Patient Experience Forum
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
280 topics in this forum
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Melinda
by Slewis7313- 0 replies
- 5.9k views
Melinda, thinking about your question, it is probably best if you start a new thread of your own. Whilst I don't know anything about it, there are obviously people out there who do. If you start a new thread, it will be focused just on your queries and you will get an email notification every time someone updates your thread. If you click on the 'patient experience forum', you will see a tab at the top to create a new thread. Hope this helps Steve
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Pet Scan & constipation
by tummywoes- 5 replies
- 11.5k views
Had the Pet Scan yesterday. Wow, what an ordeal that is I am very anxious anyway, but this test did me in. It took so long, and all the different intervals of the test, the injection, the waiting by yourself in the "quiet area", then more to drink, then finally to the scanner. Holding ones arms up over your head for 30 minutes or so was brutal. Had to have part of the test redone because I moved, which was awful. Then today all day, I was terribly constipated. I think it had to be from the solution you drink, or the injection, or both?..............I am nervous now about the results of course. Had a bad dream last night where I saw red areas all over my enti…
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Never rains but it bl**dy pours
by LindaH- 7 replies
- 10k views
Finished Chemo....about four weeks ago. Usually in my Chemo weeks, I've had a slight swelling in my legs and ankles, but it went in my rest week. So when my right leg and ankle stayed a little bit swollen, I didn't think too much about it, I felt it would revert back to normal soon....four weeks later, still swollen with a slight pain in my calf. Yesterday, I thought I'd better go and speak to a GP. Long story short, she sent me straight to my local hospital to the DVT clinic. No-way did I have DVT, it's just fluid, got to be....nope, went for a scan this morning and it's DVT... I really do not know how much more I can take, I really don't. Thing is, we'd book…
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Question about ca19?
by jdlinder- 11 replies
- 16.1k views
Hello I've been on gemzar/abraxane for the last 2 months and my ca19 was down to 9.6. My doctor by accident took my ca19 the next week, only a week apart from each other and it jumped to 17.6. Should I be concerned??
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wondering if stent is blocked
by LindaH- 7 replies
- 8.7k views
I thought I was starting with a cold because I keep feeling achy and my temperature is up and down, but nothing else has materialize cold wise; no sniffles. The highest my temperature has been was 37.4 which I didn't think was too bad and this morning - Sat 31st, it's 36.9, but it's my tummy ache (on the right side) and pain in my back (on the right side) which is worrying me a little. So, I'm just wondering if these are symptoms of a blocked stent? I've had the stent (I don't know if it's metal or plastic) since December. My skin doesn't appear to have gone yellow colour. Can anyone shed light on my concerns please? Linda
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- 12 replies
- 11.3k views
I had a Whipple in Belgium 3 years ago and have recovered well. When I retired to the UK, I simply went to the nearest specialist centre and was assigned to a consultant. I never got on with him. The first letter he sent to my GP stated that I was taking too many Creon, but I was taking the precise number prescribed by my Belgian consultant. I have put up with him for over 2 years but finally lost my patience with his aloof and uncommunicative attitude. So I asked the support staff on this website to recommend a consultant in another location, not too far away. I had an appointment with him last week - and it was like moving from darkness into light. The new consul…
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Last Chemo session today - Friday 16th
by LindaH- 2 replies
- 6.4k views
Dates etched on my brain.....4th December 2012 ....the day I was told I had an inoperable tumour in my Pancreas. 1st March 2013....the day the Chemotherapy started. 16th August 2013..the day the Chemotherapy finished. Two scary dates ....4th December 2012 and 16th August 2013. Yes, I'm pleased it's all done with, just like Steve in his post, but now my life really is in the Lap of the Gods and it's scary, really scary, but like I've said in my Facebook statement, I've got to go with the flow as I know my Oncologist will look after me and get on with living my life as best I can. Whilst I feel good (ie not feeling ill) that will be easy, but like Steve and Jona…
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PETSCAN RESULTS - ;(
by tummywoes- 2 replies
- 6.7k views
I typed a whole message and lost it???? Anyway, I got the results today from the Petscan, not what I prayed for. ; There is a mass on the tail of the pancreas. It gave the dimensions, etc, called it a primary hypermetabolic necrotic mass maybe representing primary pancreatic malignancy. the gallbladder, spleen, kidneys and adrenals were all good, also the lungs. the liver was mentioned, but nothing conclusive since I am so thin. hopefully there is nothing on the liver connected to the tail issue. If anyone has had this experience, please let me know so I can know what to expect next???? I am seeing my doctor on Saturday and hopefully I will feel more hopef…
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Steve - SLewis7313 - where are you?
