Paul from Perth

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Yes he seems so upbeat, or at least as much as he can be. The suffering and ordeals he's had since the first surgery are just working themselves out and now back in a few weeks to do it again, it's scary to think of. I wish the best for him, hoping the peripheral nephropathy doesn't return and that the stoma reversal will help his outlook. Amazing they actually put another surgery like that on the table!
 
LeonorG said:
I feel so bad for him. He believes this will cure him. But why? He had a recurrence quite quickly after the surgery.
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I think the doctor said after the first op, that they couldn’t be sure they got it all out. Bodies are weird, it could give him longer or be a cure, but it’s better to be positive, especially since the guy was looking at ending his life not long ago.
 
dreamteam1 said:
I think the doctor said after the first op, that they couldn’t be sure they got it all out. Bodies are weird, it could give him longer or be a cure, but it’s better to be positive, especially since the guy was looking at ending his life not long ago.
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It could but how likely is it? The recovery from his first MOAS was beyond brutal.

He is no longer looking at ending his life cause he is no longer in daily pain.
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I knew her story from her IG.

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LeonorG said:
It could but how likely is it? The recovery from his first MOAS was beyond brutal.

He is no longer looking at ending his life cause he is no longer in daily pain.
---
I knew her story from her IG.

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I don’t think any of us can say, but it’s obvious why someone would want to try, actually he didn’t qualify for assisted dying but he obviously in a far better place.
 
I'm very confused by Pauls latest thread.
I have always liked Paul because he explains things and he comes across as educated on his own disease.
However he's thrown me.
The surgeon is hoping further surgery will cure him? It didn't cure him the first time round so why would a second surgery? Microscopic disease is always possible.
His current disease came from his appendix. Errr yes all his disease came from the appendix.
Surgery to possibly buy time? Yes. Surgery to cure him? It will be many years before that could be claimed.
 
Saydee said:
I'm very confused by Pauls latest thread.
I have always liked Paul because he explains things and he comes across as educated on his own disease.
However he's thrown me.
The surgeon is hoping further surgery will cure him? It didn't cure him the first time round so why would a second surgery? Microscopic disease is always possible.
His current disease came from his appendix. Errr yes all his disease came from the appendix.
Surgery to possibly buy time? Yes. Surgery to cure him? It will be many years before that could be claimed.
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Thank you! It's very confusing. He seemed so convinced that it will work this time despite it already not working once. He did not explain why he had that feeling, whether they told him something. Of course they are hoping for the cure, they always are but that doesn't mean that it will happen.

Yes he seems very educated on his disease and is usually great at explaining it.
 
Saydee said:
I'm very confused by Pauls latest thread.
I have always liked Paul because he explains things and he comes across as educated on his own disease.
However he's thrown me.
The surgeon is hoping further surgery will cure him? It didn't cure him the first time round so why would a second surgery? Microscopic disease is always possible.
His current disease came from his appendix. Errr yes all his disease came from the appendix.
Surgery to possibly buy time? Yes. Surgery to cure him? It will be many years before that could be claimed.
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He seems to think that they just missed a few spots last time and this will clean it totally up and then he will be cancer free. I just worry about him post op because he seems to have a lot of complications and psychological issues.
 
TryingMyBest said:
He seems to think that they just missed a few spots last time and this will clean it totally up and then he will be cancer free. I just worry about him post op because he seems to have a lot of complications and psychological issues.
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After his last major surgery he was critically unwell for a long period of time and you are right, mentally he wasn't in a good place. He is very brave to be going through another major surgery. I do hope it gets him back to NED, but I don't think Paul will ever be cured. Thats just my opinion.
 
Paul had his surgery. Caroline says that his PCI level is very high, sadly.
This is what I found about it:

What is the PCI score?
The peritoneal cancer index or PCI score is used to quantify the extent of peritoneal cancer spread for pseudomyxoma peritonei (PMP) and other peritoneal surface malignancies. It provides an objective measure of overall tumour burden to help guide treatment decisions and predict prognosis.
About the PCI Score
The abdomen and pelvis are divided into 13 regions. Each region is assigned a score of 0 (no tumour), 1 (tumour 1-5 mm), 2 (tumour 5-25 mm), or 3 (tumour >25 mm). Scores are added for each region to get a total PCI.

1723078745698.png

A lower PCI, around 10-20, indicates limited disease spread and is associated with a better prognosis. These patients are optimal candidates for cytoreductive surgery and hyperthermic intraperitoneal chemotherapy (CRS/HIPEC).

A PCI of 20-30 still represents potentially resectable disease for some patients. Neoadjuvant chemotherapy may be used before CRS/HIPEC to help shrink the tumour volume. Outcomes begin to decrease more rapidly above a PCI of 25.

A PCI above 30-40 typically means the cancer has spread too extensively throughout the peritoneum to be fully resected surgically. Palliative management focusing on symptom relief usually provides the best option at this point rather than cure-directed treatment.

Some studies use PCI categories of: 0-10 (very limited), 10-20 (limited), 20-30 (moderate), and over 30 (extensive). These provide a simplified way of stratifying patients into prognosis groups to help guide treatment decisions and set goals.

Changes in PCI over the course of treatment and follow-up indicate how well the cancer is being controlled. A declining PCI shows the therapy is working, while a rising PCI suggests progressive disease and treatment failure. Close monitoring PCI is used to detect recurrence early.

Retreatment like repeat CRS/HIPEC may be options if PCI increases after initial definitive treatment but still remains within a potentially resectable range, especially if good response was seen initially. Multiple procedures are sometimes needed over the course of management and survivorship.
 
Saydee said:
After his last major surgery he was critically unwell for a long period of time and you are right, mentally he wasn't in a good place. He is very brave to be going through another major surgery. I do hope it gets him back to NED, but I don't think Paul will ever be cured. Thats just my opinion.
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Didn't he have a really, really high score before the first surgery. I feel really bad for him if this doesn't go well. I hope he at least got the ileostomy reversed.

I watch a woman named Nicole (feastmastress) and she had to go on hospice this week. She's battled Stage 4 colon cancer for 5 years. I need to stop watching the cancer channels.
 
TryingMyBest said:
Didn't he have a really, really high score before the first surgery. I feel really bad for him if this doesn't go well. I hope he at least got the ileostomy reversed.

I watch a woman named Nicole (feastmastress) and she had to go on hospice this week. She's battled Stage 4 colon cancer for 5 years. I need to stop watching the cancer channels.
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No, they couldn't reverse the stoma.
 
This poor guy just can't seem to catch a break. The thing I feel the most sad about this is that he mentioned in another video that he could no longer handle going from feeling "the highest of highs" when he gets hopeful news to "the lowest of lows" when things go badly and it looks like there is no hope after all. His last hospital stay caused his depression to get so bad that he was having suicidal thoughts, so I can only imagine he agreed to go through this again because he thought it'd really help him. Having such lousy results had to be a huge blown in addition to the misery of a long hospital stay.

I also feel really bad for Caroline. She's definitely an amazing friend with all she's done for him and continues to do. He's likely one of the most important people in her life so it's got to be terrible to go through all this.
 
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