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PET scan results

tachilders's picture
Posts: 313
Joined: Jun 2012

Well, the news was as expected, which is that pretty much every tumor they saw on the CT scan lit up on the PET scan. The SUV values were from 3.6 to around 10.5 which the oncologist said was moderate for uptake. He said he has seen values up to 80 or more so my tumors aren't hyperactive. Unfortunately, this is more evidence that the hallwang treatments did not really help much if at all. I  started folfiri plus avastin today so hopefully that will slow or stop my progression. There was more ascites noted on the scan so I will likely get that removed next week as it can take up the chemo drugs and lead to bone marrow suppression by slowly releasing drug into my system. Looks like I am really relying on irinotecan at this time so I hope it works for me or I may be in trouble. I've always worried about this and it looks like the time to worry is here. Oddly enough I feel pretty good even with the cancer progressing. My liver enzymes are good as are my blood counts so I have a lot of fight left in me. Just have to get the tumor growth back under control or stopped/shrinking. Wish me luck. 

Forgot to mention that I also had a spot light up on a rib but onc doesn't think it is bone metastasis as the CT didn't confirm a tumor there. Either way I'm doing folfiri plus avastin. Waiting on the interpretation from my onc at Northwestern. I'm 13 months into this and have done FOLFOX plus avastin for 6 months then 5 fu plus avastin then Xeloda plus avastin and now folfiri plus avastin. I did have about a 6 week break in Germany where I had TACE (mitomicin C, irinotecan, avastin) and removab. 

Posts: 1170
Joined: Sep 2012

Hey Tedd. Good luck with the Folfiri. It helped Steve a lot. Good QOL while on it. Thanks for the update. Great that your feeling so well. That's what's important.

tachilders's picture
Posts: 313
Joined: Jun 2012

Had some cramping and nausea last night (no vomiting) after the first folfiri infusion, but managed to get some sleep finally.  Now just waiting to see if today brings the diarrhea that is very common.  Yesterday I actually had firmer than normal output due to the pre-meds they give me before the infusions.  Here's hoping the irinotecan works well for me....   

lp1964's picture
Posts: 1240
Joined: Jun 2013

I just wanted to wish you good luck with your treatment.


Posts: 1607
Joined: Aug 2012

Hi Tedd,  I'm sorry things aren't improving but glad you are feeling well.   You aren't catching a break - I hope the folfiri gives you a well deserved break.  I hope you are able to enjoy summer with your family.

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Hoping for a positive response to treatment...

geotina's picture
Posts: 2123
Joined: Oct 2009

I'm sorry the news was not better.  Just keep puting one foot in front of the other.  The new drug can be tough in a different way than Folfox. 

Wishing you the best.


joemetz's picture
Posts: 493
Joined: Nov 2011


thanks a bunch for sharing.

Many of us are in this with you.  Keep up your fight!!!

Don't begin to worry about the cancer... try like heck to set your sites on something or some event or some family occation that you want to see or be at NEXT year!

I have my mind focused on June 1, 2014

my son will graduate from high school, my other son will graduate from College.

After that happens, and I'm still here... I will focus on another family event, that is six months to a year out.

keep up the fight man.

positive attitude. reduced stress. and enjoy the wonder of the wonderful people around you.

thinking of you and pulling for you.

let's do our best to beat this sh#t!



lp1964's picture
Posts: 1240
Joined: Jun 2013

Focusing on a pleasent event further out in the future. What an inspireing thought, even though it's so obvious. This will stay with me for ever.

Thank you Joe.


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