No NED for Tedd-Update below...

Site is better now...with only 10 visitors. What do they say about surgery? I didnt think you could be Ned if the tumor was still there? My husband hasnt had surgery yet but its in the plans after he finishes his 12 treatments of folfox....hopefully that is still the plan. You sound really down tedd..with reason...but keep on fighting. I think you were questioning your treatment recently?? This is probably a good time to go elsewhere to see what other docs recommend.

having also gone through treatment, only to get less than stellar results on my scans.  It's hard to accept and very disappointing.  But the positive side is that the chemo is working, if slowly.  And adding in some of the alternatives could be a great step in the right direction as well.  Sending hope for better results on the next go-round, and strength to help you get there.  Ann Alexandria

One can never know what is around the next corner, so don't dispair.  We all hope for the absolute best with each scan or test.

Take the shrinkage as a good sign, and keep in the fight.

There are those here who have never achieved NED status who are living very well treating it as a chronic illness.

In the mean time, explore the alternatives, but make sure to get OK from onc before investing in things other than healthier eating and life style.

Wishing you more pronounced good results on the next scans.

Marie who loves kitties

tachilders said:

Well, my meeting on Tuesday

Well, my meeting on Tuesday was actually with my oncologist's NP (actual oncologist was out of town), and she was the one talking about the maintanance chemo.  The NP e-mailed me yesterday and said that my oncologist was meeting with the radiologist to go over my scans in more detail, mainly looking to see if some of the tumors may have internal necrsosis even though they haven't shrunk that much.  Also, my oncologist seems to be thinking that I might go right on FOLFIRI + Avastin now, as opposed to maintenance chemo of 5FU + Avastin, which is a more aggressive approach to my treatment.  I should be getting a call from my doc today to let me know what she thinks is best for the immediate future.  I was actually thinking that I would rather try and be more aggressive now with the treatment, since I am feeling good and tolerated the FOLFOX pretty well.  I like the idea of trying to kill these tumors as opposed to just trying to hold the line against them....  I'll update more after I talk with my oncologist at NW.

good plan...

i just completed 12tx folfiri with avastin. i know there can be different responses to the same tx,  but i had a scan after tx # 6 & all tumors except rt ovary had decreased by 1/2. now the onc thinks the ovary has a cyst & not cancer. i has surg dec 2010,  did folfox 6 from jan 2011-july 2011 & folfiri with avastin july 2012-jan 2013. i was ned jan 2011-june 2012.  orig dx was sigmoid colon cancer. this time i was dx  2 abd, liver, rt ovary, & numerous peritoneal tumors.  also on the scan taken after the 6tx, the liver cancer was gone & the large  5.6cm peritoneal tumor was 12mm.  jan 26 i will have a pet then talk again to the onc surg about what type surg i will have. then after 4 months post op i will do chemo again. if you do folfiri with avastin, i hope you have as good or better results than what i have.  good luck & i will be praying for you!

hugs

judy

http://www.demandcurestoday.org/colon_cancer_stem_cell_clinical_trial

tachilders said:

Thanks for the

Thanks for the information!!!  I had a pretty good response after 5 FOLFOX and 3 Avastin treatments, and as noted, slightly more improvement after 7 more tx of FOLFOX + Avastin.  Hoping that FOLFIRI + Avastin will continue to shrink my tumors.  I have pretty widely spread mets, but most tumors are small right now (less than 1 cm) except for the primary sigmoid colon tumor (~5cm x 2.6cm I believe) and one liver tumor (~5cm x 3.1cm).  I have multiple other small liver tumors (all lobes), multiple small lung tumors, multiple small peritoneal tumors, and a number of LNs that are affected.  I think the sheer number of small tumors makes me a poor candidate for surgery, as the peritoneal tumors have been described as grains of sand throughout the omentum, and the liver tumors are also spread throughout my liver.  How did you tolerate the ironotecan?  I have tolerated the FOLFOX quite well, but of course have a little worry about the new drug (irinotecan).  This flu epidemic is also making me a little worried about starting irinotecan, as one of it's main side effects is immunosuppression.  I did get my flu shot, as did all 6 of my kids and my wife, so we have that going for us.  The 4 youngest (all boys from 4-10)) are being home-schooled this year, so that might help as well. 

 

Tedd   

Irinotecan for me has been pretty easy.  Just keep immodium handy (i like the pill form). You're right to worry about flus and infections.  One has to stay away from people who had RECENT flu shots as well during Irinotecan.  I think my paperwork said between day 8 and 12, is when you are at your least ability to resist bugs, so be even more careful during that time period.

Winter Marie

Chelsea71 said:

Hi Tedd
I admire your
Hi Tedd

I admire your attitude. Stay strong and keep fighting. Please let us know how you're doing.

Chelsea

Milk thistle is good. I like Tumeric and my ONC told me to continue it.   I just ordered some graviola juice from AMAZON.  IVE READ GOOD THINGS AND IT'S NATURAL.   

Keep on pressing!