Treatment, symptoms & side effects
A forum to focus on treatment related issues, symptoms and side effects from treatment.
222 topics in this forum
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Folfirinox - How long / frequency
by Slewis7313- 9 replies
- 14.6k views
There has been a flurry of Facebook activity over the last week relating to Maggie Watts and the Parliamentary Debate. It is amazing and encouraging to see what has been accomplished as far as visibility of Pancreatic Cancer through this and other initiatives. Through all this activity, I have become aware of and joined a Facebook group called 'Families in Support of Pancreatic Cancer Awareness'. They are a merry band of around 1000 sufferers and carers who obviously support each other very much in line with this forum. They have put me in touch with a gentleman in the USA who is in a similar position as myself, but with some serious Folfirinox treatment under his b…
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stents not working
by amber- 5 replies
- 9.3k views
Dear all I am new to the post. I am posting about my brother in law (only 49) who is in the Netherlands (I live in the UK but the forum information here seems to be much better) and this is one of the few ways I feel I can be of help to them. He was recently diagnosed, and they are considering treatment (chemo, possibly with operation) but they first need to clear his jaundice. They have tried 2 stents (metal and plastic) and neither of them are working - any experiences of this? Also - has anyone has a stent placed under general anaesthetic? Both attempts were very painful. Lastly - does anyone have any experience of the nanoknife treatment (think its available…
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Men Only - Sore willies!
by Didge- 4 replies
- 7.9k views
Sorry, but my partner has given me permission (and encouragement!) to ask about this side effect. Have any men suffered from soreness in the aforementioned part as a consequence of chemo (in his case folfirinox). And if so has anything worked to alleviate it? I've often thought that the effect cancer and its treatments have on sex lives is not often spoken of, so I am speaking!
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Abraxane - Wales
by cbrooks- 15 replies
- 17.3k views
Hi everyone, just posting to say that I think the all wales strategy board who decide if abraxane will be available on the NHS in Wales had a meeting yesterday, hopefully we will find out the outcome soon, cant find anything online this morning. I am waiting to see my dads consultant oncologist on Monday to discuss the outcome of his IPFR referral for abraxane, and im really hoping that we will have a 'Yes', or that it has been passed by the strategy board. My dad was unable to have folfirinox as he has a mitral heart valve replacement so started on Gemcitabine 2 weeks ago, but was unable to have it last week as to elevated Lfts..... fingers crossed we can go ahead with…
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Let down by hospital
by Didge- 7 replies
- 9.4k views
My partner was operable (last autumn) but had to stop chemo early because of poor kidney function. He was referred to kidney specialist who said chemo could restart but at lower dose and with some precautions prior to treatment. But on his next appt he was told by a junior oncologist (not the one he usually saw) that it had been agreed no more treatment. This was 4 weeks ago. He had blood tests and was due to go back to see his regular oncologist around now which had been delayed because of first her being on holiday and then us. But he had to go back to see a junior oncologist last week when he developed pain suddenly a week a go. He had been told his tumour levels a …
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B12 deficiency
by Sones- 6 replies
- 11.3k views
Due to having the Whipple I have problems with absorption, therefore I take prescribed Vitamin D, iron tabs daily and a B12 injection 3 monthly. My GP informed me yesterday that they are unable to get hold of anymore injection (none in the country). Does anyone have this injection and having the same problem? Sue
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Gemcitabine and kidneys
by Didge- 12 replies
- 11.1k views
We have hit a problem. My bf has had no chemo for a month now and has been plagued by various infections along the way. But the latest prob has the docs stumped. His kidneys are in a poor way and they don't know why. this is preventing him restarting chemo. They are now wondering if it's an autoimmune problem or kidney viral infection. Has anyone else suffered these probs. Would seem to simply be chemo side effect but docs don't seem to think so.
