Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
399 topics in this forum
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Help! Swollen Feet
by LilyG- 1 reply
- 5.6k views
Hi, Been offline for a couple of weeks having pyeloplasty which we tried to coincide with T's week off chemo so that the kids would have one of us there; however that week off also coincided with his 1st case of severely swollen feet and calves and slightly swollen face (eyes). He had his bloods as usual on the Monday and it didn't really show anything other than not great platelets but they have been reducing as the chemo cycles have progressed. I don't think he had his tumour markers done but he did the following day and he has had a course of chemo since so I am assuming that they were inconclusive. Any idea if it's the chemo or tumour interaction. T's Oncolog…
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Did anyone see the article on CV247?
by Juliana- 4 replies
- 8.1k views
That was in the Mail on Sunday - 31st January 2010? Unfortunately it is not on their online paper, so I cannot link it here. I have contacted the journalist who wrote it and she has given me a copy of it .docx - which I cannot open :S I will give you a brief outline: Diagnosed with terminal lung cancer 11yrs ago, Fred Portch then 61yrs old was told by drs that there was no more they could do for him. "They said I could be dead within the year". 'When I was told my kidney cancer had spread to the lungs in 1998 and that the tumors were growing fast, I was basically told by 2 hospitals xxx in Hertfordshire and xx in London, to go away and die', recalls Mr Portch. …
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Electrocrystal Therapy
by Juliana- 4 replies
- 5.4k views
Hi all, Had my first session of electrocrystal therapy yesterday. Not sure what to make of it all, as it does sound a little 'out there' as such. It was non-evasive and done in about an hour. The gent performed a PIP scan on me to see for any energy blockages/leakage but I was quite disappointed with the scan as it showed hardly anything wrong (I know that sounds wierd but I expected to see activities in lungs and stomach area) - my 'colours' were pretty normal. He did mention a small 'bulge' in the energy around my spleen (which is on the left hand side of my stomach) - which is the place I am NOT experiencing any pain in atm! He did a sound reading on vari…
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- 1 reply
- 4.4k views
Hi all, I have posted this in the surgical section, but wanted to advise advanced cancer patients of this... I would just like to inform you that the following research group from Oxford University is adding pancreatic cancer to their list of health experiences on their website at http://www.healthtalkonline.org/ Healthtalkonline is the award-winning website of the DIPEx charity and replaces the website formerly at dipex.org. Healthtalkonline lets you share in other people's experiences of health and illness. You can watch or listen to videos of the interviews, read about people's experiences and find reliable information about conditions, treatment choices and…
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Help! - Neuroendocrine carcinoma
by SJ73- 1 reply
- 4.4k views
Hi all I have been reading your posts the on the site for the last couple of weeks since my Dad (63yrs) had an 'informal' diagnosis of pancreatic cancer with lesions on the liver. We have been to see the consultant today following CT scan, blood tests and biopsys of liver and pancreas. He has had very few symptoms to date, just small weight loss and a 'dull on and off' back ache so this was discovered almost by default as he had some investigations for prostate problems in December which led to further investigations. We went today fearing and expecting the worst having some knowledge of outcomes of pancreatic cancer prior to this through my job but then after reading…
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My Beautiful CHris (also in Carers)
by Trevor- 5 replies
- 6.5k views
Hi All My beautiful Chris left us this at around 3.30 on Friday morning. She was so peaceful, & was in my arms. For short-term information please go to www.girls-have-fun.co.uk God Bless Trevor
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Advice please
by LynnC- 4 replies
- 5.5k views
Iain was diagnosed with inoperable pancretaic cancer in November this year. After a really traumatic time at xx Hospital where they finally managed to get a stent in his bile duct we got him home. Unfortunately three days later he was vomiting becuase his bowel obstructed! The surgeon at our local hospital has been brilliant and performed an adapted bypass, because he was not able to attach the bowel to the gall bladder because it was gangrenous! This was a suprise as we did not realise the stent had blocked off too!! He had the surgery on christmas eve and despite being really ill with septicaemia is doing really well now, I think. He desperately wants to start his chemo…
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Clair: Email Responses
by clair2305- 3 replies
- 6.3k views
Dear All this is the first one I had from MD Anderson Centre (I hope the links come up ok):- 1. WHAT PROGRESS HAS BEEN MADE WITH REGARD TO PANCREATIC CANCER IN THE LAST YEAR? For information about the progress in treatment for pancreatic cancer, you may be interested in listening/reading M. D. Anderson's Patient Power Webcast. The webcast topics focus on the latest cancer treatment, prevention and things to help make decisions about cancer. To listen to the webcast entitled " Advances in the Treatment of Pancreatic Cancer," please visit our website at: http://www.mdanderson.org/publications/patient-power/episodes/2008/pancreatic-cancer-treatment-webcast.html …
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Finished chemo & having a rant ;) 1 2
by Juliana- 42 replies
- 33.5k views
Hi all, I finished chemo last week - hurrah! I have to say I found chemo much harder 2nd time around, emotionally - than I did first time around. Several reasons I guess, mainly because first time around you are given hope, that it could cure you, that slim possibility that you grasp hold of and help steer you through the sessions. You don't get that 2nd time around it seems, you are on the same ride - but they don't bother telling you to buckle up for safety as it doesn't seem to matter anymore, however, they will still take a picture of you screaming on the way down During my course - Gemcitabine - once a week for seven weeks I missed one session due to my …
