Cea rising

jen2012
jen2012 Member Posts: 1,607 Member
in Colorectal Cancer #1

Damn.

its not a surprise, but isn't it funny how we trick our minds to think, hey maybe everything will be okay.  Two days after getting the good news of a clean pet scan earlier this month, we find out cea went up to 2.5.  but he had a stomach bug so hey maybe it's just that.  Three weeks later it's 8.  It appears to be an incredibly sensitive marker for him, trending up months before scans show anything.  

he had been doing daily xeloda plus avastin every three weeks.  The beginning of January when we got the clean scan reports she stopped the xeloda and said he would continue with the avastin.  Today was avastin day and the aprn gave us the news about the cea.  Which they would not have checked if I didn't remind them that she promised to check every three weeks to keep a close eye on things.  

So onc says she doesn't want to change any thing since he's feeling okay and scan looked good.  aprn understood our anxiety and worry and texted onc about starting low dose xeloda again.  She said no.  She is quick to continuously remind us that he is stage 4 and this will continue To happen.  Yeah we get it, we are living it and don't need your reminders.  My husband thinks I'm taking thinks out on her that she has no control over.  Maybe that's true in some ways, but she screwed up big last year sitting around waiting for something to show up, when he couldn't even walk.  The memories of my kids hearing their father scream out in pain when the paramedic break his leg is something I do and will hold against her.  

Her feeling is his platelets are still low (79) and we need to hold off on chemo until she sees something on a scan.  I guess I just don't trust her judgment. still trying to get him to go elsewhere.  

I know his cea is still low compared to many others in the fight, but the anxiety is getting me tonight.

Comments

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #2

    having spleen removed will raise platelet count if it comes to that.

    as close to a guarantee as you can get:)

    craig in in hospital hell 

  • Dyanclark
    Dyanclark Member Posts: 296
    #3
    Xeloda

    My husband George had same experience.  He has been on same chemo for 2 years, Avastin, Xeloda, & Irinotecan every 3 weeks.  With CEA @1.5 he tried to stop Xeloda immediately CEA went to almost 3.  He went right back on Xeloda & CEA went down now at 2.5.  He has very tiny spots on lungs, with no growth for now.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #4
    at the crossroads, sooner is better...

    ...we need to hold off on chemo until she sees something on a scan.    Not at our house.  The met(s) might not be imageable or a large portion only poorly so, belatedly.  That is incredibly risky in the face of a known stage IV with prior CEA history, and is only justified by the excess toxicity of her treatment plans (because she doesn't know anything better).  Now is the time to fight aspiring mets, and work on those platelets.  We stockpile our oral chemo independent of any particular dr consultations.     

    In our early efforts to preserve my wife's  CBC and platelets while on chemo, we ruthlessly removed folic acid foods (vitamins with folic acid, enriched bread, flour products, etc), added 1-2 tablespoons of liver or liver products per day, foliage veggies, added PSK/Coriolus extract, and made bone marrow soup to help CBC results.  Some use papaya leaves and fish liver oil caps, too.  Her platelets have been stable enough, 150~200, on daily chemo for over 4 years now.

    We used cimetidine early on to prevent metastasis (CA19-9?) and now have used 300-400 mg celecoxib with the oral chemo to beat the CEA back down in this type of potential runaway situation, along with a lot of Life Extension Foundation's supplement recommendations, and IV vitamin C.   

    You should get second opinions, perhaps an oncological naturopath too, and perhaps find an independent scrip provider on the chemo.  I wouldn't let anyone balk me - best to end run many problems, but no holds barred either.  

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #5
    Xeloda is not supposed to

    Xeloda is not supposed to effect platelets much. My onc would let my platelets drop as low as 70 when I was still taking Irinotecan and Xeloda.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #6
    Sundanceh said:

    having spleen removed will raise platelet count if it comes to that.

    as close to a guarantee as you can get:)

    craig in in hospital hell 

    Thanks for calming me when

    Thanks for calming me when you ar feeling so crappy yourself.  Hang in there!

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #7
    Dyanclark said:

    Xeloda

    My husband George had same experience.  He has been on same chemo for 2 years, Avastin, Xeloda, & Irinotecan every 3 weeks.  With CEA @1.5 he tried to stop Xeloda immediately CEA went to almost 3.  He went right back on Xeloda & CEA went down now at 2.5.  He has very tiny spots on lungs, with no growth for now.

    Has he had any significant

    Has he had any significant breaks from treatment?  His platelets been ok?

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #8
    tanstaafl said:

    at the crossroads, sooner is better...

    ...we need to hold off on chemo until she sees something on a scan.    Not at our house.  The met(s) might not be imageable or a large portion only poorly so, belatedly.  That is incredibly risky in the face of a known stage IV with prior CEA history, and is only justified by the excess toxicity of her treatment plans (because she doesn't know anything better).  Now is the time to fight aspiring mets, and work on those platelets.  We stockpile our oral chemo independent of any particular dr consultations.     

    In our early efforts to preserve my wife's  CBC and platelets while on chemo, we ruthlessly removed folic acid foods (vitamins with folic acid, enriched bread, flour products, etc), added 1-2 tablespoons of liver or liver products per day, foliage veggies, added PSK/Coriolus extract, and made bone marrow soup to help CBC results.  Some use papaya leaves and fish liver oil caps, too.  Her platelets have been stable enough, 150~200, on daily chemo for over 4 years now.

    We used cimetidine early on to prevent metastasis (CA19-9?) and now have used 300-400 mg celecoxib with the oral chemo to beat the CEA back down in this type of potential runaway situation, along with a lot of Life Extension Foundation's supplement recommendations, and IV vitamin C.   

