therapy going from a 52-53 hour biweekly treatment to a 2-hour weekly treatment. I readily agreed to…
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6 months post op
by Sueba- 7 replies
- 6.9k views
Hi all I have been following everyone's stories online and thought I'd just update on how my husband is getting on. Amazingly enough yesterday was 6 months since his whipples and I have to say he is looking good!Digestion will always be an issue but we now know to avoid fatty meats or pay for it the next day!!hes getting to grips with his diabetes,neither of us realised how blood sugars seem to be affected by everything!hot weather,a cold,stress,the obvious-sneaky piece of cake!!! Tomorrow will be his 3 month scan,3 months since his adjuvant chemo and then the wait for results.......... In the meantime Mick and his football team have decided to do a 20 mile pub challe…
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New lab results
by washingtonmike- 5 replies
- 7.6k views
Hi folks: I got a prelim ct-scan result from my oncy's partner today when I went in for a PICC dressing change. We did the scan last Friday and my oncologist is on vacation for the next couple of weeks. In the meantime I'm on chemo break for more than a week now after 5 treatments of Folfirinox. Lab says metastasized tumor no longer appears on scan. Doc says consider it gone. The primary site on my pancreas remains and radiologist offers these comments: "Pancreatic tail malignant mass is stable in size. There is tumor encasement of the celiac bifurcation, splenic artery, and splenic vein. There is tumor abutment on the superior mesenteric artery. No evidence of meta…
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not again!!!
by scoobymandy- 1 reply
- 4.5k views
I lost my husband on the 19th of June to pancreatic cancer and now just found out that my dad after being pancreatic cancer free after having the whipples procedure has just been told he has the cancer back and chemo is the only thing he can have but he only has months to live. I lost my brother suddenly last October, lost my husband to this vile disease in June and now my dad why just why I have kids and they having grieved properly over there dad and now we love the nightmare again
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New number and change in regimen.
by washingtonmike- 3 replies
- 4.9k views
Greetings all: Finished treatment #5 today and my CA19-9 marker was down to 1382 from 2505 at treatment #4. The dysarthria went away with the drug so that's out of the regimen for now and he may substitute gemcitabine at a later date. Cheers, Mike
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A little celebration...
by Cathy- 5 replies
- 6k views
... Thought I'd do a quick post now as we are about to head out. Have just got back from the oncologist who is very pleased with how Jonathan is doing. His tumour marker seems to have plummeted 90% since his final chemo where it had been stable for a while from a massive 90% reduction from its highest (tho his finger tingling has got worse - it's almost as if he's been given an extra sneaky chemo without knowing). He has also put on 4kg since his last visit - totalling a whopping 8kg total since chemo stopped. I suspect a good 7kg of that is Mythos related.... (ahem). He's going on a diet he says. So our next thing is a scan at the beginning of Sept and ou…
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Nosebleeds?
by washingtonmike- 4 replies
- 12.3k views
Greetings all: Had a new problem two days ago, was walking down the street and got a sudden and rather generous nosebleed. Nothing to provoke it that I know of and no advance warning. On the humorous side I made a dash for the nearest wc, which was in a restaurant, only to find out the paper towel dispenser had been replaced by an electric blower and there was no tp as well AND I was sans handkerchief. But, I made it back to the car and paper supplies I had stashed there. It subsided with packing and instructions from the doctor. One recurrence yesterday of short duration and, because I made a gentle blow to see if anything needed to come out, I probably started…
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What now???
