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I was diagnosed with PC on 4th December 2012. It was at that time inoperable as it intimately involves blood vessels and the surgeon commented that there is only a slim chance that treatment would change the situation as far as surgery went. I immediately started on CREONS and my weight loss (2.5 stones in 2 months) stabilised and has not moved since then. Christmas was a struggle as we all agreed to make it as normal as possible, but there were moments where this was easier said than done. My wife, daughters and their partners have been really supportive even though it has been as difficult for them as spectators to see me go through the challenges of this thing. I have just completed my second cycle of chemotherapy with two more to go before we start radio-chemotherapy. Since starting chemo, my general well being has improved, along with my appetite and taste for beer. The staff at the hospital have been outstanding and the only problems I have encountered are a rash (which stopped the chemo for one week) and hardening of the veins in my right arm. I am now well enough to have gone back to full time working (from home) with my tumor marker dropping substantially. I know that feeling pretty normal is in some ways misleading as the tumour is still there and still in a difficult place to eradicate. However, for now I am lucky enough to feel well and know that everything that possibly can be done is being done. I feel very positive at this time and hope that the surgeons will report a more positive prognosis in the summer once the chemo and radiotherapy are complete. Reading other stories, I am probably in a better place than many but at the same time realise that the challenge for me starts in the summer when treatment is complete. Whichever way my story goes, I wish all others in this forum the very best and can confirm the fingers are crossed for myself and you.

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  • Slewis7313

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Hi Slewis,


In so many respects - even to the date of your diagnoses, mirrors more or less my situation. Mine is inoperable, though mine is also a rare tumour which is why I am only just starting my Chemo, having just had my second session of Cisplatin and Gemcitabine yesterday, so mine should finish around June of this year.


I also started Creons and immediately began to feel the benefits of the drug again whilst trying to make life seem as normal as possible and like you say, it is easier said than done.


I am hoping to move onto radio-chemo somewhere along the line and this is where my consultant seem to think he would be able to 'put' me in remission. I spoke about the posiblity of an operation and this is something I will strive for as a means to an end with this awful disease.


I was also diagnosed with Breast Cancer DCIS in 2007 and recovered well from that with a complete sign off of good health. This cancer in the pancreas hasn't come in as a secondary, it is a primary...so the flippin' thing is after me...but it won't get me.


I must admit, other than the days when the chemo takes over, I've felt pretty well, doing everything I would normally do ....except....and I admire you for this....going back to work....no work is a four letter word to me, having said that I did work in a Primary school, so it wouldn't be a good idea for me to be amongst children who bring along their runny noses to school with them.


Thank you so much for your good wishes, I feel so privileged how people are so willing to take time out of their busy lives to wish us well, it is heart warming.


Like you, the summer will be the turning point for me and lets both hope it will turn to the good.


One thing I did decided to do, even though I am very pleased with the help the team at my local hospital are giving me, I have also written to XXin Manchester just basically to ask if any specialist would be willing to help me a little further down the line and a consultant at XX has expressed an interest in my situation, so the wheels are in motion to chat and for heads to get together.....


It's heart breaking this blessed cancer thing, it's nasty, but I had to laugh the other day when I went to see my Diabetes team, the nurse told me....very informatively, whilst we chatted about my oncoming chemo...."Do you know what the biggest killer is in todays world?".....

I replied "No".....

She said "Believe it or not, it's not cancer and it's not heart attacks, it's Diabetes".....

I looked at her and said "So if one doesn't get me, the other sure as hell will"

Poor girl was mortified when she realised what she'd said....we laughed about it.


We have to laugh don't we.


Take care

Linda

Edited by LindaH
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Why oh why did I not post here earlier? Just 'speaking' to one person in the same boat as me is good. I too have arranged for a second opinion after my next CT scan as I know the NHS has limited resources and I may be able to draw on private health insurance (though it is sad that I even need to consider this option). I, like you have no intention of sitting back and letting it happen, but accept that it may be a battle I simply cannot win...... Only time will tell, but I am certainly up for the fight!


Thanks for responding and good luck!




Steve

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Hi Steven and Linda - I just wanted to say how uplifting it was to read your posts. Be sure we (this wonderful forum family) are behind you every single step of the way, have your back in your daily battle and are sending you a million positive vibes to keep you focussed and strong. I am so happy to see that sharing your experience with one another has helped and long may your inspirational fortitude continue.

With much love

Deb

x

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Slewis7313 wrote :

> Why oh why did I not post here earlier? Just 'speaking' to one person in

> the same boat as me is good. I too have arranged for a second opinion after

> my next CT scan as I know the NHS has limited resources and I may be able

> to draw on private health insurance (though it is sad that I even need to

> consider this option). I, like you have no intention of sitting back and

> letting it happen, but accept that it may be a battle I simply cannot

> win...... Only time will tell, but I am certainly up for the fight!

