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It's back!


Pete12
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It's been some time since my last post, as things just seemed to'chug along'. But to recap.I had a Whipple procedure on 6th June 2014,and things went fairly well apart from a couple of infections. Things gradually improved until the middle of November last year, when I was admitted to hospital suffering severe pain. This turned out to be another infection, this time on my Pancreas. This seemed to be successfully treated with intravenous antibiotics. However, several weeks later the pain gradually returned, but was just attributed to pain from scarring on my Pancreas, I was put on Zomorph slow release capsules to relieve the pain. The pain increased, and I was given a further CT scan a week ago. I saw the Consultant today for the results which unfortunately showed that the cancer has returned on my Pancreas. The Consultant has reffered me to the Oncology department but no date attached to this. Can anyone give me an indication regarding time scale and what type of chemo may be used. Sorry for the post being a bit disjointed, but I'm still taking it all in.

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Sorry to hear the news, Pete. Unfortunately it's very common that it comes back. I would have thought the main thing is whether they can remove the rest of the pancreas. That has been done before and might be an option if it has not spread anywhere else so do push for a surgical review, not just an oncology review. If no surgery appropriate they will probably consider you for folfirinox which seems to work pretty well for a lot of people. Also worth looking at Cancer Research UK trials lists. there do seem to be a few new things in the pipeline but for the moment you do seem to have options with what is already available.

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The other thing I wanted to say is that recurrence is very common around a year after removal of even quite small tumours give or take a couple of months. The fact that you have made it to nearly 2 years after your Whipples is encouraging even though that is probably not how you feel right now! Fingers crossed that it may not be as aggressive as it usually is.

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Hi Pete,


Sorry to read this latest post. Thank you for posting though, I really hope you get some support through it.


My advice to you at this stage, is to not wait for an appointment to come through. Chase the appointment up. Hospitals don't realise the importance of anything. With experience with this cancer, it waits for nothing, so neither should you. It is your life in their hands. Please chase the appointment up ( or get someone to do it for you, as chasing can be quite a heartache ), the sooner you get an appointment, the sooner you start chemo, the sooner it could shrink. Please chase it.


Leila xx

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Thanks Didge and Catherine for your quick replies. I will mention the possibility of removing the remainder of the Pancreas when I next speak to the Consultant. This makes sense as during our meeting yesterday he did say that it was confined to the original site and showed no evidence of spreading. It's just a case of my head being all over the place at the moment, so I need to gather my thoughts and write some points down ready for my next meeting which should be in a couple of weeks time. He did say that some chemo is useful for pain control, and also for alleviating fatigue. Any ideas which would be best for this as I didn't have any chemo following my surgery in 2014. Once again,thanks very much for your support.

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Sorry Leila. I replied to Didge and Catherine before your post appeared. Based on what you have said, I will arrange for my Daughter to contact the Consultants secretary to see if anything has been put in place regarding chemo. The Consultant did say yesterday that he has a team meeting next week when he will discuss the best way forward so I suspect nothing will be done until then. I must admit it has been a bit of an uphill struggle to get scans appointments etc, but I will ask my Daughter to contact the secretary as soon as possible (she is very strong willed).


Pete.

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Hi Pete,


That is perfect. I think it is hard enough for the patient without having to chase appointments. I was very shy until my Dad was diagnosed and I am now very strong. I chased everything for Dad. When I first joined here myself, someone told me to chase appointments, as with this cancer, there is no time to be waiting. So I did, and was successful. I wasn't angry or shouting but very firm. Most people, do not realise the importance, and not many know about this cancer.

Pleased your daughter is strong willed, I am sure she will get you an appointment very soon. It can be done, I promise. You can also have a note put on your file that you consent for your Daughter to speak to them regarding you. That is what we did and I took over.

We had a biopsy appointment with a 2 week wait. I managed to get it the next day instead. I must have spoken to the entire hospital. Just explaining to them that it is pancreatic can make all the difference.


Leila xx

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PCUK Nurse Jeni

Hi Pete,


So sorry to hear the news that the cancer has come back again.


