Metastasis to lungs

Heidilynn79
Heidilynn79 Member Posts: 5
in Colorectal Cancer #1

Hey y’all.  I am new to this site. Here is my story... may 2017 stage 1 colorectal cancer - surgery and colorectal resection.  30 lymph nodes removed and all were negative.   Went to a follow up scan and had one lymph node outside my bLadder.  Started oxiplaten and xeloda for 8 cycles.  Did 28 cycles of radiation.   Had my 6 month scan and have 2 more nodes and 2 spots on my lung.  Cea is only 1.  I am having a biopsy on Monday and he went ahead and scheduled me for chemo May 13.  Folfiri.  they are going to do genetic testing to see if I am eligible for immunotherapY.  He is going to do a avastin as well    

anyone have this experience.  They called it a treatment fail.   what is the reasoning for the xeloda if it didn’t work the first time? I Will also ask him this question next week.  

 

Any my advice if appreciated. Thank you!

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Comments

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #2
    So sorry to hear!

    I do not know why some oncs start off with FOlfox, versus oxy/Xeloda--not sure if IV 5Fu works differently than the oral Xeloda stuff. I wish I knew more of the reasoning and protocols. Were the nodes in your lungs diagnosed by PET scan?  Praying for you and hoping the next treatment works!!

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #3
    Hello and welcome. It's

    Hello and welcome. It's interesting how different doctors use different protocals. I wonder what their decisions are based on. How long will it take to get the results ofr the immunotherapy? That's what I'm on now although I assume there's more than one. Xeloda did nothing for me.

    Jan

  • flutemon
    flutemon Member Posts: 41 Member
    #4
    Xeloda...

    Xeloda wasn't good for me.  I took it as mop-up chemo after surgery as a stage 3b.  As a polio survivor (neuro muscular involvement) we worried about what the oxi would do.  And to make the course of treatment easier since I wasn't doing oxi, I just did xeloda.  Scan after 4 months found 4 liver mets that weren't there before surgery.  SO now I've done 6 rounds of folfiri with avastin, had liver resection and sbrt, then 6 more rounds of folfox.  Scan last week showed NO EVIDENCE OF DISEASE.  Of course now I wonder if folfox at the beginning would have saved all of the treatment and worry.  Xeloda didn't seem to do much for me.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #5
    flutemon said:

    Xeloda...

    Xeloda wasn't good for me.  I took it as mop-up chemo after surgery as a stage 3b.  As a polio survivor (neuro muscular involvement) we worried about what the oxi would do.  And to make the course of treatment easier since I wasn't doing oxi, I just did xeloda.  Scan after 4 months found 4 liver mets that weren't there before surgery.  SO now I've done 6 rounds of folfiri with avastin, had liver resection and sbrt, then 6 more rounds of folfox.  Scan last week showed NO EVIDENCE OF DISEASE.  Of course now I wonder if folfox at the beginning would have saved all of the treatment and worry.  Xeloda didn't seem to do much for me.

    Don't look back, flutemon

    look forward and to continued NED.  

    There is always something to second guess, that it could drive you crazy. So onward and upward is the key.

    Congratulations on being NED. 

    Tru

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #6
    flutemon said:

    Xeloda...

    Xeloda wasn't good for me.  I took it as mop-up chemo after surgery as a stage 3b.  As a polio survivor (neuro muscular involvement) we worried about what the oxi would do.  And to make the course of treatment easier since I wasn't doing oxi, I just did xeloda.  Scan after 4 months found 4 liver mets that weren't there before surgery.  SO now I've done 6 rounds of folfiri with avastin, had liver resection and sbrt, then 6 more rounds of folfox.  Scan last week showed NO EVIDENCE OF DISEASE.  Of course now I wonder if folfox at the beginning would have saved all of the treatment and worry.  Xeloda didn't seem to do much for me.

    I took the twelve rounds of

    I took the twelve rounds of Folfox after the colon surgery, didn't stop 2 recurrences in my liver..............................................................Dave

  • flutemon
    flutemon Member Posts: 41 Member
    #7
    Trubrit said:

    Don't look back, flutemon

    look forward and to continued NED.  

    There is always something to second guess, that it could drive you crazy. So onward and upward is the key.

    Congratulations on being NED. 