>

> Thanks for responding and good luck!


Go for it Steve. There's nothing to lose by asking other opinons and with medical advancement being given to Specialist Centres obviously they are going to be the places in the know.

I don't want to die Steve, I haven't got the time to die, far too much living to do, so I will fight like crazy to win this battle. I'm 59.


I want to see my 21 year old daughter fullfil her career as a Physio. I would love to hold grand children and I want to see many, many more Springs , Summers, Autumns and Winters, so let's give this bl**dy disease a run for its money Steve.


Good Luck to you too.

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DRAD3 wrote :

> Hi Steven and Linda - I just wanted to say how uplifting it was to read

> your posts. Be sure we (this wonderful forum family) are behind you every

> single step of the way, have your back in your daily battle and are sending

> you a million positive vibes to keep you focussed and strong. I am so

> happy to see that sharing your experience with one another has helped and

> long may your inspirational fortitude continue.

> With much love

> Deb

> x


Bless you Deb, always here with words of encouragement which are so appreciated. Linda x

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Thanks all for the amazing words of support. I've checked out the Manchester clinic which looks really interesting. It will certainly be an option if I hit a brick wall. However, tomorrow's chemo has been deferred by one day to allow me to have a kidney test as a pre-requisite for radiotherapy. Also have a date of 4th April to be 'measured up' for the radiotherapy machine. They seem to be doing all the right things at the moment and I cannot complain about the treatment to date and plans for the immediate future. Let's hope it continues positively for as long as possible.


Take care all


Steve

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Slewis7313 wrote :

> Thanks all for the amazing words of support. I've checked out the

> Manchester clinic which looks really interesting. It will certainly be an

> option if I hit a brick wall. However, tomorrow's chemo has been deferred

> by one day to allow me to have a kidney test as a pre-requisite for

> radiotherapy. Also have a date of 4th April to be 'measured up' for the

> radiotherapy machine. They seem to be doing all the right things at the

> moment and I cannot complain about the treatment to date and plans for the

> immediate future. Let's hope it continues positively for as long as

> possible.

>

> Take care all


Would love to know how you progress Steve if you wouldn't mind keeping me in the loop from time to time. Thanks.

Linda

>

> Steve

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PCUK Nurse Jeni

Dear Steve and Linda,


So great to read your stories, which really are full of hope and zest for life. It is great that we can also have some of these good news stories - ie: being put on creon straight away and weight stabilising, not to mention quality of life. Often, this is not the case. So well done to your care teams, and let's hope the summer, (if we get one!), will bring good tidings to you both.


Great also to hear that you are both going to be having chemo/rad. Very pleased! Good that this treatment is being used more and more for the treatment of PC in the UK.

Onwards and upwards!


KR,


Jeni.

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Thinking back, probably one of the most significant things for me ( though i did not realise it at the time) was the initial consultation with my GP. We were new to the area and I had taken up sea rowing and living at the top of a hill meant even more exercise. My symptoms were constant indigestion which I had been getting for only two weeks. I would have (naively) accepted the weight loss was down to increased exercise, but my GP was most concerned about the weight and referred me immediately to a consultant. Things could have been so very different and I feel more than a little lucky that she acted so decisively.


Based on my experience to date, It is almost incomprehensible to hear just how poorly so many in my position have been treated.... The old 'post code lottery' seems to be quite common with this type of illness.


It would appear that more consistency is needed across the board when dealing with illness, regardless of who your doctor is or what it costs!


Steve

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Thank goodness for your GP's speedy response, Steve. So wish this was more the norm - it would make such a difference to survival stats for this disease.

One thing I would say with regards to radiotherapy post "measuring up" - make sure that you maintain your body weight, if you can. My husband was measured up, tattooed with his target markers, then lost weight - this meant the lining up went out of tolerance and he had to be re-measured which caused a little delay and some upset (we had not realised the importance).

Hope all continues to run smoothly - do keep us all posted, won't you?

Deb

x

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Thanks Deb. I have been concentrating on trying to put more weight on with some success. It is really useful to know that it should stay constant once measured up for radiotherapy, so I will keep a close eye on it. I actually weigh every day and add the detail to a diary which I have maintained from the day of diagnosis. The medical staff are quite amused when I turn up for consultations with a summary of the last Month's progress which includes graphs of weight and all blood results!


I will keep updating this forum on progress as I find it most beneficial seeing other's (eecially linda's) stories and hope mine will also be of use to others, now or in the future.


Take care all

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I have been called for a CT scan on Monday. We will now see if my good feelings are reflected in the size (and position) of that damned thing inside me. Once I have the results, I will also be taking them for a second (private) opinion. No issue with what is being done so far, but just keeping the options open just in case. Treatment is ongoing with another 6 weeks chemotherapy. I am scheduled after that for radiotherapy, but assume poor results from the CT scan may compromise that plan.


