No NED for Tedd-Update below...

tachilders
tachilders Member Posts: 313
edited January 2013 in Colorectal Cancer #1

Got my CT results today after 12 tx of 5FU + Oxaliplatin and 10 tx of Avastin.  Previous CT scans were taken after 5 tx of 5FU + Oxaliplatin and 3 tx of Avastin.  Despite doing very well with the chemo (with respect to side effects), feeling very good the last few months, and hoping/praying for the best, I am not close to NED.  I have had shrinkage/improvement pretty much across the board in all mets (lung, LN, liver, peritoneum), as well as the primary colon tumor, but they are all still there.  My oncologist said it was a good result, but certainly not the result I was really hoping for. The plan is to drop the oxaliplatin and go with a maintenance regimen of 5FU (either infusion or oral Xeloda) + avastin and get re-checked by CT scan in 3 months or so.  I did look at my actual CT scans this time, and had a little more in-depth discussion about my tumors.  After today's discussion, I think I have more advanced metastasic disease than I first realized, and many small tumors that are too small to accurately characterize by CT scan (my onc described the omental tumors like grains of sand).  She also explained that the CT scanner takes 3mm width sections, so any tumors smaller than that can be missed or very hard to see.  At this point, I don't think I have much chance of achieving NED status, which is probably not great news with respect to overall prognosis.  To be honest, I am a little disappointed that I am not responding better, and a little worried that my prognosis is not as good as I had been hoping for.  Oh well, that just means I have to be more disciplined about getting some bucket list items accomplished, and sooner than later.  Hopefully, the maintenance chemo will work well for me, and I will continue to feel as good as I have so far.  I do look forward to not having the oxaliplatin side effects for a little while, but the onc did say that I could go back on it if the neuropathy gets better, since it appears to still be helping.  The other option is irinotecan if and when the maintenance chemo stops working.  In summary, despite hoping for a home run, it looks like all I got was a single today.  

Tedd 

 

Edited to add that I am starting to think more about alternative treatments, dietary changes, etc.... to see if that will help, since the chemo doesn't look like it will be enough by itself.  I know there is a lot of info out there on this, so I will have to do some research in the next few days/weeks.  I can't afford to follow in Pete's footsteps and go to Germany for treatment, but I'm thinking of things like ursolic acid, cutting out refined sugars in my diet, etc...

Comments

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Been trying to reply for a
    Been trying to reply for a while and keep losing my message and gettig kicked off the site. Sorry to hear that you didnt get that ned news but hang in there. Trying some alternatives sounds like a great idea.
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    I'm so frustrated with this
    I'm so frustrated with this website too. Seems like when I need it the most, it takes two hours to get on.

    Sorry that you didn't get the results you were hoping for. Remember, it could always be worse. I remind myself of that a lot lately.

    Today Steve and I saw his liver tumors (ct scans) for the first time. I found it very disturbing. It's one thing to hear and understand that they are there, but for some strange reason, seeing them, made it all more real.

    Chelsea
  • jen2012
    jen2012 Member Posts: 1,607 Member
    Site is better now...with

    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.

  • tommycat
    tommycat Member Posts: 790
    Well, you're still in the

    Well, you're still in the ballpark (to follow along with your analogy).

    Sounds like things MAY improve for you...you've had some progress and progresss is progress.

    Keep your chin up, okay?

    Here's to a better scan next time~

  • annalexandria
    annalexandria Member Posts: 2,571
    I know the feeling...

    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

  • thxmiker
    thxmiker Member Posts: 1,278
    The battle with cancer is on

    The battle with cancer is on many levels.  Nutrition, fitness, mental health, chemo, etc...  We have the Doctors taking charge with the chemo, but what about the rest of the battle? There are many good books available.  Nature's Cancer - Fighting Foods  was a good reference for me.  It talks about good nutrition and why certain foods help both in a clinical way and in a down to earth way.  It shows how to ease symptoms of cancer through foods.  It made sense to me.  I have read Gerson Therapy, and many others.  They have such a clinical approach and a lot of it makes no sense.  If you do not juice with a $2500 juicer the diet will not work, etc... Then the book has the dealer for said $2500 juicer.  Really?

     

    Do not go crazy on "Mango Juice to the Scalp" therapies either. They are there to take your money. If it does not make sense, there probably is not much sense there.

     

    Whom could not be more fit?  All of us could be a little more fit. Taking walks when I was on chemo helped me a lot. Soon, I was walking in the mountains for miles. Now, we live in the mountains, and we walk every day. Two evenings ago, we crossed two elk 1/2 mile from our home. 

