fanny pack kind of weekend and questions about tumor markers

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NEDbound
NEDbound Member Posts: 54
in Colorectal Cancer #1

Hello all!  Chemo treatment #4 now.  So when I recover from this one, I'm 1/3 of the way done.  Yay!

I am having more side effects from oxaliplatin as I go.  More numbness, tingling, hand and eye cramps, cold intolerance.  Nothing horrible, but hoping not to have to stop or reduce dose....we shall see.

Went to MDACC for an appointment with Integrative Medicine.  I have been taking lots of supplements - mostly from the life extensions website recommendations.  The doc there told me to stop everything. He said we don't know if it reduces the effectiveness of the chemo.  I am so torn.  I want to take everything/anything that will help.

Also, question about tumor markers.  My CEA was less than 1 at surgery, so not a marker for me.  I have no marker.  I have tried twice to get circulating tumor cell testing to try to use that has a marker to follow instead.  The results of my testing said that there is something in my blood that causes ferro fluid aggregation, basically making the test impossible to do.  Anyone know details of CTC testing? I have been online and am unable to find a list of things that might cause this issue.  Again, I'm taking lots of supplements so maybe it's one  of those.  I would really love to have a marker other than imaging.

Thanks!

Summer

Comments

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    #2
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    It happens fast, don't it? I

    It happens fast, don't it? I don't have answers to your specific questions, but I wanted to offer support. Oxaliplatin gave me neuropathy for a little over a year, but it went away. After two liver resections they don't want toi give it to me again, because their afraid the side effects would be permenant. Personally, I'm more worried about another met showing up, but theyre the doctors.

  • NEDbound
    NEDbound Member Posts: 54
    #3
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    beaumontdave said:

    It happens fast, don't it? I

    It happens fast, don't it? I don't have answers to your specific questions, but I wanted to offer support. Oxaliplatin gave me neuropathy for a little over a year, but it went away. After two liver resections they don't want toi give it to me again, because their afraid the side effects would be permenant. Personally, I'm more worried about another met showing up, but theyre the doctors.

    exactly

    I guess I don't know what living with chronic pain feels like.  But LIVING with chronic pain sounds better than the alternative.

  • abrub
    abrub Member Posts: 2,174 Member
    #4
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    The MDs at Memorial Sloan Kettering explained to me why to avoid many supplements and anti-oxidants during chemo/rads:  chemo and radiation work in part by oxidizing the cancer cells.  If you are taking antioxidants, you are counteracting the benefits of the treatments.  Similarly, other supplements might be strengthening your cancer cells, making them harder to kill (while strengthening your good cells.)  Thus it is best to avoid supplements/anti-oxidants during treatment.  When you are not in treatment, it's another story.  It's important to use Integrative Medicine doctors who know cancer well.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #5
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    other experience

    I would consult with those CAM drs and oncological naturopaths that have a strong interest in human biochemistry.   Some supplements work better with certain biomarkers.  Conventional doctors at this current point in time have repeatedly demonstrated their lack of background and skill with non-CEA biomarkers and supplements, if they don't have a very special interest in them. 

    The old saws about the conflicts between chemo and "antioxidant" supplements are based on simplistic chemistry assumptions that are often not correct, treatment wise. At least in many cases there are combinations of chemo and alternatives and supplements that do work together.   My wife has had several personal examples.  She simply could not exist in the conventional world (attested by many doctors now - can you imagine 5.7 straight years of Folfiri, Folfox and Avastin for 140-150 cycles of chemo, IF they worked that long term, which nobody expects with her met sites). 

    The person here who survived probably the most Xel-/Folfiri, got 3 extra yrs of Xel-/Folfiri tx with IV vitamin C and vitamin K3, for Reactive Oxide Species, to help "C it through" with Folfiri.

    Markers and panels that have been useful for us, using milder metronomic immunochemo, include CA19-9, AFP, LDH, GGT, MCV (from CBC), hsCRP, ESR, quantitative D-dimer, ceruloplasmin and 25 hydroxyvitamin D.  Some even on a one time basis are helpful, several others might be useful for before and after heavy chemo, which disrupts a lot of readings.  

    Again, the tx and monitoring vary with the individual and their biomarkers.   It is true that there are many unknowns at this point, along with many claims of authoritativeness or expertise.         

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