Stage llb diagnosis - Not sure about Xaloda

I was diagnosed with llb T3N0M0 colon cancer and still on the fence about taking Xaloda. I am 50 and in great mental and physical health.  I have until the end of next week to let my Oncologist know what my decision is. I welcome any advice I can get. 

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Comments

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Welcome to the forum

    I am so happy to see you post; and please know that apologies were not expected. I would say that 80% of us started our fourm days posting on someone elses thread, me included. 

    And wow, you do have a big decisoin to make.  As you have seen from the other post, you are not alone in making this big decision and at the end of the day, it will be yours alone to make. 

    Well, I say that, but hopefully you have some loved ones who are there to support. 

    I started this journey at a different place than you did, with the decisoin basically taken out of my hands. The tumour was big and had to be removed, and lymph nodes were active and did end up spreading, though not discovered until after treatment. 

    I will say that your present physical health has nothing to do with the Cancer.  When I was diagnosed, and especially with my recurrance in the liver, I was as fit as a fiddle. I remember looking at myself in the mirror when I found out my CEA had jumped and jumped again, thinking 'I look so good' and I did, yet that damn Cancer was happily growing away insdie of me. The 'silent killer' is what they call it. So, general health and wellbeing is not a factor I would take into consideration - but remember, that is just MY opinion. 

    Have you had surgery?  If so, were any lymph nodes affected? 

    I am personally thinking - if it were me - I would go ahead and have treatment. If you haven't had surgery, then you don't really knwo what is going on inside. For me better safe than sorry would be the route I would take. 

    There are other things to consider, but I will let those with more knowledge help you out there. 

    I wish you all of the best, and hope that our friends here on the forum can help you make this very hard decision. 

    Blessings!

    Tru

     

  • Mikenh
    Mikenh Member Posts: 777
    edited December 2017 #3
    Stage II is the debated area

    Stage II is the debated area for Ajuvant chemo. At stage III, there is no debate. I was T3 with three suspicious regional lymph nodes but pathology indicated no cancer after surgery. The problem is that the cancer could have been destroyed by Neo-Adjuvant Chemo and Radiation. If those lymph nodes weren't suspicious, then I'd be in the same place as you are. But the oncologist can't make the assumption that those lymph nodes were cancerous. So I'm going through Adjuvant Chemo.

    Chemo affects everyone differently but I had few side-effects from Xeloda. It dropped my red and white blood cell counts and I tired out more easily but I was still functional and could work full-time. It might have a minimal effect on you or it might have more difficult side-effects. I think that your physical health may make it easier to do the Xeloda as that seems to be the general trend. You lose a good amount of stamina but you may still be functional if you have far more than the average person.

  • darcher
    darcher Member Posts: 304 Member
    I went from 3 to 2, maybe.

     I started out being told it was 3.  After surgery it was downgraded to 2 and was told it was probably the pre-surgery chemo/radiation that killed it off in the lymph nodes. I'm stilll getting the follow up chemo per their recommendation. I took and will be taking again the same stuff, Xeloda.  It's not fun but it sure as heck beats being dead.

    I'll be blunt. Unless you have MD next to your name you're playing with a grenade that just had the pin pulled.  How you feel now is no indicator of where you'll be in six months. Cancer didn't get it's nick name of being the silent killer by playing nice.  You've got to slam this now while you're still on top. Do what the doctor recommends.  

  • Tunadog
    Tunadog Member Posts: 235
    edited December 2017 #5
    I'm with Darcher

    My cancer was difficult to stage. I was told "in situ", 4..3..2... couldn't tell until after the surgery.

    My doctor sent to a Gastro doc h took a look pressed on it and said "in situ" there's blood and we scheduled a Colonoscopy to take a biopsy. It came back negative. I had another doctor a surgeon take a large sample to biopsy and he took out about half my tumor and it came back negative. I then found the best Colorectal Surgeon in the area, he had an Anal Ultrasound which showed the 5 layers of my rectum. He point out breaks in the layers and indicated that they may be where they took the biopsy or Cancer. He had a special tool to take a snip to biopsy. It came out positive. I had Radiation and Chemotherapy and then surgery. I went in for a routine LAP three hour surgery, it lasted six hours with no,transfusion. They got most of it but had scattered within my abdominal wall, no lymph node involvement. Then six months of Oxi and Xeloda and scanned clean, although there was undetermined lighting near my sacral on the PT scan. I was off the Chemotherapy.

    I had a recurrence and I'm responding excellently to Xeloda and Avastin,  my CEA is at 3.2 and going lower.

    I'm a IIb. I'll be on Xeloda until I'm dead or NED. 

    Trust your doctors, best of luck on your decision. 

    Life is a journey...

  • Mickeyclaude
    Mickeyclaude Member Posts: 21
    Xaloda

    i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

     

  • Tunadog
    Tunadog Member Posts: 235

    Xaloda

    i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

     

    Yes - I had the genetic testing.