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Update on Chris
by Trevor- 3 replies
- 5k views
Hi Everyone Sorry if I've been conspicous by my absence, but it's all been a bit hectic with Chris & I, plus our holiday as well. Chris became really poorly early November with swollen & very tender/painful arms after her chemo on October 30th (her 11th in this sequence since August). Her legs, which reacted in same way earlier in year (after her first 10 Gemcitabine treatments), this time were only slightly affected. She suffered two weeks of misery, barely able to lift a fork to feed herself. After CT scans, ultrasound on her arm & Xrays we established there were no blood clots or further cancer spread, although she had a little fluid in her right lung/ch…
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Back on the dratted rollercoaster
by Nardobd- 3 replies
- 5.1k views
Well, we thought everything was under control....I should know by now that's a bad mistake! Ted is jaundiced again. The stent put in only 9 months ago has been compromised and needs to be replaced. The jaundice and the stent have caused local inflamation so it's difficult for them to see what's going on with a CT Scan but he does have confirmed swollen lymph nodes and his tumour markers are back up to 300. The tumour is definitely inoperable and although the scan shows poor differentiation the radiologist thinks it may be slightly larger. Whilst there is no evidence of any metastases, it's not looking good. We've taken it on the chin and are still determin…
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Update
by Ellie- 8 replies
- 7.8k views
Hi everyone Like Clair, I have not been able to get online because my laptop has been in for repair for the last 10 days. I was starting to get withdrawal symptoms, not to mention frustrated, that I couldn't get to my email, online banking and you guys. Anyway, hopefully it's sorted now and I've just had a read through the latest postings. Nicki - so sorry to hear things are not going well for Ted at the moment. It's a blow, after he was doing so well. I know you will keep fighting and doing your best to get things sorted as much as possible. Juliana - you must be going through it, not knowing for sure whether it's scar tissue on the scan. It was dishearte…
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- 4 replies
- 7k views
Hi, We have just had my husband's 1st CT scan since he has started chemotherapy (for those that don't know Trevor was diagnosed with Kidney Cancer almost 3 years ago, they removed his kidney along with the 18cm tumour but in April this year his pancreas had signs of 'pancreatitis' and 'cyst-like masses'...we were given the all-clear twice, then the xx told us otherwise, went through a further 6 weeks of tests and an operation that could not go ahead as the tumour had by now spread and eventually we found out that he had two tumours which weren't secondaries but new primaries and locally advanced pancreatic [1 tumour was 2cmx1cm and stable, the other was about 2cm in Ma…
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The Silent Cancer Documentary
by clair2305- 1 reply
- 4.4k views
As you may know, during PC Awareness Week, the Community Channel aired a documentary "The Silent Cancer". I recorded in on my Sky box. I've watched it (Blue hasn't) and there were some interesting people on there. I was not sure when it was all filmed (I know some was 2008) and most of the patients I think were post surgery. However, I made a note of the names of oncologists, etc and list them below:- Prof Nick Lemoine, Director, Institute of Cancer Prof John Neoptolemos, Royal Liverpool NHS Trust Prof Mike Richards, National Cancer Director for England Harpreet Wasan, Oncologist, Hammersmith Hospital Alexandra Taylor, Clinical Oncologist Colin Joh…
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- 0 replies
- 6.2k views
Hi, We have just had my husband's 1st CT scan since he has started chemotherapy (for those that don't know Trevor was diagnosed with Kidney Cancer almost 3 years ago, they removed his kidney along with the 18cm tumour but in April this year his pancreas had signs of 'pancreatitis' and 'cyst-like masses'...we were given the all-clear twice, then the xx told us otherwise, went through a further 6 weeks of tests and an operation that could not go ahead as the tumour had by now spread and eventually we found out that he had two tumours which weren't secondaries but new primaries and locally advanced pancreatic [1 tumour was 2cmx1cm and stable, the other was about 2cm in Ma…
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Swine Flu
by Juliana- 3 replies
- 5.3k views
Hi all, I was at the DR's yesterday updating my Pancreatic Enzyme prescription and she mentioned the swine flu jab. She was quite surprised that I said I didn't want it....infact she said me of all people should be having it (due to my lungs having tumors, and it attacking the respiratory system) and advised I should get it sorted. However, neither my oncologist or specialist nurse or the chemo nurses mentioned it to me as something I should be considering. Personally, I don't want it - the least medication I take the better in my eyes.....Have you or your partners been told to definately have it done? Juliana
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Steroid Use / Effects - Any Information
by Trevor- 1 reply
- 5.6k views
Chris continues to have major trouble with her arms (but less so now her legs, although they are a long way from perfection). She's been prescribed Prednisolone 5mg tablets at the rate of 12 per day! She's taken them now for 3 days. They seem to have reduced her swelling (in arms) but she remains in much pain. Has anyone any information on side-effects / results or speed of effect? They have been prescribed with our planned holiday in mind (depart next Weds 25th); Chris's consultant wants her to go & told us that hopefully the steroids will build her up pre-trip. She had scans & xrays last week which showeds only a minor amount of fluid in right lung, everything…
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Picking brains again ... !
