Would appreciate your input

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rogina2336
rogina2336 Member Posts: 188
edited September 2011 in Colorectal Cancer #1
When my husband started this journey in Nov. 2010 his CEA level was at 1145, then in March after 8 treatments of 5fu, Oxaliplatin it went down to 465 then in April it was down to 211, they dropped the oxy after his 10th treatment and since then he had been feeling really good. In June he started having issues with his platelets went 6 weeks without a treatment. Then 3 weeks ago even though his platelets were at 89 he had a treatment and since he had been having issues they allowed him to start having treatments every 3 weeks instead of 2 weeks (46 hr. pump) Now on Fri. his platelets were back up to 96 he still feels good, but he has lost 2 pounds in 3 weeks and his CEA is back up to 504. I know the CEA is a good indicator for some and not for others and even though it has always been high I feel that there has to be some activity going on since the CEA's have doubled in 4 months. He will have a CT scan on the 23rd of this month and that will tell the story of what is going on. My question to all of you is that since he is stage 4 and is not a candidate for surgery yet what other types of treatments have you been on other than the 5fu and what were the side effects?? Did they help without too many side effects?? The oncologist said that he is on mop up chemo right now and gave the quality vs. quantity speech, but also told us there were many other combinations of chemo to try. Thanks for any input you can provide this caregiver is very scared right now. Hopes, Good Health and prayers to you all. Kim

Comments

  • John23
    John23 CSN Member Posts: 2,121 Member
    #2
    Kim -

    The only input I would give at this time, is to tell you that you
    should get another opinion from a different Colorectal Surgeon
    and another opinion from a different Oncologist.

    Both "new" physicians should not be of the same group or
    organization as the ones you presently have. If you have to
    travel to a different area to locate the "new" physicians, do so.

    I would seek advice from a Colorectal Surgeon first, and
    the oncologist last. The "new" colorectal surgeon can often
    offer a suggestion regarding who he feels is a good oncologist.

    Surgeons are generally more objective regarding cancer
    treatment, and usually prefer surgery rather than chemical
    treatments (duh?). No, they are -not- leaning into their own
    profession and suggesting surgery arbitrarily, they really are
    more objective regarding the treatment of cancer than the
    average oncologist!

    Get other opinions before you travel too far down the road
    you've been told to go. You owe it to yourself and your
    spouse, to tap all resources.

    Good luck, and best of health!

    John
  • rogina2336
    rogina2336 Member Posts: 188
    #3
    John23 said:

    Kim -

    The only input I would give at this time, is to tell you that you
    should get another opinion from a different Colorectal Surgeon
    and another opinion from a different Oncologist.

    Both "new" physicians should not be of the same group or
    organization as the ones you presently have. If you have to
    travel to a different area to locate the "new" physicians, do so.

    I would seek advice from a Colorectal Surgeon first, and
    the oncologist last. The "new" colorectal surgeon can often
    offer a suggestion regarding who he feels is a good oncologist.

    Surgeons are generally more objective regarding cancer
    treatment, and usually prefer surgery rather than chemical
    treatments (duh?). No, they are -not- leaning into their own
    profession and suggesting surgery arbitrarily, they really are
    more objective regarding the treatment of cancer than the
    average oncologist!

    Get other opinions before you travel too far down the road
    you've been told to go. You owe it to yourself and your
    spouse, to tap all resources.

    Good luck, and best of health!

    John

    Thanks John I will look into
    Thanks John I will look into a surgeons point of view.
  • pepebcn
    pepebcn CSN Member Posts: 6,331 Member
    #4
    rogina2336 said:

    Thanks John I will look into
    Thanks John I will look into a surgeons point of view.

    Hi Kim , certainly there are other combos of chemo but Folfiri
    would be the most popular after oxy.normally they use it together with avastin. This are the two most popular combos but other are also available, but for any other beside these two he must be tested for KRAS mutation on his genes to see if he is candidate to any other chemo! .Hope I explained correctly and you can understand it in my Spanglish, hahaha!
    Take care my friend.
  • keystone
    keystone Member Posts: 134 Member
    #5
    John23 said:

    Kim -

    The only input I would give at this time, is to tell you that you
    should get another opinion from a different Colorectal Surgeon
    and another opinion from a different Oncologist.

    Both "new" physicians should not be of the same group or
    organization as the ones you presently have. If you have to
    travel to a different area to locate the "new" physicians, do so.

    I would seek advice from a Colorectal Surgeon first, and
    the oncologist last. The "new" colorectal surgeon can often
    offer a suggestion regarding who he feels is a good oncologist.

    Surgeons are generally more objective regarding cancer
    treatment, and usually prefer surgery rather than chemical
    treatments (duh?). No, they are -not- leaning into their own
    profession and suggesting surgery arbitrarily, they really are
    more objective regarding the treatment of cancer than the
    average oncologist!

    Get other opinions before you travel too far down the road
    you've been told to go. You owe it to yourself and your
    spouse, to tap all resources.

    Good luck, and best of health!

    John

    Great Advise!!!!

    Great Advise!!!!
  • rogina2336
    rogina2336 Member Posts: 188
    #6
    Thanks Pepe He is currently
    Thanks Pepe He is currently on 5fu and avastin and I will find out about the KRAS mutation. Thanks again. Hopes and Prayers Kim
  • PhillieG
    PhillieG CSN Member Posts: 4,866 Member
    #7
    Hi Kim
    I too was going to suggest Avastin. It did a great job with shrinking the tumors I had in my liver. Currently I'm on Erbitux and doing well with that for lung tumors.
    That's all I've got other than a possible second opinion.
    -phil

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