    Tru

    Thanks

    Thanks for your comment.  Too much life to live for that crazy second guessing.  

  • flutemon
    flutemon Member Posts: 41 Member
    #8
    beaumontdave said:

    I took the twelve rounds of

    I took the twelve rounds of Folfox after the colon surgery, didn't stop 2 recurrences in my liver..............................................................Dave

    Thanks

    I only had 6 rounds for mop up this time.  It wasn't as bad as we thought it would be neuropathy wise, but it was getting worse.  You are amazing to have made it through 12 rounds. 

  • Butt
    Butt Member Posts: 352 Member
    #9

    Hey, Flutemon, is that pic from FL? Butt.

  • Heidilynn79
    Heidilynn79 Member Posts: 5
    #10
    myAZmountain said:

    So sorry to hear!

    I do not know why some oncs start off with FOlfox, versus oxy/Xeloda--not sure if IV 5Fu works differently than the oral Xeloda stuff. I wish I knew more of the reasoning and protocols. Were the nodes in your lungs diagnosed by PET scan?  Praying for you and hoping the next treatment works!!

    Yes they showed up in the ct

    Yes they showed up in the ct and then he ordered a pet.  They were biopsied yesterday. Still waiting results! Thank you!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited May 2019 #11
    Heidilynn79 said:

    Yes they showed up in the ct

    Yes they showed up in the ct and then he ordered a pet.  They were biopsied yesterday. Still waiting results! Thank you!

    Welcome Heidilynn79

    I hope you get good news from your biopsy.  When will you get the results? 

    Tru

  • Joan M
    Joan M Member Posts: 409 Member
    #12
    Xeloda is same as 5FU

    When I was on Xeloda with Avastin I don't think they added the Leucovorin.  Now I am on Folfiri every 3 weeks, and have to get the 5FU in bolus every week because I had problems with the 48 hour pump.   They give me Leucovorin every time I get the 5FU because my doctor says it won't work without it.  Maybe that is why the Xeloda doesnt work if we're not getting the Leucovorin with it?  Just a guess, but I am going to talk to my oncologist about it so I can try Xeloda again and not go in every week for the 5FU bolus shots.  It gets old going to the cancer center so often for infusions and also the 5FU makes me more ill than the Xeloda. I never threw up on Xeloda but now I am getting sick every time I go for infusions.  Plus you get a little more freedom when not going to doctor every week.

    Not sure if this helped you, but  you could ask your doctor more about it too.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #13
    Sorry

    Sorry you have to be here.  I'm not really able to help you with your question but my treatment was first Xeloda/radiation, then surgery, then FOLFOX with the oxy.  I'm hoping that this new treatment works for you.

    Kim

  • Heidilynn79
    Heidilynn79 Member Posts: 5
    #14
    beaumontdave said:

    I took the twelve rounds of

    I took the twelve rounds of Folfox after the colon surgery, didn't stop 2 recurrences in my liver..............................................................Dave

    What is your new treatment

    What is your new treatment plan?

  • abita
    abita Member Posts: 1,152 Member
    #15
    Heidilynn79 said:

    What is your new treatment

    What is your new treatment plan?

    I had two new spots on my

    I had two new spots on my liver after during mop chemo, so then went through folfox again. It got rid of most of the liver tumors, but 2 spots grew on lungs. I stopped folfox in march(allergies just got too bad to continue), so the two liver tumors grew back, and now there are 4 spots on lungs. Getting ready for appt at MSK to find out my treatment options and pick one. My oncologist sent me there inthe hope of finding an immunotherapy. I know this is easier on the system, but I am kind of leaning towards a chemo as I hear that has better results. I don't know, guess it matters what options I have. But all spots are less than 2 cm and I really just want them shrunk as fast as possible. 

    What treatment are you on now?

     

  • Heidilynn79
    Heidilynn79 Member Posts: 5
    edited May 2019 #16
    update

    The lymph node was positive for metastatic CRC but the spot on the lung was negative. He said they did not get enough cells....

    The cells were sent for advanced genetic testing which I am still waiting on the results.  Meanwhile I started irinotecan, avistin, and xeloda.  I will complete two cycles of this and then the CT scan will be done to see if the lymph nodes and spots respond.

     

    Thank you all.

