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Folfiri appears to be working

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

As some of you may remember, I started to have ascites build-up due to my peritoneal tumors. They took off 1.7L about 2 months ago and then 3L one month ago. Well, I went in yesterday after another month and there was too little fluid to try and remove. This very likely means the folfiri is controlling the peritoneal tumors. Still have 4-5 weeks before a CT scan but this is welcome news. The best part is that I'm only taking a 60% dose of irinotecan and still getting results. I'm also only getting an 80% dose of 5FU right now. I'm also on avastin but at full dose. Just wanted to post some good news for a change. 

lilacbrroller's picture
lilacbrroller
Posts: 239
Joined: Jun 2012

Fabulous news!  Glad it's working! Sealed

 

- Karin

smokeyjoe
Posts: 1428
Joined: Feb 2011

Glad it working for you ..... keep up the great news :)

jen2012
Posts: 1132
Joined: Aug 2012

Great Tedd - glad you got some good news.  Hope you are feeling well!

lp1964's picture
lp1964
Posts: 739
Joined: Jun 2013

Keep it up. I just hope that you are handling the chemo well as far as the side effects.

Wishing you further long lasting improvements.

Laz

annalexandria's picture
annalexandria
Posts: 2024
Joined: Oct 2011

I was just thinking about you the other day, wondering how you were doing.  I'm so glad this is helping!

Hugs~AA

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Didn't take my chemo today as bilirubin was 1.9 (normal is 0.0-1.2). I was suspicious that my stent was blocked as I have been seeing signs (light colored stool and orange urine). Had an ultrasound but don't think it will show much. Not sure what the plan is but my NW onc is recommending a MRI of the liver to really see if there is a blockage. If so, we will have to place a new stent. Minor procedure but always a risk of a problem. Main thing is I don't want to be off chemo while messing around with this stent deal. 

Chelsea71
Posts: 1154
Joined: Sep 2012

Great news that the Folfiri is working.  Can't tell you how much I am rooting for you.  Thanks for the update.

 

Chelsea

hippiechicks
Posts: 302
Joined: Sep 2012

Great news on the Folfiri !!! Laughing

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Well it has been a wild ride since my last post. I had some bad nauseau last weekend (week before Labor Day) and started to have some signs of jaundice. Things got better throughout the week but again felt crappy this past weekend. Was scheduled for chemo wednesday but bilirubin was 1.9 so we held off. Ended up in ER because I spike a fever of 102+ on Monday evening. Of course it was back down to near normal when I got to the ER. Anyway, they detected a gram negative rod infection in my bloodstream and my bilirubin was 5.2 and looking like a clogged stent. Did an ultrasound, MRCP, CT scan and X-rays. been on IV antibiotics since Monday night and will get an ERCP tomorrow to really check my stent. Biggest problem has been the vomiting and lack of appetite. Hopefully we can sort this out and get me home soon. 

Nana b's picture
Nana b
Posts: 2648
Joined: May 2009

Awesome! 

Chelsea71
Posts: 1154
Joined: Sep 2012

That does sound like a blocked stent.  Hopefully they will fix it fast so you can get home ASAP.  Will be thinking about you.

 

Chelsea

annalexandria's picture
annalexandria
Posts: 2024
Joined: Oct 2011

I hope they get you fixed up and home soon.  Keep us posted.

lilacbrroller's picture
lilacbrroller
Posts: 239
Joined: Jun 2012

Hang in there, Tedd!  Hope you feel better soon.  

 

take good care

 

KarinSmile

UncleBuddy
Posts: 417
Joined: Aug 2013

Sounds like things are looking better. I hope you start feeling much better soon.

UncleBuddy
Posts: 417
Joined: Aug 2013

I'm glad things are looking up for you. Feel better soon!

Lin

lp1964's picture
lp1964
Posts: 739
Joined: Jun 2013

I can't imagine what you are going through even though my third Folfox is kicking my butt too. We have to hang on, because if you really look there is a thousands of reasons to live for and no reason to die, right?

I keep you in my heart and share your struggle.

Laz 

Annabelle41415's picture
Annabelle41415
Posts: 4112
Joined: Feb 2009

Sounds like things are moving in the right direction which is a good way to go. 

Kim

Sundanceh's picture
Sundanceh
Posts: 4252
Joined: Jun 2009

Get Well, Tedd!

Hope you get to go home soon...

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Looks like I may get to go home tomorrow. They will keep me on IV antibiotics for a week or so after I go home. Bilirubin was down to 2.5 today. They ended up putting a new stent inside the old stent and confirmed infection at the site. I'm ready to get home after a week in the hospital. So boring and I had no energy to really do anything. Only concern now is that my potassium was a tad low this am so I am taking a bag right now. I have been having trouble eating with the nauseau, medicines, some constipation, etc ...

emma_s's picture
emma_s
Posts: 22
Joined: Mar 2013

Tedd, I've been following your posts since April and found you’ve been through so much. I wish you get better soon.

 

I’m wondering what are the test results of KRAS and BRAF mutation of your liver? Are they the same as your primary tumor?

You mentioned in your one of your previous posts that they’re going to biopsy one of your liver tumors.

 

As far as I know only 3 to 4% of people have them different and Erbitux could be considered then.

 

 

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

We talked about biopsying one of the liver tumors but haven't done it yet. Maybe when I go for additional ct scans around early-mid October. Those may be delayed due to this infection and missing 2tx of folfiri. I did get a ct scan while in the hospital this time but not sure how much they can tell from it (not specifically done to monitor tumor progression).  

janderson1964
Posts: 1344
Joined: Oct 2011

Stay strong my friend. I know you are a real strong dedicated fighter.

hippiechicks
Posts: 302
Joined: Sep 2012

Wishing you all the best! Sounds like they have gotten things moving in the right direction.  Glad to hear and will be sending postitive energy to you!

 

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