by Dfarmer- 9 replies
- 11.3k views
Well we've been to see the oncologist today and Mum is going to have Cycle 6 of Gemcitibine. Once she has had this she isn't going to have anymore... When we first saw the dr in january he had said that there would be 6 cycles (and if I'm honest I didn't think we'd get to this point). She had a ct scan after cycle 3 and it showed that the pancreatic tumour had grown slightly, the liver tumours 2 had grown slightly, some had gone and some were new. However, the dr wanted to continue with chemo as mum is so well and her tumour markers have come down from 90000 to 2000 and that although there is growth there was a 6 week gap between the first ct scan and the start of tre…
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Update on my husband
by Sueba- 24 replies
- 18.6k views
Hi all Although I have been reading posts on this forum I have not recently updated people on my husbands situation,we have basically lived in a bit of a whirlwind!! As a quick background, my husband age 42 yrs old was diagnosed with advanced inoperable pancreatic cancer on oct 2012, leaving our whole family devastated (we have 3 boys). He started on chemo in November, Folfrinox, he had 6 cycles then a scan in January. Not quite the results we'd wanted but the tumour although hadn't shrunk, hadn't grown either and was still contained. The plan was to have a short break then start chemo radiotherapy. I had already scoured the Internet for places that may operate on ino…
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New numbers
by washingtonmike- 4 replies
- 6k views
Hi All and hope everyone is well and in good spirits. I just finished up inpatient chemo #4 and now doing the outpatient thing with the portable pump. Lab results this pre-treatment were encouraging: WBCS 6/6/13 4.2K/uL, 6/24/13 9.4K/uL, 7/9/13 13.2K/ul (high) RBCS 6/6/13 3.56K/ul, 6/24/13 3.89K/uL, 7/9/13 3.97K/ul (low) Hemoglobin 6/6/13 10.6gm/dl 6/24/13 11.5gm/dl, 7/9/13 11.6gm/dl (low) Hematocrit 6/6/13 32% 6/24/13 35%, 7/9/13 35% (low) Neutrophils 6/6/13 2.0K/uL 6/24/13 7.0K/uL, 7/9/13 10.4K/uL (high) Glucose 6/24/13 102mg/dL 7/9/13 134mg/dL (high) CA 19-9 Tumor marker 6/24/13 6830, 7/9/13 2505U/mL (high) Oncologist says, based on CA 19-9, chemo is w…
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New Gent
by washingtonmike- 3 replies
- 6.5k views
Good day All: I'm writing from the USA and was diagnosed with pancan the 22nd of May. We started the Falfurinol protocol that same day and I have now had three treatments. I'm in my free week between treatments and doing fairly well. I have one met located in my omentum (lower left abdomen) and am curious that I'm not finding other folks with tumors in this area. Is it fairly rare then? On treatment day I have about 4 hours in the outpatient center for the first two or three infusions and then I take the 5FU over the next 46 hours via a portable pump and a PICC line. And, finally, after all that I have an injection of Neulasta and my WBC at the last testing was 9.4K/u…
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- 2 replies
- 5.4k views
Hi all - my mum has had a duodenum stent fitted. She is now eating very little as she is worried about getting anything stuck in the stent. I was hoping/wondering if anyone has experience of this and any suggestions towards a suitable diet would be most welcome. Any advice would be very much appreciated. Dom.
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very new to this - advice?
by allietalker- 16 replies
- 12.9k views
Hi, my name is allie I'm 19 and in university. My family and I found out 3 weeks ago that my beautiful nannie has pancreatic cancer. Unfortunately it is too advanced and she is not eligible for any treatment/chemo. We have been given a few months. She is my best friend and I'm struggling to think of life without her. I've never known anyone with cancer before, and I'm hoping that there are people here who can maybe explain things to me or just talk... Xx
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My mum
by Dfarmer- 22 replies
- 17.4k views
Hi I have spent a long time reading many of your posts and have finally decided to share ours... My mum was diagnised on 27th December following a CT scan 2 weeks before that had been requested following a weight loss of 1 stone, loss of appetite and continued unexplained anaemia (even though she was taking iron tablets). My mum had had the call recalling her to the hospital on 21st December, so our Christmas was one filled with worry as we all knew it wasn't going to be good news. The unexplained anaemia was investigated in July with an endoscopy and colonoscopy and the diagnosis was piles!!! Looking back now mum did say she had been having some back pain for a few …
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Some very good news
by Catherine- 7 replies
- 7.6k views