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #17
    Lung nodules

    Having lung mets myself I am always anxous to hear about others with same--and their treatments. Did the lung nodules light up with the PET scan? I don't undertand about the "didn't get enough cells", meaning the lung biopsy?  So sorry you are having to deal with all this and praying for a good response from the next treatment!!

     

  • Heidilynn79
    Heidilynn79 Member Posts: 5
    #18
    myAZmountain said:

    Lung nodules

    Having lung mets myself I am always anxous to hear about others with same--and their treatments. Did the lung nodules light up with the PET scan? I don't undertand about the "didn't get enough cells", meaning the lung biopsy?  So sorry you are having to deal with all this and praying for a good response from the next treatment!!

     

    Yes. The lung spots lit up on

    Yes. The lung spots lit up on the pet scan and 2 lymph nodes.  he biopsied one lymph node and that was positive. The spot on my lung was negative.  But he said that he believes it is cancer because it was not there at the last scan.  

    I will have one more round of iritec avastin and xeloda before he rescans me to make sure the spots are responding.  

    What treartment are you on?

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #19
    Lung spots

    Lung spots seem so difficult to figure out IMO--I don't know if it because of differences in the distance between the "slices" of the CT scan, postioining on the table, or if you are breathing incorrectly--but I had some spots come and go --Wonder how your lung spot lit up with PET but they said was negative? Has your CEA always been normal?  In any case I did 9 rounds of the FOLFOX/Avastin from May 2018-Nov. 2018 (breaks were due to ports that developed stitch abcesses and had 3 ports) changed my diet, drank a boatload of green tea --so far nothing new has grown in lungs, and the 2 existing (biopsied) tumors have shrunk by more than half, was just scan about 2 weeks ago, CEA 1.6  I consider myself extremely blessed that nothing new or nothing grew 6 months post chem.  I had port removed and I honestly do not plan on more harsh chemo --if I have to I would consider oral 5 FU but I just do not want to put any more poison in my body. My oncologist says he thinks my immune system is fighting it . If you like to read info about alternative approaches to cancer treatment I recommend "How to starve Cancer' by Jane McLelland--just my 2 cents! Hoping you can stabilise and beat those lung spots!

     

  • abita
    abita Member Posts: 1,152 Member
    #20
    myAZmountain said:

    Lung spots

    Lung spots seem so difficult to figure out IMO--I don't know if it because of differences in the distance between the "slices" of the CT scan, postioining on the table, or if you are breathing incorrectly--but I had some spots come and go --Wonder how your lung spot lit up with PET but they said was negative? Has your CEA always been normal?  In any case I did 9 rounds of the FOLFOX/Avastin from May 2018-Nov. 2018 (breaks were due to ports that developed stitch abcesses and had 3 ports) changed my diet, drank a boatload of green tea --so far nothing new has grown in lungs, and the 2 existing (biopsied) tumors have shrunk by more than half, was just scan about 2 weeks ago, CEA 1.6  I consider myself extremely blessed that nothing new or nothing grew 6 months post chem.  I had port removed and I honestly do not plan on more harsh chemo --if I have to I would consider oral 5 FU but I just do not want to put any more poison in my body. My oncologist says he thinks my immune system is fighting it . If you like to read info about alternative approaches to cancer treatment I recommend "How to starve Cancer' by Jane McLelland--just my 2 cents! Hoping you can stabilise and beat those lung spots!

     

    Are you saying you stopped

    Are you saying you stopped chemo while still having spots on your lungs that you know are cancer?

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #21
    abita said:

    Are you saying you stopped

    Are you saying you stopped chemo while still having spots on your lungs that you know are cancer?

    Yes and No.

    Yes and No.  I stopped the FOLFOX chemo after 9 rounds because of worsening severe neuropathy in hands and fingers, mutually agreed upon by me and oncologist. I chose not to do any maintenance chemo (Avastin) after finding out studies showed it did ot significantly (or at all) extend life, and I had side effects from it.  Plan became to scan every 3 months and watch and wait, if no new mets anywhere I was considering a lobectomy--however follow up scans showed no new mets and the existing one partiially calcified and hypometabolic and less than 1cm., lung surgeon wants to wait and rescan in 3 months as disease is stable. So yes I still had known met in lung when I stopped chemo, but it was mutually agreed upon by myself and oncologist/surgeon. 

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