by tummywoes- 3 replies
- 8k views
Steve, I am not in the UK, however I began to follow your inspiring story and am curious how you are doing now? I am at the very beginning of the journey and find so much hope in your posts. I am currently waiting for a biopsy and am scared to death My only hope is that maybe, just maybe it wont be cancer. Like so many here, I was so healthy before all this started, now I am a mess, have lost too much weight, pain, etc. also very interested in the enzymes, I am taking Papaya now after each meal. Dr. said it was ok, but I wonder if I could or should be taking something else, maybe a different kind? They certainly wont hurt me and would like to begin anything that …
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- 0 replies
- 7k views
Just to let you know that we used one of these on our recent holiday. It is basically a rubber sleeve which fits over your picc line. There is a small detachable pump which pumps out air and creates a vaccum to keep water out. It is made in the US but distributed to GB from a company in Ireland. Weblink here. http://www.drypro.ie/products/picc-protection/ Size wise probably best to round up rather than down as we did as it made it a bit of a struggle to get it on but it certainly worked. I would definitely recommend getting one if you enjoy swimming. Cathy
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The Stent
by LindaH- 5 replies
- 8.3k views
Hi, How would I know if the stent - which was inserted to help drain away the bile in my pancreas - had ...erm...gone? It was still there when I had a CT scan on May 17th, it's just that I've been experiencing a tiny bit of stomach pain...only really mild....but a bit like it was before I knew I had an Alien in my pancreas. I'm hosting this "Alien" for a little while until someone helps me to kill the b*gger. Perhaps I'm being a bit paranoid. I suppose the tummy pain could be because of the iron tablets I've been taking, after all; it does say on the iron tablet leaflet that ...quote: can cause stomach pain. I was just wondering if I would know that the stent …
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newbie need help plz
by adriancovuk- 10 replies
- 10.6k views
Hi all sorry I have to join you all I will give short history. I am 45 last sept dx with prostate cancer T3 no spread had op at xmas march started two yrs of hormone therapy and was due to start RT. I was also dx with gallstones with abnormal LFT lots of scans later just been told have bile duct cancer and I am scared to hell. Surgeon says whipple plus chemo any help please. Adrian
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update
by LindaH- 8 replies
- 9.2k views
Went to see Mr {name removed - moderator} (my Oncologist) last night & he showed me what was written about the reduction of the tumours....49 mm, down to 33 mm....which in the words of the report from the doctors who performed the scan was "A SIGNIFICANT reduction" & apparently much of it is dead tissue. He was really pleased at the way things are going. HE also said "I am now officially in remission" The only downside is that there is still no possibly cure for me & no chance of an operation coz by the fact that the tumour has travelled into my liver means there is cancer floating around in my body, so even if I was to try & put myself through a gru…
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- 7 replies
- 11.1k views
I was diagnosed with a neuro-endocrine tumor in my pancreatic duct with tumors in the lymph nodes as well. I had a full Whipple surgery performed at MD Anderson Cancer Center in Texas in March. I am still recovering from surgery and go back to MD Anderson for follow-up scans in August. MD Anderson is one of the top hospitals in the U.S. for cancer. I have dual U.K./U.S. citizenship and will be moving back with family in the Manchester/Stockport area next year. What are the best hospitals in the U.K. for follow-up treatment and additional testing to make sure my cancer is gone and no additional tumors have grown in the remaining parts of my pancreas and intestines? …
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Travelling with sharps
by Slewis7313- 10 replies
- 10.5k views
Has anyone any experience with disposal of sharps / syringes when abroad? We are off to spain on Saturday and taking my daily anti-thrombosis (Clexane) syringes with us. I don't particularly want to bring them back with us! Steve
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I'm basking in the news for now
by LindaH- 10 replies
- 11.3k views
My consultant phoned at 7.30pm last night.....I'd heard he works late. I was awaiting the results of a CT scan I'd had May 17th. My hubby took the call, I was shaking too much. The news was.....the tumour in my Pancreas and liver was REDUCING. I am over the moon. It's something I never thought would happen. Steve (hubby) didn't ask by how much, but to be honest anything is nothing short of a miracle when at Christmas last year the Gastroenterologist didn't even give me until New Year to live. I know I shouldn't run before I can walk, but I'm basking in the good news as I was convinced the news was going to be bad, that it had travelled into other organs or someth…
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Dizziness
by LindaH- 6 replies
- 10.4k views
Hi, Has anyone else experienced dizziness / light-headedness after Chemo of Cisplatin and Gemcitabine ? If so, does it last long? Do I need to phone my Oncology department? My temp is fine, my blood sugar levels are fine and I've been absolutely fine, until last night when I suddenly felt dizzy. I went to bed and slept quite well, but this morning I am still feeling dizzy. I do know that I have a slight low white cell count (neutropenia) 1.3, so I'm wondering if it is this? Typical for something to rain on my parade..... Linda x
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gem/abraxane
by jdlinder- 4 replies
- 9.2k views
Hello I'm currently on gem/abraxane and just wondering if anyone has added any other chemo's to their regimen. My doctor wants to add GM-CSF. Has anyone done or heard of this?
