Treatment, symptoms & side effects
A forum to focus on treatment related issues, symptoms and side effects from treatment.
220 topics in this forum
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Pancreatic Cancer UK - Support Line
by Support Team- 0 replies
- 27.2k views
Pancreatic Cancer UK runs a Support Line for anyone affected by pancreatic cancer. Our Support and Information Team can provide specialist support and information on pancreatic cancer. You can contact the service by emailing support@pancreaticcancer.org.uk The Support and Information section of our website also contains information about pancreatic cancer and some real life stories of people affected by pancreatic cancer - visit http://www.pancreaticcancer.org.uk/pcuksupport.htm
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Weight loss
by Helenm- 10 replies
- 8.2k views
Hello, I wondered if anyone had any experiences they could share about countering weight loss. My dad: Is having palliative chemo, folfirinox. He's just had cycle 3. He is insulin dependent diabetic. He has had extremely bad diarrhoea but has had some changes to the chemo for this cycle which seems so far to have stabilised the diarrhoea. Worryingly, he has lost over a stone in a couple of months. But he still has a good appetite, even if he's only managing smaller portions. He's so very tired. He is on the list to be contacted by a dietician. He's not been offered any supplements but the chemotherapist seemed to suggest they would be offered. We have added b…
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General health
by Cheshireboho- 1 follower
- 1 reply
- 1.2k views
Hi , I was diagnosed withPC in November 22, I had a whipple followed by Folforinox for 6 months . All scans bloods good . I still have some pain and have days when I am tired and feel slightly sick . Is this normal? I know I’m lucky to have got this far . I was stage 1b no lymph nodes no metastases.
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- 0 replies
- 800 views
Hi, we are waiting for my mum's biopsy results but everything is pointing out to PC. My mum has been in a severe pain since October, now prescribed 10mg Morphine Sulfate x 2 day, and 10mg Oramorph to be taken as 5ml max 6 times in 24hr. This medicine is not helping, she is in a significant pain, she can only leave home to get more medicine. Can you share your experiences and medicines that helped with pain? Has anyone tried nerve block - A celiac plexus block? Thinking possibly to see if we can pay for it privately, to get it asap. Thank you
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- 1 follower
- 0 replies
- 7.2k views
Hello, all. First post. I was diagnosed with ampullary cancer last year, had the Whipple procedure in June and began chemotherapy in August. Because the cells in my (removed) lymph nodes were of pancreatic rather than biliary type, I've been treated pretty much as if I had pancreatic cancer. After six months of what I'm guessing many of you are very familiar with, this week I'll be having my 12th and final cycle of the FOLFIRINOX regimen. After the customary 10-14 days of feeling yuck, then I'm hoping to gently rebuild my strength and eventually get back to normal. I know these things are different for everyone, but I've been warned that the fatigue can take 3-6 months to…
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Supplements?
by Michaela1- 7 replies
- 19.3k views
Good afternoon all, I hope you are all feeling good.....or at least ok! Well it will be round 2 tomorrow, I am hoping it will be easier than round 1! I am losing weight and am struggling to eat so I feel it is time to start looking at supplement drinks that may help with this that are easy on the stomach. Does anybody have any recommendations of some nice ones that maybe the Dr could prescribe for me please? Michaela
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Are treatment options different if paid for/private?
by AshleyW1011- 0 replies
- 1.1k views
My Dad has been informed that he has 'a type of pancreatic cancer'. We haven't been informed of much more than that, which is extremely frustrating and this constantly feels like a waiting game. In December 2022 by Dad had his usual 6monthly blood test following getting the all clear from testicular cancer 3 years ago. The December blood tests showed that a cancer marker was up. Second blood test showed the same result. CT scan showed a mass near the pancreas. PET Scan that followed showed the mass near the pancreas and a spot on the liver. We were informed at this point they were sure (99.9%) that the mass was not attached to the pancreas. Biopsy was taken on 7th F…
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Primus-001 clinical trial: Comparing Folfox & nab-paclitaxel with Gemcitabine and nab-paclitaxel
by KT1- 1 follower
- 5 replies
- 2.1k views
My mum has been offered the Primus-001 clinical trial. I was just wondering what people’s experience of this trial has been. Thank you.