Have they given any indication as to whether surgery is possible again? Especially if it has not spread, and its been 2 years since original operation? I know that its not the usual practice to operate again once there is recurrence, as they would work on the proviso that if it is back in one place, then there may be other microscopic cells which are not detectable.


What about asking about a PET scan, to see if they can detect anything else? And have your scans been reviewed at the specialist centre by the Multi Disciplinary Team, or by the surgeon who did your operation? I note you mention a consultant, but not specifically if it was your specialist surgeon or gastroenterologist?


You can read up about the different chemos for pancreatic cancer here Pete:


http://bit.ly/1Whex8i


Please do not hesitate to get in touch with us directly if you need further help.


Kind regards,


Jeni.


Pancreatic Cancer Specialist Nurse,

Support Team.


Freephone 0808 801 0707

support@pancreaticcancer.org.uk

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Hi Pete,

Sorry to hear your news, here's hoping you can get some treatment started soon, but as Didge says hopefully it will not be the aggressive form as you have done so well 2 years is a good amount of time. Sounds like your daughter is just what you need to push on your behalf, take care Sandrax

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Thank you all for your information and support,this site is a godsend. Jeni, you mentioned a PET scan, but it's something I've not heard of before. The Consultant I see is the head of the surgical team, so when he said that he would review my case next week at his team meeting I assume he means by the Multi Disciplinary Team? I will contact his secretary early next week to ask about the PET scan option though. Just another quick question. I felt particularly unwell yesterday (Friday) with a temperature of 38.8, but instead of going to A&E as my wife wanted I just went to bed and slept for14 hours. I feel a lot better today, and my temperature has dropped to 37.3. Is it normal for temperature to fluctuate like this? Thank you all once again for your support and information, it is much appreciated.


Pete.

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Hello Pete


So sorry to hear you've had a recurrence. I agree at PET scan is really important for you. My hubby had a CT scan a couple of weeks ago that showed spread to the spine but when he had an MRI scan last week (which gives far clearer images) it showed that his vertebrae had collapsed due to osteoporosis. In order for you to get the best treatment, I think it's vitally important for you to find out if there has been any spread to any other organ and a PET scan should help you there.


With regard to your temperature, I happen to agree with your wife that you should have had some medical assistance, it may well be that you've got an infection brewing. 38.8 I think is high. Can I suggest that you keep taking your temperature today and if it spikes again, call the out of hours doctor. Don't take any chances, if you've got a fever, there's a reason why so get it checked out.


All the best

PW xx

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Hi Pete. I think it will be reviewed in MDT meeting. There the surgeon will put forward his views as to whether surgery is possible and the oncologist will put his view forward as to chemo etc. It may be that a PET scan is then requested (certainly if further surgery is being considered) to see if there is evidence anywhere else. You may have seen the story of Claudie on this site under 'real stories, operable cases' - she had further surgery to remove the rest of her pancreas. Also, we were told that you can attend the MDT meetings, so do ask if you want to do that. Good luck! I don't know the answer to the temperature but keep an eye on it. If is dangerously high always go to A and E but looks like you fought off whatever it was this time.

Didge x

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PCUK Nurse Jeni

Hi Pete,


Yes, sorry to hear about your temperature, but for sure, you need to have this checked out if it starts again, as an infection can also delay the start of chemo, for example. And definitely DO NOT do this while you are on chemo as it could be really dangerous and serious Pete.


PET scans are very sensitive, and will pick up smaller areas of cancer - you can ask about this, and whether it would be appropriate for you to have one - would say yes, but its up to your team ultimately, but asking the question won't do any harm.


Kind regards,


Jeni.


Pancreatic Cancer Nurse Specialist,

Support Team.

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Hi all. Sorry for the delay in responding. Following my raised temperature on the Friday, my temperature went up to 38.4 on Sunday 10th, and as a result I went to A&E where they carried out numerous blood tests and a x-ray. They suspected an infection somewhere but couldn't pinpoint it so I was admitted and put on a drip and oral antibiotics (Co-Amoxyclav). I was discharged the following day with a 10 days supply of antibiotics. I was told that there would be a team meeting later that week (last week) and that a plan would be put together and they would be in touch (no news yet). There have been a couple of occasions in the past few days that my temperature has just touched 38.00, but as I'm on the antibiotics I haven't been back to the hospital. Fingers crossed I hear something early next week, if not I will be contacting the Consultants secretary mid week. It just seems like i'm walking through treacle at the moment.