     

    Best Always, mike

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Tedd

    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
    tachilders Member Posts: 313
    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.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    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...

    good plan...

  • janie1
    janie1 Member Posts: 753
    Sundanceh said:

    good plan...

    good plan...

    Hi Tedd,
    I recently asked my

    Hi Tedd,

    I recently asked my onc about taking Celebrex (it is a cox-2 inhibitor).  Surprisingly she was all for it, because perhaps there has been enough research on it, that it "may" help with "anti-tumor effects".  Now, this is not a light-weight drug.  Each person has to weigh the benefits.  It can have some serious (but rare) side effects.  Never hurts to get their opinions.

    Wishing you all the best.  Keep us up-dated.

     

  • k44454445
    k44454445 Member Posts: 494
    Tedd

    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

  • herdizziness
    herdizziness Member Posts: 3,624
    Your bodies response

    seems to be on the positive side there Ted, they are shrinking, that's the goal, and NED won't happen probably until after a surgery happens.

    So don't be too down, it sounds pretty good to me.

    And excercise never hurt anyone and it's supposed to help, so definitely go for that one!!!

    Winter Marie

  • vinaykumar
    vinaykumar Member Posts: 66
    please check this and the doctor...hope its useful for you

    http://www.demandcurestoday.org/colon_cancer_stem_cell_clinical_trial

  • tachilders
    tachilders Member Posts: 313
    k44454445 said:

    Tedd

    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

    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   

  • herdizziness
    herdizziness Member Posts: 3,624

    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   

    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

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900

    please check this and the doctor...hope its useful for you

    http://www.demandcurestoday.org/colon_cancer_stem_cell_clinical_trial

    tedd lets find the best way through this test

    goodluck with whatever therapy you decide, it maybe guided by your onc, other doctors. follow your gut. if you want to life to be exciting well put on a smile and type into google cancer and cure and get started. only joking, the life extension foundation has its annual sale on, its colorectal guide a good starting place.

    regardless we are alive, with it comes a few opportunities to grow into amazingly strong people. we are doing that together.

    hugs,

    pete

  • tachilders
    tachilders Member Posts: 313
    Well, the final decison was

    Well, the final decison was to continue on with just the 5FU + Avastin (maintenance chemo), but to do a CT scan in 2 months to make sure this is still working and no tumor growth.  If all looks good in 2 months, we will continue with the 5FU + Avastin, and might even switch to Xeloda instead of the infusion 5FU.  When needed, we will add in irinotecan, or possibly even go back to oxaliplatin, if the neuropathy is resolved.  Both my local oncologist and my oncologist at Northwestern were quite happy with the CT results, so maybe my expectations were too high initially.  I'll update in March after next CT scans.

    Have already started making some dietary changes, and am looking into melatonin, cimetidine, and some other things folks on here have had good luck with.  Might look into milk thistle as well. 

    Tedd

  • Chelsea71
    Chelsea71 Member Posts: 1,169

    Well, the final decison was

    Well, the final decison was to continue on with just the 5FU + Avastin (maintenance chemo), but to do a CT scan in 2 months to make sure this is still working and no tumor growth.  If all looks good in 2 months, we will continue with the 5FU + Avastin, and might even switch to Xeloda instead of the infusion 5FU.  When needed, we will add in irinotecan, or possibly even go back to oxaliplatin, if the neuropathy is resolved.  Both my local oncologist and my oncologist at Northwestern were quite happy with the CT results, so maybe my expectations were too high initially.  I'll update in March after next CT scans.

    Have already started making some dietary changes, and am looking into melatonin, cimetidine, and some other things folks on here have had good luck with.  Might look into milk thistle as well. 

    Tedd

    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
  • Nana b
    Nana b Member Posts: 3,030
    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

    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! 

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Well, the final decison was

    Well, the final decison was to continue on with just the 5FU + Avastin (maintenance chemo), but to do a CT scan in 2 months to make sure this is still working and no tumor growth.  If all looks good in 2 months, we will continue with the 5FU + Avastin, and might even switch to Xeloda instead of the infusion 5FU.  When needed, we will add in irinotecan, or possibly even go back to oxaliplatin, if the neuropathy is resolved.  Both my local oncologist and my oncologist at Northwestern were quite happy with the CT results, so maybe my expectations were too high initially.  I'll update in March after next CT scans.

    Have already started making some dietary changes, and am looking into melatonin, cimetidine, and some other things folks on here have had good luck with.  Might look into milk thistle as well. 

    Tedd

    Thats great that your docs
    Thats great that your docs are happy with results. Good luck!