Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
398 topics in this forum
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Message for Laura
by volmod- 0 replies
- 3.2k views
Dear Laura: I'm sorry your husband wasn't able to have the Whipple's op earlier this year, but glad to hear he's doing ok at the moment. If you think it would help you/your husband to talk to someone who has had the same experience and survived, please get in touch via support@pancreaticcancer.org.uk warm regards, Vee
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Clair and Blue (Part 2) 1 2
by clair2305- 40 replies
- 25.4k views
Dear All I've been a bit quiet on here lately and if I'm honest, it's because the computer is in the teenagers bedroom which is like a bombsite which I shut the door on to try and pretend it's not there!! Anyway, to the important stuff We went to the hospital yesterday (another very long day). Blue's CT scan results are that the cancer is stable. When I queried this they said the tumours had not changed in the last scan in December. We know this is good news but did feel a bit cheated. We've had one bad scan (the first once starting chemo) then the good one in December with shrinkage and now this one. I said to Blue "it's good news" and his response was "ye…
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Advanced Cancer Patient ----- > Juliana 1 2
by Juliana- 31 replies
- 25.6k views
Hi guys, Woke up this morning feeling shaky, cold and shivery. Weighed myself and found it to be 6st 12lb....so I have lost weight again. Got downstairs to see the delivery of 3 brand new pine hinged boxes, memory boxes I had bought online for the kids. Realisation hit, I am dying and it's happening quicker than what I had hoped. I have cried many tears today, and I'm in the process or writing a letter to my kids, just blabbering on how much they mean to me - I just can't express it well enough or to be truthful there is not enough paper in the world for me to write down my love for them. My love for my enduring husband too.....10 years I have known and loved h…
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- 9 replies
- 6.9k views
Ted was called back to see the consultant today. His CA19-9 markers are the highest they've ever been - even higher than when he was first diagnosed. Thinking that the radiologists missed something on the scan, the consultant took it back to the MDT meeting but they can't find any difference other than the area being a bit less "blurred" (Ted's scans have alwas been difficult to read because it was hard to differentiate the tumour), but if anything that should be good news rather than bad. The consultant said that this is "unusual" and that neither he nor any of his colleagues (and our local hospital has been a specialist centre for some time) had seen this sit…
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just a bit of a scream
by deb68- 2 replies
- 3.8k views
Hello to everyone and heartfelt sympathy to Mark on the loss of his partner recently. I have no specifc reason for coming on today other than to silently have a scream at what this disease is doing to my beautiful daughter. Gemma is holding her own but it is so heartbreaking to watch her slowly fading away each day - and even more frustrating that NO treatment at all can be considered as by the time the diagnosis was confirmed she was just too weak. What really gets to me is that if they had performed the surgical biopsy last year when the troubles first occured, she would have been strong enough to have surgery and maybe chemo and then would have had a higher survival c…
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Phase 2 - chemo-radiotherapy
by scp38- 4 replies
- 4.9k views
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Thanks everyone ...
by emcee46- 8 replies
- 6.2k views
Thanks everyone so much for your thoughts and guidance over my partner Ane's adenosquamous carcinoma of the pancreas. We just lost her yesterday morning at The xx in xx. As I gather it, this particular variant of PC really doesn't often take prisoners and hasn't really provided anyone who survived long enough to collect data from in the past (?). Either way, my Danish Pastry (as I called her) managed to last sixteen months and only succumbed to uncontrollable internal bleeding which could not be arrested due to her fragility (she'd gone down to a size 5/6 as an estimate). From what I could gather, her tumour was still regarded as 'stable' at the time of her slip…
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An update on Ted
by Nardobd- 2 replies
- 4.2k views
We had our appointment with the consultant yesterday and I'm pleased to report that Ted's tumour seems to still be stable, despite a high CA19-9 Marker. The scans showed no change, so the plan for the moment is to monitor the CA19-9 Marker until the end of August when a decision will be made as to what comes next. Nicki
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recently diagnosed and looking for advice please
by SteveBee- 19 replies
- 13.4k views