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Hi Pete


Chase it up please Monday. No-one with this evil disease has time to wait. If they say they'll be in touch, they should be in touch and you shouldn't be left dangling. You want a plan, you are entitled to a plan, so push for that plan!


I'm speaking from personal experience this week, won't go into the details but I got really upset by someone saying oh don't worry we'll deal with it but it needed to be dealt with there and then. Hubby had already waited long enough but unless you've got personal experience of PC, I don't think anyone really realises that time really counts.


Keep an eye on that temperature xxx

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Thanks for the response Proud Wife. Temp at 38.00 this evening and feeling a bit wasted, so will definitely contact his secretary Monday morning for an update. Thanks for the concern and support.


Pete

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Hi Pete,


You really need to be chasing these appointments. Proud Wife is absolutely correct, pancreatic cancer waits for nothing.


Like she says, unless someone has personal experience with this, then you don't realise. I know you probably don't want to be a pain, but you're not being, this is your life in their hands. You also probably think it you keep on at them, then they will put you to the back of the list, they won't, I promise.


The admin staff don't know your situation. You are just a number to them. Call someone please, tell them you have pancreatic cancer and you need things to get moving so you can have treatment and fight. Wish I could do this for you, you shouldn't have to be having this added stress.


Leila xx

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PCUK Nurse Dianne

Hi Pete,


I see you have been given some great support and advice by the forum family. I am sorry to hear your news of recurrent disease, and just wonder if you have the contact details of the specialist nurse whom you have previously had contact with when you had your initial Whipple' surgery. This Health Professional would be the best person to contact, as he/she would most likely be aware of your 'case note discussion' at MDT and also be able to update them with the important aspect of your recent temperatures. Your specialist nurse would also be aware of your previous surgery and progress so be in a great position to 'advocate' for you in this instance.


If you are struggling with any of these issues, please do not hesitate to be in contact.


Regards,


Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer Uk

Free phone: 0808 801 0707

Email: support@pancreaticcancer.org.uk

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Firstly a huge thank you for your help and support. Just a quick update since my last post on Saturday 16th April. Despite several attempts to find out what was happening regarding the plan that was discussed, I couldn't get any further information. Then on Tuesday 19th April I received a call from one of the Consultants team. He basically just confirmed that the cancer had returned, and asked if I wanted to be considered for a course of chemo. I said that I really didn't know enough about it to make that decision. He said that he would contact the Oncology team to arrange a meeting. Having had time to consider this I thought it would be best to speak with one of the specialist nurses. I contacted her on Thursday 21 April. She was extremely helpful and explained the process, and that she would contact the Oncology team to see if anything had been put in place, and would further contact me by Monday 25th April at the latest. Approx 2 hours later I received a phone call from the Oncology department advising me that they have had a cancellation for tomorrow morning at 9.15am and would I like it. Obviously I have accepted the appointment. It is as some of you have suggested, well worth making a nuisance of yourself sometimes, so thank you all once again for your advice.

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Hi Pete


I think it's so very wrong that you had to do the chasing. You shouldn't have to make a nuisance of yourself. Everyone knows the statistics concerning pancreatic cancer so why don't they have any sense of urgency? Sorry but this really upsets me. They've basically kept you dangling for 2 weeks. I know Leila will join me on my soap box here!!


I wish you the very best of luck for tomorrow, do let us know what type of chemo you have and how you get on.


Best regards

PW

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Hi Pete, I do not know your financial situation but if you cannot be operated on then please look into the Nanoknife. It will cost around £14k at the hospital. I am so sorry it has come back, you and your family must be gutted. If you cannot be operated on then just do what you can to extend the time, there is so much in the pipeline at the moment with all cancers. I wish you all the best and keep us posted. x

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