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Epigastric hernia
by suef- 4 replies
- 8.7k views
Dear All, I had a Whipple in 2010, had follow-up scans every six months and, in 2013, a scan revealed that I had an epigastric Richter hernia containing the anterior wall of a short segment of transverse colon. I had the operation to repair the hernia earlier this month. I opted for a private hospital but with my (wonderful) NHS surgeon. The operation took just over an hour. The surgeon inserted mesh along practically the whole length of my Whipple scar and he also took the opportunity to tidy up some other things. The operation was done via keyhole surgery. I spent 2 nights in hospital, and then two weeks resting at home. I am continuing normal life except …
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Update - stabilised tumour after folfirinox
by Annie14- 13 replies
- 12.8k views
Hello everyone! I just wanted to update you all! My husband was diagnosed with inoperable PC in November 2013 and has just finished his 7 cycles of folfirinox! The scan results following this have shown a stabilisation in the tumour and his cancer markers have come down from over 1000 to around 100! He is going to have another six treatments before other options explored! He feels great and has put on weight, still working and managing the side effects which haven't been too bad! We'd take this for awhile longer considering how we felt the day he was first diagnosed! Hope you are all well! Fiona
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Chemo for symptom reduction? 1 2
by Didge- 26 replies
- 23.7k views
I think we are about to enter the phase where we have to have to consider the next step. Bf operated in Oct and started chemo before Christmas but he had to stop for 3 weeks after 2 doses because of infection. During that time cancer symptoms have returned which is especially annoying as before chemo he was very well, tumour markers 'normal' eating normally, colour healthy. Looks like the chemo knocked out the immune system and then stopped so was not killing anything either. Missed rare quality time together over Christmas period (we do not live together). The decision as to whether to continue with chemo 'to extend life' or to say no, is looming. But if he has pain …
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First scan results after session 4 of Folfirinox....
by Kerri9499- 9 replies
- 13.2k views
Hi all I just wondered if anyone else had experienced this... Mum had her 4th Folfirinox treatment last Tuesday and to be honest has had a pretty crappy time of it since. The last 3-4 days though she has had a new symptom which is griping stomach pains and aches just below the belly button. When it started it was quite intermittent but since yesterday it is more constant. It was accompanied by diarrhea but the last episode of that was around 8am this morning. I have been giving her loperamide since yesterday. She hasn't been sick but has felt slightly nauseous a couple of times. She is also very tired, drained and lethargic. Not really got much of an appetite but ha…
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Folfirinox- seems to be working! 1 2 3
by nikkis- 60 replies
- 52.5k views
Dear all, Paul had a scan on Friday, after Folfirinox number 7, and have just heard that it looks good. He has a small amount of tumour left after surgery (see previous posts), and there was some in the lymph glands, both of these have shrunk back. His tumour markers have also gone down from 800-1000 to 160. Apart from feeling terrible from the chemo, he generally feels much better, if that makes sense. He has managed to stop his morphine infusion, and the pain is controlled by Abstral tablets. So all really good. Paul, of course, in his positive, determined way, was convinced it could only be good news, while I have been falling apart all weekend! Still a long way …
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Chemotherapy options 1 2 3 4
by Carole McGregor- 95 replies
- 87.4k views
Hello everyone. This is my first attempt at posting on the discussion forum so fingers crossed I get it right ! My lovely husband has recently been diagnosed with pancreatic cancer. We've been told that it is borderline operable and his surgeon wants him to undergo a course of chemo first to try and shrink the tumour before deciding if surgery is to go ahead. We asked for a second opinion and this confirmed our surgeons position. I know that this is a relatively new approach in the treatment of pancreatic cancer and there are, as yet, no completed studies or trials to assess the effectiveness of it. I just wondered if there was anyone out there in a similar position ? …
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Important to be VERY PUSHY
by suef- 2 replies
- 7.9k views
Dear All, As many of you know, I had a Whipple in Brussels in 2010, have recovered very well. But in Brussels the surgeon underlined to me the importance of taking Vitamin D3 supplements as my body will not digest that vitamin well after the operation. But when I came back to the UK in 2012, no one believed me! I asked my GP to test my vitamin D3 levels, he refused. I asked the consultant at the (very well-known) hospital to test me for D3, he said it was not done in the UK. I showed him an email from my surgeon in Brussels recommending D3 testing, he ignored it. So I bought supplements from the chemist, but you can only get very low doses. Now I have moved, h…
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- 4 replies
- 8.3k views
Hello, This is my first time on here, My mum had surgery for PC in June they took all the pancreas and the spleen away, she recovered really well for an 72 year old. she then had 3 month of chemo, but got fluid round the heart so they stopped the chemo. Now she has just gone for a scan as she was losing weight again but very slowly this time. The ct scan revealed a Lump in the same place the pancreas was, has anyone else had this or know if it could be the cancer back, as she has to wait a week before going back to the Hospital to see the Dr's. I am going with her on Monday and I want to be prepared, for whatever they are going to say. She has been feeling all right …