    You should get second opinions, perhaps an oncological naturopath too, and perhaps find an independent scrip provider on the chemo.  I wouldn't let anyone balk me - best to end run many problems, but no holds barred either.  

    Thanks for the ideas about

    Thanks for the ideas about platelets tans.  I also heard ginger can raise them?

    he just stopped the Celebrex last night since he's not taking xeloda.  I think I convinced him to see a doc at a local hospital that is a Sloan affiliate.  he does have a bunch of xeloda here but hesitates to take it without a doctors okay.  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #9
    janderson1964 said:

    Xeloda is not supposed to

    Xeloda is not supposed to effect platelets much. My onc would let my platelets drop as low as 70 when I was still taking Irinotecan and Xeloda.

    His did drop below 70, don't

    His did drop below 70, don't remember how low, but they were 69 after a Christmas break ....week off of xeloda.  I'm wondering if bone mets may be affecting platelets more than the chemo.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #10
    jen2012 said:

    Thanks for the ideas about

    Thanks for the ideas about platelets tans.  I also heard ginger can raise them?

    he just stopped the Celebrex last night since he's not taking xeloda.  I think I convinced him to see a doc at a local hospital that is a Sloan affiliate.  he does have a bunch of xeloda here but hesitates to take it without a doctors okay.  

    cocktails

    Not sure about platelets and ginger, she uses ginger ad lib anyway.    I am wondering if the Avastin is part of the platelet problems, even though it is uncommon.  Also Xeloda might be more than expected if your husband is a little DPD inhibited.   Perhaps someone can go over diet and pills with a fine tooth comb for bone marrow / platelet toxic items beyond folic acid (with chemo).   We sub in IV vitamin C and targeted cimetdine for VEGF control and would only use Avastin at fractional doses if it became necessary (not yet in 4.8 yrs).     Hope you can get a low enough toxicity cocktail in there soonest.     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #11
    tanstaafl said:

    cocktails

    Not sure about platelets and ginger, she uses ginger ad lib anyway.    I am wondering if the Avastin is part of the platelet problems, even though it is uncommon.  Also Xeloda might be more than expected if your husband is a little DPD inhibited.   Perhaps someone can go over diet and pills with a fine tooth comb for bone marrow / platelet toxic items beyond folic acid (with chemo).   We sub in IV vitamin C and targeted cimetdine for VEGF control and would only use Avastin at fractional doses if it became necessary (not yet in 4.8 yrs).     Hope you can get a low enough toxicity cocktail in there soonest.     

    I'm not sure what you mean by

    I'm not sure what you mean by dpd inhibited?  I tried googling, but I couldn't understand that either.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #12
    jen2012 said:

    I'm not sure what you mean by

    I'm not sure what you mean by dpd inhibited?  I tried googling, but I couldn't understand that either.

    DPD inhibition

    A fraction of the population degrades and excretes 5FU compounds much slower than average; chemo behaves more like a higher dose in most people. 

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #13
    tanstaafl said:

    DPD inhibition

    A fraction of the population degrades and excretes 5FU compounds much slower than average; chemo behaves more like a higher dose in most people. 

    Ok thanks ..worth asking

    Ok thanks ..worth asking about.   we are in the process of setting up appt with new doc.   

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #14
    Dear Jen

    I know the CEA rising is scary (mines been going up and down last three months last weeks was 168 and three weeks before that it was 30, scary) which makes me very happy he is seeing another doctor.  My onc yold me that Avastin by itself is really not show. To help unless combined with a chemo such as Xeloda, he did let me just try the Avastin once after a surgery that took all my mets at the time, but it did t help and I grew more tumors.

    I'm just so happy he is willing to try another onc, I wasn't liking his present one from all you told us. And you should be proud for sticking up for husband's cancer facts rather then let her roll over you, I don't think you're taking things out on her due to frustration, but due to her attitude, if at all.

    I hope you have an appt. soon.

    hugs,

    Winter Marie

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #15
    herdizziness said:

    Dear Jen

    I know the CEA rising is scary (mines been going up and down last three months last weeks was 168 and three weeks before that it was 30, scary) which makes me very happy he is seeing another doctor.  My onc yold me that Avastin by itself is really not show. To help unless combined with a chemo such as Xeloda, he did let me just try the Avastin once after a surgery that took all my mets at the time, but it did t help and I grew more tumors.

    I'm just so happy he is willing to try another onc, I wasn't liking his present one from all you told us. And you should be proud for sticking up for husband's cancer facts rather then let her roll over you, I don't think you're taking things out on her due to frustration, but due to her attitude, if at all.

    I hope you have an appt. soon.

    hugs,

    Winter Marie

    Thanks Winter.  It's a little

    Thanks Winter.  It's a little scary going for another opinion...what if this one makes things sound more bleak?  Well today is his birthday so  no  cancer talk or decisions.  Next year is the big one...50 and also our 25th anniversary.   

    hope you are hanging in there.  I can't believe how much you have been through.  

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #16
    jen2012 said:

    Thanks Winter.  It's a little

    Thanks Winter.  It's a little scary going for another opinion...what if this one makes things sound more bleak?  Well today is his birthday so  no  cancer talk or decisions.  Next year is the big one...50 and also our 25th anniversary.   

    hope you are hanging in there.  I can't believe how much you have been through.  

    Jen

    I'm sure you made sure that he has a good Birthday, I send my best wishes and look forward to his 50th, 50 just felt good when I hit it.  But then the AARP started sending me stuff to join, and I'm like not that old yet people.

    Fingers crossed on new onc visit :)

    Winter Marie

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