As always...... Fingers crossed!



Steve

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Had the CT scan today, which was to review progress and prepare for radiotherapy. Apart from the elusive vein syndrome (for the dye) the scan was without event. However, the timing of the scan was very fortuitous as they discovered a small blood clot in one of my lungs. As a result there were more bloods and an ECG, but after spending most of the day in Hospital it was agreed I could go home after a blood thinnig jab to the tummy. I've been given a supply of the injections to do myself at home until I see my Oncologist next week. They were surprised that I had no symptoms (breathlessness, Pain etc.). I'm just glad it was picked up before it became worse. The staff throughout the hospital were absolutely fantastic today which made a big difference. What started off as a potential knock-back, turned out to be a productive (if rather long) day.


We just need to see what the Oncologist says next week!


A beer is in order!


Steve

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Good luck with your Oncologist next week Steve, you must be longing to get the good results you need. Will radiotherapy all depend on whether your tumour has shrunk and has it to be a certain size before they will proceed?


My understanding of the radiotherapy was it will be this which will completely kill the tumour, but what happens then? Can they then operate to remove what is left? What will be your next step after radio?


I'm just longing to get the chemo over with at the minute, this last weekend has been one of the worst I've know. I went to see my GP yesterday - only for a check-up, but I couldn't talk to him properly because I couldn't stop crying and that's not me at all, I'm normally so strong, but I guess it's all part and parcel of the treatment.


I hope all goes well for you Steve. Your progress will give me all the hope I need to carry on so keep going my friend.


Linda x

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Hi Linda, the illness / chemo or something (probably a combination thereof) certainly gets to you some times quite unexpectedly. After the CT scan yesterday, I suddenly clammed up and my wife did not know what was up with me. Once I had recovered myself a bit, I told her that for reasons I could not explain, I felt that if I started to talk I was going to break down in tears in the waiting room........ 30 minutes later the feelings had gone!! This has happened in the past, but usually when walking the dog on Swansea beach where I have no spectators!!


My understanding for the scan is that as long as the tumour has not grown, the chemo is considered to have been successful. After that, if the associated tests are OK (primarily kidney function) the radiotherapy will go ahead. However, on paper the treatment is still classed as non-curative, but I am hoping that after the radiotherapy the surgical team will review with an open mind and possibly change their original decision. The problem still remains that the lesion is entangled with the major vein and artery which pass so close the the pancreas. I do not believe the radiotherapy kills the tumour, but simply assists with the shrinkage. There is a 2 months(ish) settling down period after the radiotherapy to allow the organs to recover form the rays, after which there is another CT scan before the MDT review again. Until that time, I cannot do any more to influence the outcome so am making the most of the period until then as I feel reasonably well. The test of how strong I am will perhaps be after the MDT get together. I am however going to get a second opinion as soon as I have the results from yesterday's scan and probably looking at the Heidelberg option if I get no joy here.


I wish you all the best with your situation and hope the sickness improves soon.


Take care


Steve

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Hi Steve - good news about picking up on the blood clot. My husband had the same problem (clot in the arm near the site of his PICC line) and also had to administer daily blood thinning (clexane) injections. Just some advice about that - vary the spot you deliver the injection as repeated injections into the same spot can make it very sore and bruised. Also make sure you review this with the doctor as we didn't and had continued with them for quite some time to find that it was only short term and this later affected his blood count. No-one had remembered to tell us to stop and it didn't occur to us to ask! It might be different in your case, but just suggest you check.

You and Linda are doing incredibly well and are understandably having moments when you feel overwhelmed by it all. I rarely saw my husband upset but I know he went off on his own, like you Steve. I was like Linda - would erupt at various times - I would completely lose control - its impossible to hold all that emotion in.

So proud of you both and how you keep each other going - right behind you.

Deb

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  • 2 weeks later...

Well today is the day! 4 months since the first CT scan / diagnosis, 3 months of chemo and my review today with the Oncoligist of last week's CT scan. As my tumour is in the 'uncinate process' (what a name for a piece of anatomy!) it is the closest part of the pancreas to those damned blood vessels. My tumour marker has been dropping (last one was 62) and I feel better, so I hope for good news today. The big question is whether the thing has shrunk and if yes, does it show any signs of disentangling itself from the blood vessels. As long as the tumour has not grown in size, I will be put forward for radiotherapy and am already scheduled for various tests in preparation.


Watch this space!


I'll update later today.


Take care all


Steve

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PCUK Nurse Dianne

Best of luck for today Steve,


You have been quite motivational for other 'forum family' members, sure I speak on behalf of everyone, wishing you well today and we hope to hear positive news.



Best wishes,


Dianne

Support Team

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