Postby RixInPhx » Fri Mar 09, 2012 3:24 pm
Wow, this awful disease is certainly running you through the ringer.
I'm so sorry you're going thru this, and especially now with this new wrinkle.
I know your original Dx was peritoneal carcinamatosis, which is St 4 with the secondary within the peritoneum.
Where was your primary tumor, and what treatment did you have for it?
* You had HIPEC in Aug '11 (7 months ago) with a very favorable procedure and recovery.
* Then you had 3 clear scans (prior to last week's questionable 4th scan), presumably at 2-month intervals (Oct, Dec, Jan).
* Then began mop-up chemo of Folfiri + Avastin about Jan, continuing until this week, to try to prevent rogue tumor cells from establishing themselves (and to suppress unknown potential tumors); at 2-weeks per cycle, you've had about 3 cycles.
A 'standard' course of this regimen would be 12 cycles/6 months, and it isn't very effective after just a few cycles.
* Finally, last week's scan (4th) showed some questionable spots (presumably small, about 4 mm?); you'll know whether they're malignant after the MRI.
The entire purpose of these scans is to see if the HIPEC was completely successful.
Your medical team was rightfully concerned about whether cancer would redevelop or re-establish since that's always a possibly; especially since you were told you were "at high risk for peritoneal spread."
The questionable spots on the liver are a cause for concern, and you are so lucky they were found.
Now your medical team has an opportunity to determine if they are malignant, and to plot a change in course of treatment if necessary.
No spots on liver, lungs, etc. would have been wonderful news, and the adjuct chemo could have continued to the previously-planned cessation (presumably 12 cycles, about July).
Things rareky go as planned with this disease, there are often bumps in the road, and you've encountered a big one; but certainly not insurmountable.
Firstly, as you've been told, the spots might be benign, and all this concern is for nought.
If they are found to be malignant, it is a possibility that your medical team feared, and it can be treated.
Prossibly a full course of Folfiri + Avastin (and maybe Erbitux or Vectibix if your tumor is KRAS-wild) would be effective.
Or the onc might determine that Folfox (5FU/Leucovorin, with Oxalplatin instead of Irinotecan).
Or your medical team might think that radiation would be effective for 4 small spots.
All of this might make the liver condition suitable for resection surgery to remove the spots (if they aren't already suitable for an immediate resection).
THERE IS MUCH HOPE here, please understand that.
Your body hasn't turned on you, your medical team hasn't missed anything, and you aren't out of options.
The chemo hasn't 'failed', and IMHO you shouldn't abandon it.
If these spots are malignant, it's apparent they grew during your time of treatment, Jan-present, since they weren't present at the 3rd scan.
It's possible that adjunct chemo soon enough (*most* patients begin 'mop-up' about 10 weeks after surgery, therefore Nov for you), and these spots were already established (but so small as to not be detected at 3rd scan).
It's possible your tumor is resistant to this regimen, and the other 'first-line' regimen (Folfox) might be more effective for you; or adding the Eri or Vec might be appropriate.
I know you put a lot of faith in the HIPEC, and Dr Sardi is certainly one of the best in the country.
But surgery isn't the only treatment and it isn't always effective, thus the scans), and the fact that it now seems the HIPEC didn't go 'perfectly' is no reason to abandon the fight.
There are other weapons available.
My advice is to get back on the chemo regimen, try to calmly await the MRI results, and then plan a new strategy with your onc and the rest of your medical team.
I wish you the best in your treatment, that you be NED by the end of the year, and that you get the most out of life.
Peace, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192