    My Oncologist had them take a sample during surgery. He has informed me about everything.

    It did not change my treatment.

  • Mikenh
    Mikenh Member Posts: 777

    Xaloda

    i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

     

    There is a genetic condition

    There is a genetic condition where Xeloda/5FU is toxic as the body can metabolize it to get rid of it. I think that any oncologist going with 5FU or Xeloda has to order this test. I'm not sure that that's the same testing that you're talking about though.

     

  • Tunadog
    Tunadog Member Posts: 235
    I'm not sure either

    I have been completly tested. Only had to yell at the insurance company once, for a test on the operating table.

    The test for Xeloda toxicity would have been before Radiation and Chemotherapy, I.e. Before surgery.

  • Mikenh
    Mikenh Member Posts: 777
    Tunadog said:

    Yes - I had the genetic testing.

    My Oncologist had them take a sample during surgery. He has informed me about everything.

    It did not change my treatment.

    That sounds like Genomic

    That sounds like Genomic Tumor Testing - usually to determine your gene mutations(s). Good thing to know though usually not covered by insurance.

  • abita
    abita Member Posts: 1,114 Member
    edited December 2017 #11
    Trubrit said:

    Welcome to the forum

    I am so happy to see you post; and please know that apologies were not expected. I would say that 80% of us started our fourm days posting on someone elses thread, me included. 

    And wow, you do have a big decisoin to make.  As you have seen from the other post, you are not alone in making this big decision and at the end of the day, it will be yours alone to make. 

    Well, I say that, but hopefully you have some loved ones who are there to support. 

    I started this journey at a different place than you did, with the decisoin basically taken out of my hands. The tumour was big and had to be removed, and lymph nodes were active and did end up spreading, though not discovered until after treatment. 

    I will say that your present physical health has nothing to do with the Cancer.  When I was diagnosed, and especially with my recurrance in the liver, I was as fit as a fiddle. I remember looking at myself in the mirror when I found out my CEA had jumped and jumped again, thinking 'I look so good' and I did, yet that damn Cancer was happily growing away insdie of me. The 'silent killer' is what they call it. So, general health and wellbeing is not a factor I would take into consideration - but remember, that is just MY opinion. 

    Have you had surgery?  If so, were any lymph nodes affected? 

    I am personally thinking - if it were me - I would go ahead and have treatment. If you haven't had surgery, then you don't really knwo what is going on inside. For me better safe than sorry would be the route I would take. 

    There are other things to consider, but I will let those with more knowledge help you out there. 

    I wish you all of the best, and hope that our friends here on the forum can help you make this very hard decision. 

    Blessings!

    Tru

     

    Why didn't they see the

    Why didn't they see the spreading on the Pet Ct scan they do to evaluate before starting chemo? Nervous just because mine didn't show spreading. Mine was on the liver, but I knew that from the regular CT.

    Mine on livver did grow while I waited to recover enough to start surgery. But like you, my tumor removal from bowe was an emergency to get out as it was large and had perforated my bowel. 

  • kmcgowan
    kmcgowan Member Posts: 7
    Trubrit said:

    Welcome to the forum

    I am so happy to see you post; and please know that apologies were not expected. I would say that 80% of us started our fourm days posting on someone elses thread, me included. 

    And wow, you do have a big decisoin to make.  As you have seen from the other post, you are not alone in making this big decision and at the end of the day, it will be yours alone to make. 

    Well, I say that, but hopefully you have some loved ones who are there to support. 

    I started this journey at a different place than you did, with the decisoin basically taken out of my hands. The tumour was big and had to be removed, and lymph nodes were active and did end up spreading, though not discovered until after treatment. 

    I will say that your present physical health has nothing to do with the Cancer.  When I was diagnosed, and especially with my recurrance in the liver, I was as fit as a fiddle. I remember looking at myself in the mirror when I found out my CEA had jumped and jumped again, thinking 'I look so good' and I did, yet that damn Cancer was happily growing away insdie of me. The 'silent killer' is what they call it. So, general health and wellbeing is not a factor I would take into consideration - but remember, that is just MY opinion. 

    Have you had surgery?  If so, were any lymph nodes affected? 

    I am personally thinking - if it were me - I would go ahead and have treatment. If you haven't had surgery, then you don't really knwo what is going on inside. For me better safe than sorry would be the route I would take. 

    There are other things to consider, but I will let those with more knowledge help you out there. 

    I wish you all of the best, and hope that our friends here on the forum can help you make this very hard decision. 

    Blessings!

    Tru

     

    Thanks Tru!!!   Yes, I did

    Thanks Tru!!!   Yes, I did have surgery and they were able to completely remove the cancer.  I had 15 lymph nodes taken and all were negative. I had a CT scan of my lower abdomen, that is when they found the tumor, but there was no evidence of it anywhere else.  Later, I had a CT scan of my upper body and it was clean. My CEA level is normal and I do not have any genetic mutations that put me at more risk of recurrence. 

