Running out of options?

lv2scrap
lv2scrap Member Posts: 44
edited March 2014 in Colorectal Cancer #1
My dad is stage iv since 12/05. He has been on folfox 4 + Avastin he had to stop because of neuropathy. It was working very well. Went to Xeloda & Avastin and 4 months CEA began climbing. Nov. 06 Folfuri (Vectibix) it was working but had to stop because the rash was so bad. April 07 Erbitux/Camptosar failed. Now we are back on Folfox and it worked after 2 cycles now his CEA is going back up. Doctor says he will be given 2 more rounds and if the CEA goes up they will do a CAT scan to see if there is progression. He also said we are running out of options that we have already recycled the chemo and that I should prepare myself. I just can't accept that. How could the Folfox work the first time and not now and how can we be out of options. Does anyone have any help or advice for us?

Comments

  • houseofclay
    houseofclay Member Posts: 63
    #2
    I am sorry to hear about your dad. To answer the question abou the FOLFOX working in the past but not now, unfortunately, this is the mystery of fighting colorectal cancer. Sometimes things that worked in the past are no longer effective. That being said, the opposite can be true as well. Things that did not work previously might work now. Where is the metastatic disease? Sometimes, depending on the metastatic disease, it is better to focus on a specific organ, the liver for example.

    A second opinion at a comprehensive cancer center can also be helpful. Your dad is fortunate to have such a great caregiver and advocate. Please free to email me off list at aclay@ccalliance.org if I can be of any help. Andrea
  • dash4
    dash4 Member Posts: 303 Member
    #3
    If rash was the only reason his one chemo was stopped--maybe my husband's experience could help. He started erbitux in 11/05 and has the worst reaction with his rash--high fever and the rash looked too horrible everywhere to even describe. His head bled when he laid down and was so painful. Anyhow, after many many trys-his rash is controlled and he is still on weekly erbitux - almost 2 years now. He takes soriatane and keflex for his rash. (John was diagnosed Stage IV - 10/04), I will gladly share any info with you. Good luck to you and your dad.
    Dash
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #4
    hi scrap,

    When you "run out of options" in Western Medicine there is always Eastern Medicine and complementary medicine.

    There are many options available to you there if your father is willing to work hard and go against the western medicine tide. There are a few of us on here who have and have lived to tell.

    I am a six year Stage 3 survivor who only did alternatives after my surgery. There is A LOT your father can do to improve his chances but you won't hear about them from his oncologist.

    Good luck!

    peace, emily the juice chick
  • lv2scrap
    lv2scrap Member Posts: 44
    #5
    houseofclay said:

    I am sorry to hear about your dad. To answer the question abou the FOLFOX working in the past but not now, unfortunately, this is the mystery of fighting colorectal cancer. Sometimes things that worked in the past are no longer effective. That being said, the opposite can be true as well. Things that did not work previously might work now. Where is the metastatic disease? Sometimes, depending on the metastatic disease, it is better to focus on a specific organ, the liver for example.

    A second opinion at a comprehensive cancer center can also be helpful. Your dad is fortunate to have such a great caregiver and advocate. Please free to email me off list at aclay@ccalliance.org if I can be of any help. Andrea

    He has it in his lung and bones because of that they can't focus on a particular spot. I am going to try and get a second opinion through the insurance. You said you could email me a list? I would appreciate it. Thank you.I will send you an email. How do you know all this info?
    ~lv2scrap
  • lv2scrap
    lv2scrap Member Posts: 44
    #6
    dash4 said:

    If rash was the only reason his one chemo was stopped--maybe my husband's experience could help. He started erbitux in 11/05 and has the worst reaction with his rash--high fever and the rash looked too horrible everywhere to even describe. His head bled when he laid down and was so painful. Anyhow, after many many trys-his rash is controlled and he is still on weekly erbitux - almost 2 years now. He takes soriatane and keflex for his rash. (John was diagnosed Stage IV - 10/04), I will gladly share any info with you. Good luck to you and your dad.
    Dash

    Thank you for sharing the info. It helped.
    ~lv2scrap
  • lv2scrap
    lv2scrap Member Posts: 44
    #7
    2bhealed said:

    hi scrap,

    When you "run out of options" in Western Medicine there is always Eastern Medicine and complementary medicine.

    There are many options available to you there if your father is willing to work hard and go against the western medicine tide. There are a few of us on here who have and have lived to tell.

    I am a six year Stage 3 survivor who only did alternatives after my surgery. There is A LOT your father can do to improve his chances but you won't hear about them from his oncologist.

    Good luck!

    peace, emily the juice chick

    Where do I begin?
    ~lv2scrap
  • houseofclay
    houseofclay Member Posts: 63
    #8
    To answer a couple of your questions, I am the Information Specialist for the Colon Cancer Alliance. I do not check my CSN mail often, so email at aclay@ccalliance.org. I agree with the other reply that encourages another go round of Erbitux or Vectibix and wanted to ask if the Folfuri and Vectibix were given at the same time. There are some things that can be done to help with the rash and some doctors still think the rash indicates that Erbitux and Vectibix are working. If there are only a couple of spots in his lungs, you might find a doctor willing to perform a wedge resection or RFA but multiple spots in the lungs makes that harder. The spinal mets, again, depending on number and location, can be treated with radiation. The biggest challenge you and your father are facing is finding a doctor who will be aggressive with mets in two places. Doctors who take an old school approach, so to speak, are going to look at this situation and not be terribly aggressive in treating your father. A doctor involved with clinical trials and/or specializing in colorectal cancer might be more willing to try various treatments. A second opinion is critical in your situation.

    Andrea
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #9
    lv2scrap said:

    Where do I begin?
    ~lv2scrap

    hi scrap,

    email me privately on here and I will send you some info. I'm at work and will check in later....

    I have a book list and ideas to get your father started.

    But first start looking for a Naturopathic doctor who specializes in cancer nutrition and a Traditional Chinese MEdicine practitioner who is knowlegeable in cancer healing too.

    More later....

    peace, emily the juice chick (you could start there--with juicing! :-) )

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