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What happens now?
by RooBear- 2 replies
- 2.9k views
Hello. I am a first time poster on this forum. My dear mum has advanced, inoperable PC which has spread to her liver and breast. She is five months from diagnosis, bed bound, receiving hospice care at home. Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital). Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day. She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite th…
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- 2 replies
- 2k views
Hello, I realise this is a relatively new trial, but we wondered if there is anyone on here with experiences of being on the defractinib with VS-6766 for pancreatic cancer trial? My Dad started it a couple of weeks ago but already one of the side effects is making him seriously question whether to continue. It would be good for us to talk to anyone who has experienced the trial and its side effects, if there is anyone! We understand there are only 3 hospitals/centres in the country offering the trial for pancreatic cancer and he is the first at the centre he attends.
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Constipation
by Crouchender- 0 replies
- 7.1k views
Hi all. I have advanced PC being treated with gemcitabine & abraxane (following folfirinox, radiotherapy & Wipple in 2019/20). I have feelings of constipation even though I am managing to pass soft stools - it feels like this is going round some sort of impacted poo (amazing how PC makes inhibitions about your guts disappear!). Is this possible & any tips for relief?! Thx
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What happens now?
by RooBear- 4 replies
- 2.4k views
Hello. I am a first time poster on this forum. My dear mum has advanced, inoperable PC which has spread to her liver and breast. She is five months from diagnosis, bed bound, receiving hospice care at home. Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital). Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day. She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite th…
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Treatment/ chemo
by May888- 1 reply
- 2.4k views
My mum (73) had her first oncology appointment yesterday. Didn’t expect this and it has shocked me. So back in mid March my mum had stomach ulcer. Doctors took sample cells from her stomach. At the time we were told there were no results. Found out YESTERDAY the sample of the stomach ulcer contained cancer cells. So not only my mum has PC, it has spread to her liver AND stomach. We asked why has it taken so long to get this information and they said they did not have the results and apologised. I’m disappointed at this, as this should have been communicated sooner when the doctors found out, not wait till my mum had the oncology appointment. My mum had a blood …
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- 3 replies
- 3.1k views
Hi everyone, I’m a newbie to this forum and am posting on behalf of my sister who was diagnosed with stage 2 pancreatic cancer at the end of January 2022. My sister is 58, lives in the USA and is in reasonably good health other than the tumour at the tail of her pancreas. She had a PET scan on 3rd March which showed it had not spread at the time and was measuring 4.6cm x 3.2cm which is a little larger than the original scan in Jan. Her genetic tests have come back showing no mutations that would account for the cancer. Her original treatment plan was for 4 cycles of FOLFIRINOX followed by surgery and then more chemo. She had her first cycle of FOLFIRINOX on 2…
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Tumour markers
by Jess- 3 replies
- 5.4k views
My husbands blood tumour markers have come back normal.. He's just coming to the end of 6 months of chemo after a whipple last August.. Are these markers reliable? As his oncologist said he won't have a scan or anymore treatment... I'm scared to believe it has gone away.. Jess
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Primary pancreatic lymphoma
by HMcG- 3 replies
- 2.8k views
So the story continues! Some of you may have seen my previous posts regarding my Mum who was diagnosed with locally advanced inoperable PC on 21/12/2021. From about Christmas day her jaundice completely disappeared and she started to feel well again, after being essentially bed bound days before. Also her AST and ALT blood tests have greatly reduced and whilst still above normal had dramatically reduced. She had her ERCP with stent yesterday which all went well. The consultant who performed the procedure commented that my Mum's case just isn't adding up. The CT scan shows what he described as a 'very large aggressive looking tumor' measuring 10cm, however my Mum is well a…
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- 20 replies
- 4.5k views
Hi there everybody, My Mum is 64 years old and otherwise fit and healthy. On 21/12/21 (so 3 days ago) was diagnosed with pancreatic cancer, after being admitted to hospital with abdominal pain and deranged liver function tests. The consultant surgeon who gave us the news about my Mum seemed very despondent. He advised the tumour has spread to vessels making Mum inoperable (but has not spread to any other organs). Due to all this happening over Christmas we have to wait until 6th January for Mum's MDT meeting to see if there are any availability treatments. In the meantime she is booked in for an ERCP with sent to help with the jaundice. I have thrown myself in…
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Hair loss with abraxane
by Marta- 3 replies
- 8.1k views
Hi, I am new here. I will start chemo with abraxane inside a clinical trial and although I am very happy to be able to get the treatment, as a woman with a hair that I like I am a bit worried about hair loss. Don't get me wrong, I will get the treatment no matter what but I would like to be prepared. Is is possible that I do not lose all my hair? Does everybody need a wig? Any tips? I would really like to hear experiences about this. Thank you all.