Hello everyone, I thought I'd share our good news. My mum saw the oncologist today after her first lot of chemo. She's had 8 sessions of cisplatin and gemicitabine. To quote the oncologist her bloods are good, and her scan was good. There's been no growth and no spread, possibly some shrinkage. My mum was offered 3 treatment options, do nothing, carry on with the chemo or to have chemo and radio together. Surgery was also back on the table as an option, though the oncologist was most positive that he could annialate the tumer and that this may not be necessary. His words we 'we are looking at long term control'. We are all delighted, it's the best possible news we cou…
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An introduction
by Cathy- 8 replies
- 8.1k views
I have been following some of the threads on here for a little while and have just posted for the first time on another thread (Kate's) so thought I'd introduce myself and say hullo. My partner, Jonathan, was diagnosed with advanced PC just before Christmas 2012. Until then he had been having some low level pain (since the Autumn) but was controlling this with paracetamol. After being referred to a consultant for tests, a scan revealed cancer on the pancreas that had spread to the liver, lymph nodes and abdomen. The consultant couldn't believe it as he looked so well, his blood tests had been fine, stool samples fine and he was a healthy weight. He is a fit, strappi…
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Hi. My lovely fiance is currently on a gastro ward in hospital after dehydrating due to constant vomiting. Antiemetic meds slowed it down at home but not enough. She was diagnosed with PC with secondary to the liver 2 weeks ago.One of the tumours is blocking the duodenum. Her gastro consultant is trying to get a gastric bypass op done before she starves to death. He wants to build up her strength so that the oncologist can have the option of administering chemo. There is no sign of a bed being available at the moment for the op (she needs to be transferred from the current hospital). She has been on this ward for 5 days. They introduced a NG tube 2 days ago to suck the st…
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Mets after Whipple
by ujho01- 2 replies
- 6.1k views
I have been reading posts for a while now but this is the first time I have posted myself. My husband David (54) was diagnosed with PC on 10 July 2012. He had a successful Whipples procedure, tumor involved portal vein which was also dealt with successfully. 3 lymph nodes tested positive too. In September he had chemoradio (5FU pump and radiation every day for 25 days). After that he started on Gemcitabine and a daily Tarceva tablet. He had been feeling pretty good and was even working part time. He's had 17 weeks of treatment with 3 breaks but it was on on first week of this last break that he had some bloating in his stomach. Our oncologist suggested we wait and…
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My Father
by sschemering- 16 replies
- 13.7k views
My 76 year old father has been diagnosed with pancreatic cancer and is scheduled for the Whipple surgery today. My father's symptoms have been manifesting themselves over the last couple of years. Firstly, there was the dramatic weight loss, depression and back ache and more recently he developed jaundice. He lives in the states and fortunately is in the 20% where the surgery can be done. He is being cared for by my step-mum, who is not in the best of health herself. I was just wondering if anyone had any helpful tips and suggestions as to how to cope with the aftermath. I know that his recovery cannot be predicted as it all depends on the individual, but one of my major …
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my husband
by Juniper- 7 replies
- 7k views
Hi My husband who is 55, was diagnosed with stage 4 pancreatic cancer as primary and secondary liver cancer at the end of Jan 2013, an op was not an option, chemo would be given, he was home from hospital 2 weeks when he was jaundiced and had to readmitted to get a stent in to drain the bile, chemo still has not started and he has been back home for the past 2 weeks. He is now having problems eating, no appetite, was in a lot of pain in his back but that seems to have lessened, going to hospital on Thursday so hopefully will hear if chemo going to get started. As like some of the other posts he was told that it was inoperable and palliative care would be offered when h…
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Mum
by Peadie- 9 replies
- 8.3k views
Hi, I’ve been reading people’s posts and have plucked up the courage to ask some of the questions that I can’t ask my Dad.. My mum was diagnosed with PC over 3 years ago! She went on a clinical trial and out-lived all expectations.. she had to have chemo tablets every day, and have injections at hospital every week, but wow! It was worth it. She even started playing tennis again! However, in December she started to vomit lots and feel unwell. She had some tests, and my Dad told me that it had spread to her bowel. She was supposed to start chemo a few weeks ago, but she and the docs have agreed that she won’t proceed, because it will be very invasive, and would …