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My Journey So Far


Lee W
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Hello, 
I have been reading the contents of these forums since my diagnosis of locally advanced pancreatic cancer in December 2021, I am 65 years old relatively fit male my tumour measures 3.9cm and is in contact with 20% of my portal vein.

 

I started a 12 cycle regime of Folfirinox chemotherapy in March of this year, I have had a really bad time with the chemo right from the first cycle I was getting pain and discomfort in both armpits, which started 24 hours after my chemo and didn't go away until 5 or 6 hours after the 46 hour pump filled with Fluorouracil was removed, I got an infection after my third cycle, which resulted in two weeks in hospital and the removal of my picc line until The infection had cleared from my body, after the infection was gone I had a new pic line and resumed my chemo, but on the sixth cycle the pains which were usually confined to my armpits were across my chest I honestly thought I was having a heart attack, my chemo was suspended until I had a ECG and blood tests which revealed that I hadn't had a heart attack but I was having a bad reaction to the Fluorouracil.

 

My Oncologist arranged for another CT scan which shows the tumour has neither shrunk or increased in size, I went on to the seventh cycle of chemo without the 46 hour pump and everything was fine, but my oncologist didn't think chemo would be effective without the Fluorouracil so referred me back to the surgical MDT, things got a little hectic after that I received phone calls to come in for both MRI and CT scans then a pre op assessment all within a two day period.
 

This all happened last week but I already knew while all this was going on that it wouldn't result in surgery as the consultant surgeon had told me way back in December that the cancer was inoperable while the tumour was in contact with the portal vein, anyway the upshot is the MDT at the University teaching hospital who will be doing the surgery have asked for a second opinion from another MDT at Q.E. Birmingham due to the fact that surgery will be complex and will involve resectioning to my portal vein has anyone else reading this know of or had this type of surgery? My oncologist I informed me that I will know the decision of the Birmingham MDT in a couple of days I will keep you posted once I know what is going to happen.

 

I was today given the option to either stop my chemo or continue in the knowledge that without the Fluorouracil I would only be getting 50% of of the treatment, I chose to continue with the chemo as I figure 50% is better than zero, thanks for taking the time to read this and I hope to catch up with you soon.
 

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Sandyvon

It sounds as if the cancer hasn’t spread beyond your pancreas? If that is the case, the chemotherapy that you’re receiving maybe stopping the spread. 
 

The Whipple surgery sounds very complicated. 
 

Best wishes. 

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Lornacath

Hi Lee, wishing you the best on your journey, it all sounds very unpleasant but if it prolongs your life then it will be worth it. Unfortunately non of us have a crystal ball and it is probably going to be a bit of an ordeal for you but it’s an option with some hope for the future. Thinking of you x

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Lee I wish you hope in your journey of fighting this disease. My brother 74 was diagnosed July 2019 and had a similar sized tumour on his pancreas. A fit healthy man non smoker and non drinker. He just turned jaundiced the day before his op. He was given the op of the Whipple procedure and in the operating table by Sept 17th 2019. It was an 8 hr process I was with him on that hospital stay daily and can say he was made most comfortable and he felt very lucky at the opportunity. He didn't complain once apart from progress of a leak from which he needed a drain and eventually that dried up to get home by mid December. He was up walking around very soon after his operation. His strength went upward and onward sufficiently to recover from that operation. Within a month at home he was only complaining of a lumpy scar. We felt sure it extended his life for a good 21 months. 

I hope you do find the courage to trust the surgeon and his advice. Thinking of you. 

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LacksLipase

Hi Lee, I've just joined this site and saw your post. I was diagnosed with a 2.2cm pancreatic cancer in December 2020 and had Whipple's surgery with resection of a section of superior mesenteric vein due to microinvasion. The surgery is major but not as bad as I was expecting, pain control was excellent and I was discharged on day 8. I had gemcap chemotherapy for six months post op and am currently very well. It sounds like your cancer may be more challenging to resect but if it's a possibility I would recommend you seriously consider it. Very happy to answer any questions (if I can!) And wishing you all the best

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Just received an email for an appointment with the liver surgery department (I know it confused me to but the liver surgery department includes pancreatic cancer) at Queen Elizabeth Hospital Birmingham, I will let you know what transpires.

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  • 2 weeks later...

Well I had my Pre Op assessment today, l had 4 separate appointments with different specialists in the liver surgery department and the upshot is that I will be admitted to hospital on this coming Monday morning to have re-sectioning of my portal vein and a whipple performed on me shortly after admission, I have to say that I am a little apprehensive about the surgery but it's has to be far better than not doing nothing.

 

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Hi Lee.  My very best wishes for next week. It sounds like the surgeons think there's a very good chance of success in your case, something we'd hoped would be possible for my husband.  Keep us posted on your progress. X

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Floofmom

Good luck Lee.  Hope all goes well and that you make a speedy recovery from the op.

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