by emcee46- 4 replies
- 6k views
As I've mentioned before on this site, my partner has been previously diagnosed with an adenosquamous pancreatic tumour in the body and tail of her pancreas. Two sessions involving eighteen separate applications of chemotherapy (GemCis) have resulted in a 90% reduction in markers and a 50% reduction in the size of this primary tumour. However, in the build-up to what was planned as a new spell of radio and chemo, a PET scan was done (belatedly?) which showed that, contrary to this tumour being 'locally advanced', it now appears to have been metastatic all along, with further hot spots showing up in the lymph system. The 'good' news would seem to be that these new h…
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Another little frustration!
by Nardobd- 2 replies
- 4.8k views
I think I posted before that Ted was due to have a CT Scan tomorrow. He got a phone call this afternoon to say that the CT Scanner in the oncology department had broken down two days ago and wasn't fixed yet, so his appointment has been cancelled. He will get another appointment "in due course". I wouldn't mind so much but it's not like this is the only CT scanner in the hospital - I've seen direction signs to at least two others. Apparently, though, that's irrelevant! AAARRRRGGGGGGHHHHHHH!
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Husband recently diagnosed
by Nardobd- 16 replies
- 16.5k views
Completely out of the blue my husband, Ted, was diagnosed as having locally advanced PC which is not operable because it involves major blood arteries/vessels. I guess we are still in shock - I keep waiting for someone to tell me how to feel or think (other, of course, than the whole "it's not fair- he doesn't deserve this", which I anticipate everyone goes through). I'm told by our nurse-liaison that I'm asking all the right questions but I feel completely out of my depth and it all seems a bit surreal at the moment. Ted's got a very positive, fighting attitude and is going to start Chemo soon (Gemcitabine). The consultant said that there is a very small benefit by a…
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Combination Therapy
by Trevor- 5 replies
- 6.8k views
In the Times today (page 16) there was an article about combination therapy that specifically mentioned PC. It reported case of Catherine Wilson who is being treated with a combination of lenalidomide & Gemzar (gemcitabine). The treatment/research taking place at St Georges, University of London. The piece reported Ms Wilson (73) PC has been "contained" for more than 3 years to date. Does anyone know anything about this? As you know, Chris is being treated with gemcitabine. Trevor
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Latest on Chris
by Trevor- 12 replies
- 10.6k views
It is a few weeks since our first update on this forum, & 8 months since Chris was diagnosed & given approx 4 months survival! So, we’ve doubled the original prognosis which is a really great result & better than any of us could hope for. Today we have had a meeting with her oncologist, & it’s fair to say we have had mixed results. The bad news is that there is the liklehood that there has been spread into Chris’s lower back (in a vertebrae) & also in her upper right femur. To quote the oncologist “there is a change of texture & density”. He has told us to closely monitor any pain in those areas & report immediately any increase (currently …
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Photodymanic Therapy (PDT)
by Nardobd- 6 replies
- 6.8k views
I've just read a very exciting article from the Mail, which can be found on the following website: http://www.dailymail.co.uk/health/article-1219948/A-ray-light-kill-cancer-cells-leaving-terrible-scars--offered-it.html The KillingCancer website gives contact details for the team involved and I've emailed the contact for pancreatic cancer asking about the clinical trial for PC and the funding stream. I will, of course, share the reply with everyone here. Nicki
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OGF treatment
by Juliana- 4 replies
- 7.3k views
Hi guys, Read something interesting on another site I belong to 'No Surrender'. A gentleman from America who is being treated for ocular melanoma posted it - here is what he said: "In addition to my conventional oncology treatment, I also have an integrative MD (specialising in orthomolecular medication) who administers to me three times a week IV drips of Vitamin C, K3 and OGF, all at a very high dose. It is the OGF that I wanted to mention, as my doctor told me that it has been tried on patients with pancreatic cancer and the early findings are very positive. It has no nasty side effects, and can be administered together with the conventional programme by a practit…
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TomoTherapy ...
by emcee46- 3 replies
- 7k views
I wonder if anyone knows anything about the relative benefits of TomoTherapy as opposed to 'normal' radiotherapy? I gather that this targeted and high-intensity 360 degree version is regarded highly in the USA and yet is only available thus-far at Addenbrooke's in Cambridge, Middlesborough and one other centre (?). My partner has recently completed her 18 sessions of GemCis and achieved a 50% reduction in tumour size plus a 90% reduction in markers and is now moving on to radiotherapy. But, before she starts, I'm obviously wondering about the merits of this treatment or photodynamic therapy as opposed to the usual treatment here in the UK (some five weeks of daily '…