Hello my name is Steve and my wife is 52 years old and in otherwise good health and has been diagnosed with advanced pancreatic cancer- adenocarcinoma which is in the tail and inoperable. This was on the 9th of Feb, we had a biopsy under CT scan and have already started chemotherapy with what i understand is the standard first line drug Gemcitibine. We are two weeks into a 7 week course and have a review meeting with our consultant in a week before potentially embarking on the last 4 weeks of the 7 weeks. I wondered if anybody could tell me if they have experiences of Gem not working and if so what other chemo/therapies were offered. When we first met our consultant we we…
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update on younger people with pc
by deb68- 5 replies
- 5.7k views
Hello everyone, its been a while since I posted regarding my 27 year old daughter, Gemma, who has inoperable ca pancreas along with portal hypertension and associated vascular problems arising from the pc. The update on Gem is that I still have her at home despite a GI consultant at xx hospital telling us on April 1st that she had between 2/3 weeks to live! Gemma cannot have any treatment as she is far too frail to withstand any chemo, but we have managed to get her to a relatively stable place with only oral medications instead of the syringe driver she had before and no canulas or needles in sight! The main problems are the depression which I know is associated with…
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palliative bypass but jaundice returned
by simplesimon- 1 reply
- 5.3k views
Initially diagnosed with PC - whipple operation failed - palliative bypass performed - biopsies gathered during op show no trace of cancer. Pancreatitis possibility - later scans show mass, reduced of its own accord. Almost a year on with routine blood tests and scans under a very good GP, have now developed jaundice. Admitted to hospital by another GP to emergency assessment unit - doctors on duty aware of history and discharge patient advising will contact for CT scan. Have been told should receive appointment in the next 2 weeks - is it just me or does this seem a very long time for a person with jaundice to wait especially with history of treatment for pancreatic c…
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The proverbial bad penny
by Nardobd- 14 replies
- 9k views
I went to Ted's appointment with him this afternoon. I wasn't expecting the news to be great and I was right. His CA19-9 has jumped from 70 in January to 438. The next step is a scan to confirm that the tumour is active again (all the signs are screaming "it's baaaccccckkkk" - he's more tired, getting more pain and gets out of breath quicker etc, so the scan isn't really required in my mind). Then more chemo, IF the consultant thinks it's appropriate. Ted's been in denial for some time. He's not working, so his need to sleep 3 hours plus during the day doesn't actually affect anyone else and he's calling it "normal". He had stomach pains over the weekend but be…
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Younger people with pc 1 2
by deb68- 25 replies
- 24.8k views
Today I brought my 27 year old daughter home from hospital after 10 long weeks. Last year she complained of stomach pains and indigestion and to cut a very long story short was finally diagnosed with a tumour on her pancreas just two weeks ago even though she has had every investigative procedure possible over the last two months. Unfortunately the tumour is inoperable and she has added complications of portal hypertension and bile duct obstruction. I cannot tell you how difficult it has been to watch this beautiful young woman endure this suffering. The consultants at the hospital were baffled by her as she is such a rare case and I think the last thing they thought wa…
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Message for Juliana/Lily
by Nardobd- 8 replies
- 6.6k views
Hi again to both of you and it's great to 'see' you back on the board. As and when you feel up to it, Juliana, do let us know how you're getting on. Lily, again only if you feel able to do so, please let us know how Trevor is doing.
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Scream!!!!!!!!
by LilyG- 5 replies
- 6k views
Well, where do I begin...Trevor had his last chemo (Cycle 6, Week 3 of GemCap) on 16th Feb. Since then we had no blood tests but a CT scan on 10th March. We went for the results on 18th March and were asked about Bloods. We said that Trevor hadn't had any since 15th Feb and thought it strange but, thought that they new best. Although we were told in September that if nothing had changed or if the tumour had shrunk they would look at radio, when we went for the results we were told that even though things were stable they would need to review at an MDT to see if radio was feasible as there were multifocal tumours (which was new to us as we though there were 2 large ones bu…
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Esophageal Obstruction ...
by emcee46- 3 replies
- 5.5k views
Picking brains again! My partner's adenosquamous carcinoma is currently stable but the thing had been growing along the stomach to the extent that it has been causing pressure on the esophageal tube. This, naturally, has caused a gagging reflex when she tries to eat or drink and she has to wait until this clears before she can carry on (sometimes 15-20 minutes or so). Question:- given that her consultant did not like the idea of a metal stent to expand the tube (due to the possibility of it getting 'lost' inside the stomach) and has not suggested anything else to alleviate this discomfort, has anyone else any ideas or experiences please?