    This is such a hard decision to make.  All my family and friends are supportive either way.

     

  • kmcgowan
    kmcgowan Member Posts: 7

    Xaloda

    i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

     

    Yes

    Yes, I had no genetic mutations, my CEA levels are normal, and I had an upper CT scan that came back clean.  It's a tough decision!

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    kmcgowan said:

    Thanks Tru!!!   Yes, I did

    Thanks Tru!!!   Yes, I did have surgery and they were able to completely remove the cancer.  I had 15 lymph nodes taken and all were negative. I had a CT scan of my lower abdomen, that is when they found the tumor, but there was no evidence of it anywhere else.  Later, I had a CT scan of my upper body and it was clean. My CEA level is normal and I do not have any genetic mutations that put me at more risk of recurrence. 

    This is such a hard decision to make.  All my family and friends are supportive either way.

     

    Good luck!

    There are members on the fourm who have, at your stage, chosen not to go ahead with chemo and they don't post any more because they are living their lives happily. I also have a friend who was Stage I, Had surgery, no lymph nodes and no sign of spread, no chemo and is doing great. 

    So yes, you decison is going to be a hard one, and I wish you all the best. 

  • jodad
    jodad Member Posts: 5
    IIb or not IIb

    Not trying to nit pic but my understanding is that T3N0M0 is stage IIa.  I only mention this because it may affect the advice people give you.  My son was IIb and chemo seemed to be a no brainer because he had several other risk factors.  If you do not have any risk factors then it makes it a tougher call.  For what it is worth, my son did 6 months of FOLFOX and did not have any major issues.  He is 1.5 years from his surgery and is NED.

  • Hoot
    Hoot Member Posts: 1
    New here.  But I was

    New here.  But I was diagnosised with rectal cancer on April 4th.  Had chemo (Xeloda) and radiation first.  Had to stop Xeloda early because it was making me sick and I couldn't finish my radiation.  However I did finish and had surgery on 9/11.  Now I am going through chemo again bc 2 of my lymph nodes were affected.  One the cells were dead and the other there was a very small amount.  So he started me on xeloda and oxiplat.  Now he has taken me off the Xeloda and wants to put me on the chemo pump bc my body is not tolerating the Xeloda.  My WBC is very low.  Has anybody had the pump and how does it work and what are the side effects.  Scared!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Xeloda

    That is what my recommendation was along with radiation for rectal cancer when first diagnosed.  Never had any problem with it and it didn't bother my hands or feet very much as they said to apply a lot of lotion to both.  Stage 2 can be very debatable as far as treatment because if it comes back it can come back with a vengence and then it will be a lot harder to cure once it has returned.  You do whatever you and your oncologist thinks best but make sure you do it with no regrets.  It's hard to look into the future and even harder to look back and say "if only".  Best to you.

    Kim

  • kmcgowan
    kmcgowan Member Posts: 7

    Xaloda

    i am also stage 2A. I am going to set up appt. w oncologist. I see your lymph nodes were not affected , same here...I may base my decision on the results of a genetic test I took...did you take that too?

     

    Genetic testing

    Yes, I had genetic testing and I had no mutations

  • Mickeyclaude
    Mickeyclaude Member Posts: 21
    edited December 2017 #19
    Tests

    To clarify what tuna dog responded to, I was tested for genetic mutation. i am just factoring it in to my decision ...km is probably hesitant in the same way as I am, as our stage it is more of a choice put before us than a strong recommendation...

     

  • Mickeyclaude
    Mickeyclaude Member Posts: 21
    jodad said:

    IIb or not IIb

    Not trying to nit pic but my understanding is that T3N0M0 is stage IIa.  I only mention this because it may affect the advice people give you.  My son was IIb and chemo seemed to be a no brainer because he had several other risk factors.  If you do not have any risk factors then it makes it a tougher call.  For what it is worth, my son did 6 months of FOLFOX and did not have any major issues.  He is 1.5 years from his surgery and is NED.

    Thx no dad and welcome hoot

    thankyou both for your input,  I appreciate everyone  their experience so much

     

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    Hoot said:

    New here.  But I was

    New here.  But I was diagnosised with rectal cancer on April 4th.  Had chemo (Xeloda) and radiation first.  Had to stop Xeloda early because it was making me sick and I couldn't finish my radiation.  However I did finish and had surgery on 9/11.  Now I am going through chemo again bc 2 of my lymph nodes were affected.  One the cells were dead and the other there was a very small amount.  So he started me on xeloda and oxiplat.  Now he has taken me off the Xeloda and wants to put me on the chemo pump bc my body is not tolerating the Xeloda.  My WBC is very low.  Has anybody had the pump and how does it work and what are the side effects.  Scared!

    New thread

    Welcome Hoot.

    Can I suggest you start a new thread here    https://csn.cancer.org/forum/128

    That way we can all answer your question without running up the original thread.  I personally have lots to say about the pump (I always have lots to say).

    Look forward to seeingy our new thread.

    Tru