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Nanoknife and Cyberknife
by MSH- 16 replies
- 21.3k views
If there is one positive to come from pancreatic cancer, it is to be diagnosed at a time when so many exciting treatments are being developed. I am coming up to a year since diagnosis, and statistically should be dead. The one year survival for males is only 17%. Instead I have had the benefit Folfirinox which has stopped any symptoms from the disease for many months and reduced the activity of the tumour to a bare minimum, at least according to the PET scan. I have had the benefit of a recent MDT meeting who found my tumour to be inoperable and suggested I await the recurrence of further symptoms before having second line chemotherapy. Well thanks but no thanks, I pre…
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- 4 replies
- 10.4k views
Some information for anyone in Norfolk or anyone elsewhere who does not have access to district nurses who will deal with PICC lines, Hickman lines or other chemotherapy related care at home. In summary our local district nursing team does not provide IV line care whereas another team up the road does. I got no joy from the team or hospital so contacted our local MP. The upshot. A trial is now being launched for a subset of patients to have IV line insertion and line care at home. History is in my main thread here - http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168#p9557 This may not immediately benefit Mum, but AS LONG AS PEOPLE LIKE US KEEP TH…
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Post Whippple and Pancreatectomy Pain
by nikkis- 14 replies
- 15.5k views
Hi, I have found it really useful reading all your post, and have had great advice from the nurses and felt it was time to post something myself. My wonderful husband Paul is 49, and was diagnosed with pancreatic cancer in June, he has recently undergone a whipple, as a result of this his bowel perforated and 2 weeks later he went back to theatre. This time they also removed his pancreas in an attempt to get rid of the last of his tumour. Unfortunately he still has a small piece of the tumour left they couldn't get, but his oncologist is still very positive about his outlook. He is starting chemo in 2 weeks and will also need radiotherapy. He is now 6 weeks post 2nd …
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Has anyone tried this treatment for PC?
by jdlinder- 0 replies
- 8.5k views
Ifosfamide, Mesna, Doxil and abraxane
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Having a whipple op 1 2
by Daver68- 31 replies
- 40.3k views
Anyone with experience of this procedure would be most welcome As I am due to have whipple op on 28/08/2012 it has been over a year since first symptoms pain in right abdomen and considerable weight loss 3 stone now under 10 stone and after finally getting a ct scan they have booked op for end of august
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Just started on Chemotherapy.
by kwaitang- 0 replies
- 6.3k views
My husband, Keith has inoperable pancreatic cancer that has spread to his lymph nodes. He has just started on chemotherapy. The only symptom so far is a bit of bloat for a few hours. Is this normal? Do the symptoms vary for each treatment? Is he lucky or is it going to get worse. Arlene.
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liver levels up?
by jdlinder- 1 reply
- 6.7k views
Hi everyone, Quick question...I am now on Gemzar/Abraxane, Interferon, and Leukine. My liver panel was fine last week but this week they went up and I am not sure why. My AST is 81, ALT 144 and Alk Phos.-162. What would cause a sudden increase in my levels in one week? Anyone else have this problem? Would love to hear your input! Thanks so much! Jodi
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Timescale
by xanie- 1 reply
- 7.1k views
Hi, My mum is due to see a consultant at my local hospital this week with regards to an operation since she was diagnosed with pancreatic cancer 4 weeks ago. I wonder if anyone would know how long it may take for my mum to be admitted into hospital? I know she would have to go for a pre assessment but do not know what tests that would involve. It is so difficult to try and plan time off work to help my mum if I have no idea how soon she is likely to be admitted will it be weeks on days? Any advice would be helpful
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Pill boxes
by suef- 0 replies
- 8.3k views
Someone mentioned in a recent post that they had put their pills in a beautiful pill box bought on Ebay. Having had a Whipple 3 years ago, I take 15-20 Creon a day - and have acquired quite a large collection of large pill boxes! It makes a huge difference to be able to produce a beautiful pill box rather than the ugly Creon container. My 'hobby' has snowballed and now friends look out for suitable boxes. As the Creon pills are so large, my 'pill boxes' tend to be old sweet containers, very often from French sweet stores. And I love them to bits as each box has happy memories of where I bought it or who gave it to me! SueF
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Folfrinox and type 1 diabetes
by Sueba- 3 replies
- 8.3k views
Hi all Well Mick starts up again on chemo on Friday (Folfrinox), but this time we have an added worry! He had the Whipples on Feb 18th and is now fit to start adjuvant chemo, but due to having his whole pancreas removed he is newly diabetic. Hes doing quite well with the insulin although now he is eating a bit more his sugars tend to run a bit on the high side. I was wondering if anyone on here has had any experience on Folfrinox who is diabetic? We know the 5 days on steroids will affect his blood sugars and we are wondering how to manage it when it is actually being infused. Our diabetic consultant suggests eating as often as possible but he too doesn't really know h…