hollandg
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Sarah
Words fails us when we wish to express our feelings to people we have never met and live in another part of the world.For what its worth……..you are in our thoughts and prayers as you seek to fill the void left by the passing of John.
Look after yourself………..Gerry
Rick
I would not be too concerned about the statistics you read (which I admit are alarming at times), CC typically effects older people who may have underlying medical conditions which skews the statistics. Out of the total population of CC patients, it may be worth identifying those patients that are like you; Young – at 32 your quite young to have CC (I’m 49 and I consider myself young) and responsive to treatment (your tumour reductions and disappearance of some mets is very encouraging).Lisa is right – don’t be worried about the stage, focus on the fight – have the best team of medical professional in your corner and seek/maintain the support of your family, friends and work colleagues.
Keep us posted on how your doing.
Gerry
You have given me lots to consider and other options after I chat to surgeon again.
Kris……good luck with fight with leroy and junior – I’m backing you all the way.
Gerry
Lainy/Marion….As regards your queries concerning the necessity for chemo, I wish to clarify the treatment plan adopted by the Surgeon – the chemo is entirely for preventative reasons, to treat the tumour while we wait for the inflammation in the pancreas to clear and proceed with the whipple operation. There is no back-log in the health care system or any other reason for the 4-month delay. I suspect the Surgeon is concerned that if he were to bring forward the operation , the inflammation would not have cleared and another unsuccessful attempt to remove the tumour may be a backward step.
Like you, I would prefer to go ahead with the operation much sooner and I have now decided to go back to the surgeon and discuss bringing the operation forward, (which may eliminate the need for chemo). I’ll keep you informed and thanks again for your queries/concerns as it helps to inform my opinion when I next meet the surgeon.
Take care……….Gerry
Thanks all….Lainy, I hear what your saying regarding the importance of getting the operation completed as soon as possible. I’ve already got the surgeon down from 6 to 4 months and I’ll keep pushing him to get it completed as soon as possible.
Gerry
Gavin
My deepest sympathies to you and your Mom. You have been an inspiration to me as you stood side-by-side with your dad in your struggle with CC over the past months. I’m so pleased his death was peaceful and you were with him at the end.Gerry
Hi Michael
Sorry I can’t help you regarding the treatment you describe but it seems to me your doing all the right things to support your Dad. You seem to have a good team of medical professionals supporting you and you have expanded your own knowledge as well. This site is great – full of supportive people with direct experience of this desease. I was diagnised withh CC about 6 weeks ago and I have a whipple operation on Thursday. Keep us advised of your Dad’s progress – we all benefit from each other’s experiences.Gerry
Kristi
Keep the best side out – we are all with you here. In this terrible struggle, (that impacts on families/carers as much as patients) your sister is lucky to have you.Take care……………..Gerry
Thanks Lainy,
Teddy seems to be a bit of a “scrapper” and I’ve no doubt he will get through his current challenge with you in his corner. Thanks for outlining his history and current regime…..its helpful to have some idea of what may lie ahead. Also, its re-assuring that our surgeons “talk the same”, particularly since there’s a few miles and the Atlantic between us – I’m Irish by the way.Take care
Frogspawn
No need to be concerned – CC has visited two close members of your family and it is only natural to be angry with the desease. This experience gives you a unique (but painful) perspective on CC and many more members of this club will benefit from this. I’m the same age as your brother (49 at Xmas) and I’m interested in his experience – the unvarnished truth is always best where CC in concerned. I had my first stent fitted 6 weeks ago and it was replaced this week (the pain was something else). I was disappointed that it lasted such a short time as I have surgery scheduled for the end of the month. My circumstances are similar to your brother’s – the operation I require is a “whipple” but my surgeon has cautioned me, that while all the possible tests have been completed, he will only make a final diagnoses when he has a “birds-eye view” during surgery.Take care…..Gerry
Irene
That’s an invaluable piece of advice for anyone using this site – thanks Gerirenea wrote:Hi —
Just some info from personal experience about the surgery. The more opinions you get, the better — there are some docs who are much more willing to be aggressive with difficult tumors than others. That being said, there are, unfortunately, many many reasons why surgery cannot work or even when it fails (as it did in my case.) In my case the primary tumor is wrapped around the portal vein, and the chances of removing the tumor without damaging the portal vein — which is necessary to sustain life — is slim. They are ways to “create” things like portal veins, but they are terribly risky and not too dependable (although things are always improving.)
There is also the concern over the size of the tumor and if it intrahepatic, how much liver needs to be removed. While the liver can amazingly essentially regrow itself, it CANNOT regrow the vital veins and arteries that get removed during the surgery, so the liver does not ever function normally again in many cases.Anyway — don’t mean to be grim, but wanted to share my own experiences. There are many of us on the board who went in for surgery and woke, only to find that the surgery failed.
Take care,
Irene