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Research contributes toward new cancer treatment
by clair2305- 0 replies
- 3.2k views
Dear All just had a call from someone who said that the University of Kent had found a treatment for pancreatic cancer, so did a search on the net and found this:- http://www.kent.ac.uk/news/stories/peptidesmarkhoward/2010 I've emailed Dr Howard and will let you know the response. Best Wishes. Clair
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MRi Scan Results
by Juliana- 20 replies
- 14.6k views
And the winner is..... Hi all, Had my MRi on Tuesday and was told that it may take 2 weeks for results to come through. So Friday I ring and start chasing it up (as you do) and guess what - they were in already! My specialist nurse called me back and said....'do you want me to tell you now...' and feeling brave I said ok. She then told me it wasn't as bad as I thought....which I had mixed feelings about because the word 'bad' was used anyway. Basically: My lung tumors - largest one measures 10mm (thats 1mm less than the Nov09 scan) = NO CHANGE My tumor around the SMA - NO CHANGE (she then went on to say that even my oncologist may start to consider it as scar…
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Papaya in research study
by clair2305- 1 reply
- 8.9k views
Hiya At the weekend my mother in-law gave me a newspaper cutting about papayas being effective against cancers that included pancreas and liver. I've look on the net this morning and found the article from the University of Florida's Shands Cancer Centre and am now posting the links below:- http://www.ufscc.ufl.edu/Patient/content.aspx?section=ufscc&specialnews=true&id=44724 http://www.news.health.ufl.edu/news/story.aspx?ID=5525 http://insciences.org/article.php?article_id=8482 I am about the email Elizabeth Connor, who is the contact regarding this trial. I will let you know if I get a response. Clair
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Trevor's Results
by LilyG- 2 replies
- 4.6k views
Hi, just to let you know that we met with the Oncologist today and basically there is no change although we did get a different slant. Basically the existing tumours in the pancreas have remained the same but whereas we thought that there were 2, we now know there are many but some have fused together so it looks like 2 masses. There is no spread but some lesions on the liver an fluid on the lungs. Trevor hasn't had a blood test for about 3 weeks, which I thought was odd, but his last one showed slightly low levels of albumin and static markers but they've always been around 30 with one blip. I don't really know what I'm saying here but the upshot is that the scans will …
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How are you all
by clair2305- 10 replies
- 8.8k views
Dear All just wondering how you and your other halves are? Juliana, Ellie, Nicki (and anyone else I've not 'met' yet on here). How was your Valentines Day? Are your areas as cold as Anglia? It's freeeeezing here. Hope you are all well. Clair
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Message for Clair & Blue 1 2 3
by Nardobd- 69 replies
- 44.8k views
Thanks, Clair, for sharing your story so far and I'm sorry that Blue's had such a rough ride. Strangely, I had a client called Blue before I was made redundant last year, but he was much younger that Steven and lived in Hampshire so it can't be the same guy. I certainly understand (as I think all the members here will) the "world falling apart". The frustrations with your GP must only add to the fact that your world has been turned upside down. I know that weight loss is one of the serious issues with PC, so I do hope that the steroids help Blue to gain back some of the weight he has lost. One of the things I've done for Ted is to visit dieting websites for l…
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Triple Bypass Operation
by Walter100- 2 replies
- 5.6k views
Hi. My mum has terminal pancreatic cancer and is now awaiting a triple bypass operation (gastrojejunostomy, choledocho or cholecystojejunostomy & entero-enterostomy I think) to hopefully enable her to be able to eat and be at home for her last few months. Has anyone else here had similar experience and any tips/advice? Thanks.
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Suggestion for new forum: TRAVEL
by LilyG- 3 replies
- 4.9k views
Hi, I was wondering if it was worth setting up a Travel forum. There have been numerous posts that I have read offering great advice and I know that Macmillan have some advice but there is not a lot specific to Pancreatic Cancer. Pre-Xmas, although only going to Worcester, I tried to get some insurance and had a horrible time on the phone to some 'recommended' insurance agents: some of the questions were just awful. So I was thinking maybe we could have some ideas on: Travel Insurance Whether you can fly (T has been told no)? If you can when is the best time? Good things to take with you Good places / hotels to go to and more specifically 'Cruises' as it loo…
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Help! Swollen Feet
by LilyG- 1 reply
- 5.2k 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…