irishmac
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A final update and a good one-
My Dad got told this week that he has autoimmune pancreatitis.Of course it’s a chronic illness but is very much treatable. Hopefully this closes what has been a very tough three months for our family.
Thanks to all here & keep up the fantastic work.
Lainy thanks for your reply.
My heart is broken ……
Yes I have but we live in such a small (wee) countrty that isn’t so easy. You guys have more options that way,
Right now I feel the science is the science and our efforts are best focused on alternatives.
Good evening all.
An update-
They attempted Whipple last Tuesday but couldn’t proceed. The pancreatic tumour had invaded the nearby large blood vessels. They did a bile duct bypass instead.
As we know it we are looking at a Stage 3 or T4 , N? , M0.
The doctors are talking about 6 -9 months or +3 with chemo.
Hope is very thin on the ground here.
Personally I think chemo for pancreatic is like throwing petrol and a match on a person who’s body is already on fire. And maybe even wider than that across other cancers. Am looking at alterntative options.
Will look at the other boards here.
HELP I guess.
Hey again.
My Dad saw a gastroenterologist at the Mater Hospital (Belfast) today and got the following info.
I haven’t spoken to him yet so the info is second hand and I guess I’m a little bit cloudy.
He got told to park the good news I shared and has to go for surgery (I know that’s a good word) on Feb 23rd.
They want to temove his bile duct for sure and (potentially) remove part of his stomach & pancreas in a seven hour procedure. And do the work I’ve read of but can’t recall right now to compensate for the removal of the bile duct.
They said there was a tumour somewhere but they aren’t sure and that there are things they can’t see on scans so they need to go in for a look.
Cancer of any sort was not confirmed but is a real possibility. They advised 2 weeks recuperation post-op and potentially chemotherapy.
I have all sorts of questions and lots I don’t understand right now. Most notably why remove his bile duct in total if the biomass was not malignant?
This consultant saw two other men today & told my Dad whilst it might not feel that way he’s one of the lucky ones.
My sister made a good point in that they are talking about what they can do not what they can’t do.
Any advice or input appreciated.
Hi Sandie. I got a good NI contact through Helen @ AMMF and some good news for now at least.
Thanks for your reply. I hope you are well.Thank you all. We are still waiting on the next step. I will be back to update hopefully with good news.
Today we got news. A letter was issued to my Dad on the 29th but still hadn’t arrived today with the holidays.
He got a call this evening telling him that the bile duct mass was not malignant. He forgot to ask about the gall bladder polyp but as it was not mentioned the assumption is that it was ok. They appeared to give the all clear on his liver saying it was normal and the fuctions were improving.
There is still something seriously wrong with him and many Cancer type symptoms that remain a worry. The next area of investigation will be his Pancreas and he will go to the Mater Hospital in Belfast for further investigation.
I have massive issues with the message delivered by the consultant on the 16th of December. She put my parents & us through hell.
But right today today’s news could not have been better and one thing I’ve learnt is take each day as it comes and be thankful if your loved ones are around ; who knows what tomorrow will bring for any of us.
I had never heard of CC prior to the 16th December and it has filled my every waking moment (and some sleeping ones too) since then. This ‘beast’ and the downright human decency & compassion I found here has left an indelible mark on me. I commit to remember all CC patients and caregivers past and present in my thoughts and prayers. I also commit to doing my small part to raise money for the Foundation and the excellent AMMF in the UK.
I came here to educate myself and prepare for the worst whilst hoping for the best. I did that in a very limited way and had prepared my brother to support my parents as I thought later in the week as well as having a ‘Plan B’ (SIRT).
I have to call out three people in particular – Marion , Lainy & Gavin. THANK YOU.
Gavin wrote:Mac,Helen at AMMF will be of great help to you in seeking any treatment options etc that are specifically in the UK. And without wanting to put words in her mouth or anything like that I am sure that she would be very keen to help you if she can.
Gavin
Gavin I mailed Helen via info@ammf.org.uk quite a few days ago but have heard nothing back yet. Of course the time of year might be a factor. Is this the best way to get her?
Update 3th Jan. Got a really helpful reply and the good news is that there’s a guy in Belfast Helen personally recommends. So pleased about that as I’m not sure Dad or Mum are up to cross water travel and all that that entails. Thanks again Gavin. Out of all this darkness it’s lovely to come across so many genuinely good and caring people across this world of our’s.
Hi both. Dad is still pre -DX so no chemo.
The body being sick thing makes sense .
Dad seems to start the day with a normal reading and rises with the one around 5/6pm being sky high.
I understand the anger fully and the lack of hope re a New Year. The other day I found myself shouting and swearing in the car whilst driving on my own.
I wish you both well in the fight. I’m just taking each day as it comes happy that my Dad is still with us.
If only it was as easy as slaying a beat. I did mean beast.
Hoping and praying 2016 will bring my family some form of good news.
Thoughts also are with all those affected by CC as we approach a new year on this side of the world.Thanks all.
Dad is a bit better this morning.
MY plan is to get him the local diagnosis and then get him to King’s College , London. We are looking to progress potential ERCP/stent issues today.
Is a delay for diagnosis from biopsy on the 22nd until now normal? The holidays haven’t helped us for sure. As of now I have no expectation we will hear before next week.
Scott apologies for delayed response & thank you.
Gavin I am going to reach out to Helen this morning. Right now MY plan is to get the local diagnosis but get Dad to King’s College London. Seems to be his best bet and gives us the best chance to ‘slay the beat’ to steal Scott’s phrase.