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White Blood Cells
by LindaH- 11 replies
- 12.7k views
I went for my Chemo this morning and they nearly didn't let me have it.....eek They said my white blood cell count was low. It was 1.3, but they like the count to be 1.5, so they say if it hasn't recovered by my next appointment on 24th, I won't be able to have Chemo until the count recovers. I'm apprehensive about going without Chemo, I'm worried the tumour will also recover which I didn't want. Is there anything I can do to boost my white blood cell count? People recommed B vitamins which I alreday take, Royal Jelly, Folic Acid, red meat and cauliflower. I would certainly appreciate any comments please? Thanks Linda
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Preparing for the future
by LindaH- 7 replies
- 9k views
Hi I went along to x (edited-moderator this afternoon, for the second opinion on my tumour. Am I pleased I went...yes I suppose so, but no miracle, no cure, not for me. Putting it straight, everything that is being done at the moment is exactly how it should be. The chemo Cisplatin and Gemcitabine are the ones they would have used to treat me, so basically everything that is being done for me at my local hospital is fine. The fact that my tumour is an 'unusual' tumour is the major factor in the success of the chemo. Because there are no statistics, they really do not know how successful the chemo will be, so I'm playing a waiting game here. Another major fact…
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Worried about poss line fitted 1 2
by LindaH- 33 replies
- 32.6k views
Hi, It's getting increasingly difficult for the medical team in the Oncology department to find a vein in my hand to insert the cannula into the back of my hand. At the moment I go for treatment two consecutive Friday's then fourteen days off. My veins are not particularly good as I invariably need to run my hand under warm water before they are able to encourage the vein to the surface, coupled with the fact they are only able to use one hand because of lymph nodes removed when I had breast cancer in 2007. I'm now worried they will want to insert a line under the skin in my shoulder. I don't like the sound of it at all. Does anyone have experience of this li…
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Help to understand please?
by LindaH- 3 replies
- 8.1k views
When I was first diagnosed back in December and the tumour was contained within the pancreas it was thought I would have Chemo to hopefully reduce the tumour or stop it growing and then Radio to kill it. Unfortunately, since then - December, the tumour has spread into the liver and now my consultant informs me Radio cannot now be used as it wouldn't work to kill the tumour in the liver as it cannot be pin-pointed sufficiently and there are other reason which I cannot recall just at this minute. When it was discovered the tumour had spread into the liver, my consultant at my local hospital didn't seem overly worried, he felt that the Chemo ...if it worked...would al…
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CyberKnife ?
by LindaH- 0 replies
- 6.4k views
May I first say thank you to Jeni for making the statement about the German operation clear. Okay, has anyone had experience of CyberKnife surgery on Pancreatic Cancer? I would love to know if anyone has had this type of surgery please, does it work ? Linda http://www.cyberknife.com/cyberknife-treatments/pancreas/how-used-treat-cancer.aspx
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Think I've been naive
by LindaH- 9 replies
- 11.4k views
I went to see my consultant today and I feel I've been a little too naive about my particular kind of cancer....Squamous Cell Carcinoma. I'm going through Chemo at the minute and I thought Radio would follow, but my consultant doesn't think it will benefit me because the cancer has spread into the liver and whilst Radio would kill the Pancreatic cancer, it wouldn't kill the cancer in my liver. I naively thought the Chemo would slow down the growth, possibly shrink the cancer then I could have Radio to kill it, maybe even an op to remove it and all would be well, but it's not like that at all. He said 'if' the Chemo works I would be what he called in remission and th…
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Pian in the b...
by LindaH- 1 reply
- 6.3k views
I'm still struggling with pain inbetween my shoulder blades, which indicates to me that my tumour cannot have shrunk or I feel the pain would subside. I've had my third lot of chemo...lost count how many still to go....don't even want to think about it, but if only little things ...like the pain subsiding ... it would then give me more encouragement. It's such a long drawn out process the whole thing. Oh well not to worry, worse things happen at sea...now where did I put my boat? Linda