Treatment, symptoms & side effects
A forum to focus on treatment related issues, symptoms and side effects from treatment.
223 topics in this forum
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NHS funded chemo - who qualifies
by TeniOla- 3 replies
- 3.4k 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
- 3.6k 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
- 11.7k 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
- 12.5k 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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- 4 replies
- 4.4k 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
- 4k 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
- 4.5k 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
- 3.2k 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
- 5k 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
- 4.2k views
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
- 3.4k 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
- 6.9k 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
- 33.2k 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 …
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Pancreatitis 3 Years After Whipple?
by concerneddil- 6 replies
- 7.9k views
My MIL is a 4 year pancreatic cancer survivor and 3 years post Whipple. In the past year she has developed a growth on her pancreas which was biopsied and cancer cells were not found; they think it might be scar tissue, but it keeps slowly growing. Over the same time period she has developed strong abdominal and back pain and has chronic and debilitating diarrhea which has caused her weight to drop to 100 pounds. Has anyone else developed something like this 3 years after a Whipple? I am wondering if she has developed pancreatitis. She is 80, so the weight loss and constant diarrhea are very concerning. She has been on enzymes since the Whipple.
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Upcoming SABR radiotherapy
by b9_iwish- 0 replies
- 4.7k views
I was diagnosed with locally advanced pancreatic cancer attached to the Portal vein and deemed inoperable, in November 2019. Since 27th January, I've had 12 cycles of Folfirinox which I finished 14th July. My ca1-99 count in March was 207 and 2 weeks ago registered 25. I had a CT scan at the end of the chemotherapy and the results showed a stabilised tumour and no metastases - the tumour measured 40mm x 30mm in January 2020 and remains the same size to date. At the MDT meeting my oncologist met a radiologist Dr Luis Aznar-Garcia who said he'd like to have a go with SABR radiotherapy. I agreed with the oncologist and have been CT and MRI scanned to set up the 5 days of t…
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Prolapse surgery with pancreatic cancer
by Jo sister- 2 replies
- 6k views
Hello everyone. My sister has had PC for 3 1/2 years, having rounds of different chemo. Diarrhoea has been a serious side effect of the chemo and she has developed a large, painful and permanently exterior rectal prolapse. Basically, she cannot do anything but lie in bed and cannot think of further chemo until the prolapse is sorted. She was shattered to be told that the colorectal surgeon would not consider any surgery, either through the abdomen or perineum, because of her cancer. She has been signed off by him and simply left in a desperate state. I don't know yet whether laparoscopic surgery was discussed, but I'd presume he considered this and dismissed it too. …
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Folfirinox and effects 1 2
by Brian- 39 replies
- 54.6k views
Hi there, my wife who is 51,was diagnosed was pancreatic cancer in April and has had 3 cycles of Folfirinox chemotherapy and is due the 4th cycle on Thursday. She is scheduled to have 12 cycles. However her quality of life has not been good. She has had sickness every few days and last week had 4 days of diahorrea which resulted in her being unwell and I had to take her to A&E at the hospital where she was diagnosed as being dehydrated and required intravenous fluids. Her main issues are that she has no appetite at all and does not feel like eating and drinking and is fatigued. She is quite despondent about it all, especially as she has lost a lot of weight. All the…
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Bile duct Stent
by Vera Bruty- 1 reply
- 7.7k views
I was diagnosed with malignant pancreatic cancer in January 2020; it was decided that surgery was out of the question at my age (85) and a stent was inserted. I was able to control pain in my lower back and stomach with paracetamol for the first three months, but now I am experiencing considerable discomfort in my back and stomach, especially at night. I have kept my weight constant by eating a healthy diet. I have been taking Creon capsules with every meal and with snacks, I take laxatives, and I have spaced out the paracetamol to take only 8 in 24 hours. I tried cocodamol for a time but reverted to paracetamol when I seemed to be getting more stomach pain. I als…
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Chemo and dialysis
by GinaBee- 1 reply
- 6.1k views
Hi. My mum has been diagnosed with pancreatic cancer. She is currently on kidney dialysis and has been told chemo is not an option because of this. They are going to consider operating but she has issues with her heart due to the dialysis so this might not be possible. Does anyone has experience of pancreatic cancer with a dialysis patient? Thanks.
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Treatment break
by Theresa Upton- 12 replies
- 37.4k views
Hi, I have just completed 13 rounds of folfirinox after being diagnosed with stage 4 PC and liver mets in October 2018. I have been accepted onto a immunotherapy trial and will continue with chemo until the trial is complete, this should involve approximately 4 more sessions. My oncologist has been talking to me about having a chemo break which I know I would benefit from but I am also very worried that the tumours will come back if I am left with no treatment. I have had an excellent response to folfirinox, my main tumour is 80% smaller, my liver mets have significantly reduced, I have not lost any weight and I am well in myself. Has anyone any thoughts/experience around…
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Port-a-cath issues
by JohnDoe60- 2 replies
- 14.8k views
Hi, I have a question regarding portacath. During my mom's third cycle of Folfirinox, the nurses were having trouble flushing my mom's portacath. The main issue was there was no blood outflow from the line, despite continuous inflow. But after several times trying, like asking her to put her hands above her, coughing, turning etc, the nurses were able to draw the blood and subsequently flush the line. We continued to have this problem during pre and post chemo flushing on the fourth cycle, and during routine monthly flushing. On the fifth cycle, there was no blood outflow at all. It delayed the chemo because my mom had to get a chest X-Ray to confirm that th…
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Lynparza -olaparib)
by Nighean- 1 reply
- 7k views
Has anyone heard of the treatment above? A relative sent me a short article about it and I'd not heard about the drug before. Apparently it has been liscenced in the US for Pancreatic cancer. Anyone know if it is used in the UK?
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CT scan gives me the shivers
by memorris50- 0 replies
- 5.7k views
Had my second CT scan yesterday. Not long after I got home I started to shiver uncontrollably. I was advised by the hospital to wrap up warmly and drink plenty to drive the contrast medium out of my system. Within the hour I was feeling a lot better. However, I am wondering if anyone knows of anything else I could be doing to reduce this side effect?
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Recently diagnosed PC
by b9_iwish- 4 replies
- 7.8k views
After a CT scan end November a tumour was found in the mouth of the pancreas. I had an endoscopy US and biopsies on 20 Dec which showed the tumour to be 33mm x 40mm and classed as adenocarcinoma. I asked the specialist nurse what stage was it, she replied stage numbers weren't used any more. She also concluded that it hadn't spread. Occasionally I get constipation and have tried prunes, but I suffer a continuous burning/griping sensation that sometimes lasts up to 3 hours. I've suffered muscle atrophy about 30% loss. But I'm eating 3 meals a day plus snacks in between with little weight gain. My GP prescribed Creon 10000, but again these give me uncomfortable griping s…
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Hiccups
by Jeanettesendler- 5 replies
- 8k views
Hello, Has anyone experienced ongoing hiccups which prevents my partner from sleeping during the night. Also very exhausting during the day. Any suggestions how to stop them? I understand it is caused by his stage 4 pancreatic cancer . Thanks in advance Jeanette