Something to hopefully lift all spirits.....

Buzzard
Buzzard Member Posts: 3,043 Member
edited March 2014 in Caregivers #1
John Nimmons (screen name snomminj) Posted this today for all of us in the colorectal cancer thread......It is very exciting to read...I hope you enjoy this....I hope it comes to past to help everyone...



October 30, 2009 - 12:01pm

About four months ago I had several chunks of my tumor sent off to a new lab for a detailed genetic and protein expressive oncotyping. This is new technology and the lab doing this technically isn't open yet. A buddy I went to grad school with sold them some of the diagnostic equipment they use. He got my samples and they were used to calibrate and test the equipment. This technology is not currently covered by insurance and is a pay for service lab. A complete test I'm told runs about $20,000. I got a free oncotyping out of the deal. The results came in today, my oncologist called me immediately. I have never heard any doctor so happy. Not necessarily for me but for all cancer patients. He said this test is going to change the way cancer is treated until a cure is available. He was also happy for me.
This new lab checks for and tests any over expressed proteins and all genetic abnormalities. This doesn't sound like such a novel idea, but here's the catch. They check for all abnormalites in relation to all cancers. For instance, I knew I was KRAS mutated because they checked, they had also checked for a couple of other colon cancer mutations. The only thing this did was eliminate possible treatments. This new lab recommends treatments based on all abnormalities. Not only does it recommend treatments, it also gives probabilities for positive responses to the treatment. It recommends probable combinations and treatment durations. I do not have the specifics, I will get them on monday. The report is fifty pages long and I will find a way to post it online. I have an old website that I haven't used in years. I think it is still active, if not I will reactivate it and provide a link, but this is what I know.
For the time being, my cancer is considered very unique. It may turn out to be entirely ordinary once other folks get tested but for now my cancer is unique. My cancer does possess genetic abnormalities consistent with colon cancer, but it is more consistent with breast cancer and even more consistent with renal "kidney" cancer. There was a 75% chance that I have a positive response to colon cancer treatment, but there is an 80% chance I have a positive response to breast cancer treatment, and a 97% chance I have a positive response to renal cancer treatment. I also have a better than 50% for a lymphoma treatment and another treatment that I can't remember the name of, it was long and I had never heard of it.
This test also checks for protein expressions and recommends all know inhibitors, approved or in the works. There are 14 protein inhibitors that have between a 65 and 91 % chance of having a positive response.
By the way, I am not KRAS mutant. So I should respond to erbitux, as it turns out the test I had originally had a 35% chance of being wrong.
I meet with my ultra excited oncologist monday at 10:45. He told me over the phone that I'm going to start the treatment for renal cancer along with an already approved protein inhibitor next week.
The bad news, insurance will not cover any of these tests, treatments or procedures. My Dr got the drug companies to front the first 2 months of treatment, after that I'm on my own. Treatment is about $10,000 a month.
I will post everything I know on monday or tuesday.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    great news!
    Congratulations, buzzard, on what appears to be some fantastic news. Incidentally, some of the elements you reference, including the relationship between the KRAS gene and colorectal cancer, genetic and epigenetic solutions, and targeted therapies are covered rather extensively in recent issues of ACS's CURE magazine (I believe it is at curetoday.com online as well). Just for further reference.

    As for financial support, buzzard, if you get to a point where that is a problem, consider the following among other that I am sure are out there:

    http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

    This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

    Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

    Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

    Live Strong - www.livestrong.org - offers one-on-one support.

    American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

    Best wishes for success with this approach, buzzard!

    Take care,

    Joe
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    soccerfreaks said:

    great news!
    Congratulations, buzzard, on what appears to be some fantastic news. Incidentally, some of the elements you reference, including the relationship between the KRAS gene and colorectal cancer, genetic and epigenetic solutions, and targeted therapies are covered rather extensively in recent issues of ACS's CURE magazine (I believe it is at curetoday.com online as well). Just for further reference.

    As for financial support, buzzard, if you get to a point where that is a problem, consider the following among other that I am sure are out there:

    http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

    This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

    Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

    Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

    Live Strong - www.livestrong.org - offers one-on-one support.

    American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

    Best wishes for success with this approach, buzzard!

    Take care,

    Joe

    Joe....I hope I didn't lead you astray...
    I copied and pasted this in here from a post made by John Nimmons. It is he that is going through this process. My cancer has been removed and I am NED for going on 8 months now and hopefully forever. This was just a post to help others and to spread the news to maybe put some hope in some that have lost all hope...I would however like to copy this and place it into the colorectal thread for his benefit if you don't mind, or better yet you might. Im sure that the more people that can be reached with this news and help maybe the more word will be spread and possibly more financial aide will evolve. Again, Im sorry if I mislead you to think it was me, but thanks for the help nonetheless, I certainly appreciate it as will John...... Respectfully, Clift
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    Buzzard said:

    Joe....I hope I didn't lead you astray...
    I copied and pasted this in here from a post made by John Nimmons. It is he that is going through this process. My cancer has been removed and I am NED for going on 8 months now and hopefully forever. This was just a post to help others and to spread the news to maybe put some hope in some that have lost all hope...I would however like to copy this and place it into the colorectal thread for his benefit if you don't mind, or better yet you might. Im sure that the more people that can be reached with this news and help maybe the more word will be spread and possibly more financial aide will evolve. Again, Im sorry if I mislead you to think it was me, but thanks for the help nonetheless, I certainly appreciate it as will John...... Respectfully, Clift

    no problem!
    As indicated, I got some of the pointers from someone else here as well, so feel free to spread the info to my friends in the colorectal board.

    Congratulations instead, by the way, on your NED. I am also just about two years NED (as of the end of January it will be two years).

    Take care,

    Joe

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