Treatment & side effects
210 topics in this forum
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Pancreatic Cancer UK - Support Line
by Support Team- 0 replies
- 24.7k 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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- 1 follower
- 3 replies
- 410 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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Supplements?
by Michaela1- 7 replies
- 15.3k 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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Tumour markers
by Jess- 3 replies
- 2.6k 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- 1 follower
- 3 replies
- 669 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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- 1 follower
- 20 replies
- 1.6k 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- 4 replies
- 4.9k 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
- 394 views
Does anyone have any experiences of using CBD capsules alongside chemotherapy?
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- 1 reply
- 398 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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Weight loss
by Helenm- 9 replies
- 3.1k 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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Creon 25000 effect diminish over time?
by worrier- 2 followers
- 7 replies
- 945 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- 1 follower
- 0 replies
- 393 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- 1 follower
- 3 replies
- 868 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- 1 follower
- 2 replies
- 1.1k 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
- 9k 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…
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- 3 replies
- 9.6k views
Hi, I hope this is the right place to post (if not, please do point me in the right direction - this is my first post!). My Mom has Stage IV PC and in terms of NHS care, we are just about to start her 3rd cycle of Folfirinox. Alongside this, we are also working with a very well qualified functional medicine specialist; an oncology clinic in London for use of off-licence meds; and we have a fairly broad complementary plan in place at home. However, we are having some challenges with Mom's NHS oncologist who is completely closed off to considering any options other than standard NHS palliative chemotherapy and that includes being unwilling to even discuss the other t…
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- 2 followers
- 4 replies
- 1.1k views
I have borderline operable pc in the head, and the plan is to do three months of chemo, folfirinox, and then see if the tumour has shrunk enought to do the Whipple procedure. If not, we will try a round of radiation. Tomorrow I go for my port and then start the chemo next week. Up until now I've been super upbeat, surrounding myself with positive thoughts, but today, I'm feeling a bit nervous and scared. It's all starting to feel so very real... I'm wondering if any of you have had folfirinox? What did you experience week 1? Also, I'm having it done at LOC Harley - anyone been there, and if so, what's it like? Th…
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Hair Loss Query
by Nidge15- 0 replies
- 1.2k views
Hi, This is my first post. Good afternoon everybody! I have recently (4 weeks ago) undergone Whipples procedure. Recently I have noticed that the hair on the top of my scalp seems to be coming out in rather higher quantities than I am used to. I have always had a think head of hair, so this is a new development. I have considered the following: 1. Just my biology and a factor of my age (54). However, I have always had thick hair, so this is a bit unusual, especially as my 3 brothers also have thick hair and, although I am the eldest by a couple of years, they don't seem to be suffering from hair loss. 2. A result of the traumatic operation and general stress of…
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Whipple proceedure
by Jess- 1 reply
- 1.7k views
My husband had a whipple done in August.. He constantly complains of tightness and discomfort around his stomach (wound area) the doctors don't seem concerned and say its probably still healing.. He says it feels tight as if it's pulling or stretching.. Just wondering if anyone else has experienced this?.
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Trials and Cannabis oil experience
by lucyjev- 0 replies
- 1.3k views
Hello - sorry 2 questions: The first is about trails for stage 4 (metastatic) as it has spread to the omental and peritoneal areas. Anyone have experience of with good results Cannabis oil - I'm hearing first hand of people stabilising their cancer using this (of course its often impossible to say which one thing is working when people are doing lots of things together) but could anyone share any positive (or negative) experiences with me on this. I've heard that the oil needs to be pure and to be wary fraudsters around this. I've found out about RSO oil but need to be sure I'm not being scammed as think its very expensive. Thank you
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Constant Pain
by Cookie- 1 reply
- 2.8k views
Hi, My husband was diagnosed with PC stage 4 with liver mets in July, he had a bile stent put in and is on round 5 of folfirinox (coping quite well with minimal side effects) the only problem he has and I was wondering if anyone else had had this is increasing bouts of pain in his abdomen. He is taking 90mg of MST twice a day 225mg pregabalin and 20mg amitriptyline plus oramorph for breakthrough pain and this still doesn’t seem to be helping. He is booked in for celiac plexus block but I keep thinking that the pain is maybe something to do with his stent or bowel as he’s always back and forth to the bathroom. Getting any answers from the doctors is frustrating at best…
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- 2 replies
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Hello! Long story, jump to the last paragraph for my question! My father (76) was diagnosed with pancreatic cancer about a year ago. It was localised to the pancreas, no metastases to begin with, but inoperable. He was started on Folfirinox in December of last year. He was spared side effects, only a bit of nausea on treatment day and he was a bit more tired than usual. In all, the portable pump he had to wear for two days was his biggest bother. After (about) 10 treatments he got a bit sensitive to cold. But in all he was lucky. (at least, that's what he has told us and the doctors) He was not so lucky with the effects on the tumour. It continued to grow a littl…
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Folfirinox protocol - 12 or more
by Vasil- 1 reply
- 1.6k views
Dear friends, my father has inoperable metastatic PDAC and is on FOLFIRINOX. He has been scheduled for 12 cycles total. In the Internet most websites say that 12 cycles is the maximum number of treatments. But what follows next? Does anyone know? Does one stop chemo or takes a break or goes on a different regime. Thank you.
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Numerous IPMN no cancer
by mazza77- 7 replies
- 3.7k views
Hi all, I wish you are all “well” and staying positive . I am a 43 years old male that on Sept 11th my world turned around ! For the past year or so I have been trying to lose some weight (slightly overweight) and in June I started experiencing acid reflux in my stomach that caused me to pause running . Cut the story short in Sept I was referred to have an ultrasound to double check my stomach , which was fine but they found a 3cm cyst around my pancreas (Not in). After CT it was confirmed that it was inside the pancreas but it was not malignant but I was asked to do an MRCP. MRCP came back last week and now I have 6 IPMNs (yes 6) all over my pancreas …
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Folfirinox experiences please 1 2
by Didge- 28 replies
- 26.9k views
OK, new thread. Partner had scan results which show 2 tumours in the liver. His chest pain is unexplained as there appears to be no recurrence at the original site although I think it's suspicious. He has opted for folfirinox which I am reticent about because he was unable to tolerate gemcitabine although I know it can be different with another drug. Please could any of you who have experience of folfirinox, either yourselves, or partner/relative etc. give me a brief rundown of what stage your cancer was at, how long you were or have been on it and how much 'nursing' is needed for the patient. He is going to have a port. We did ask about 'how long' for folfirinox PC …