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CBD
by Helenm- 1 reply
- 4.3k views
Does anyone have any experiences of using CBD capsules alongside chemotherapy?
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- 1 reply
- 2.6k views
Hello all, I’m here because my specialist nurse suggested it. 3 years ago I had just my tail removed after an incidental discovery of a cyst with a couple of cells in it. Since then I’ve had continuous problems with pain, nausea, constipation and sugars. Everything I’ve read tells me I’m one of the extremely lucky ones and that I should barely notice any symptoms after this long. But it’s rubbish. My diet is appropriate, I haven’t an idea how much creon I should be taking but I’ve only once in 3 years had diarrhoea. I’m lucky to pass anything twice a week. Does anyone have any anecdotal stories about their post surgical journey? It’s really getting me down
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Creon 25000 effect diminish over time?
by worrier- 7 replies
- 4.4k views
Hi, I had a Whipples Procedure in August 2008 and was put onto Creon 25000 18 months after the operation. In recent weeks I get the impression that the Creon is not as effective as it once was. Does the effectiveness reduce over time? If so should I consult my GP for a referral? It appears that only a consultant can increase or change the prescription. I have 400 capsules per calendar month.
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Jaundice disappeared
by HMcG- 0 replies
- 2.5k views
My Mum was diagnosed 1 week ago with locally advanced PC and we are awaiting an MDT meeting. Whilst she was in hospital last week she was quite jaundiced and the consultant said the tumour was preventing bile draining and booked her in for an ERCP with stent to correct this. She is due to have the op in 3 days. However over the past 2 days the jaundice has completely disappeared. My Mum says her urine is back to a normal colour and she feels like she has much more energy. When I got Mum home I spoke to the GP to get some better pain relief on board and they also prescribed dexamethasone to improve Mum's appetite - could this be a possible reason for the improvement? Or ca…
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NHS funded chemo - who qualifies
by TeniOla- 3 replies
- 2.9k views
Hello, My mother who is 80 was recently diagnosed with pancreatic cancer on the head of the pancreas. It's stage 3 and inoperable due to proximity to vital blood vessels. The Oncologist talked us through 3 chemo plans and their response rates. He recommended my mother takes a combination of 2 chemo drugs for 3 - 6 months, the response rate it 35%. I forgot the names of the drugs and will post an update when I get details. What shocked me was that we were told the chemo treatment is not available on the NHS because there is no metastasis. We have to self fund at potentially up to £4k per month. When I asked why the treatment is not available on the N…
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Loss from diabetes complications
by LisaEdge- 2 replies
- 3.1k views
I am hoping to find others with a similar experience, as we tragically list my uncle recently. The cancer was discovered last November, and he was not offered the whipple. He went through his first round of chemo, but began to find his sugar levels changing and after a blood transfusion in March had mild hypo. He lived alone and luckily we found him. He then began a new chemo in July, but his blood sugar levels were all over the place. He was becoming thin and weak, and the combination of medicines were not helping. He was then put on insulin, but a week later lapsed into a coma over night. He had seizures and passed away with sepsis 4 days later. We are devastated as w…
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A different approach
by jamescotterell- 8 replies
- 11.1k views
Hi all just wanted to let you know about a different approach to PC. I recently lost my step dad melvyn to this evil disease (RIP melv). We was 58 and should have had at least another 20 years. I`d like to help people not to go through what we`ve gone through. I am a geneticist/biochemist and I did everything in my power to give him the best chance. Through this process i realised that there are powerful tools out there that we use in biological research to give people a better chance but they are simply at too much of an early stage for the NHS to have picked them up. We used them... We sequenced part of the genome of his cancer and normal tissue in order to ide…