janderson update

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Comments

  • lilacbrroller
    lilacbrroller Member Posts: 412 Member

    Thanks Ron. That means a lot

    Thanks Ron. That means a lot to me coming from the ultimate survivor.

    congrats

    Hey, Jeff! congrats on beating the system/insurance company.  Always a good thing!

    And, welcome to the trial!

    atb

    Karin

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    Jeff, I am so excited that

    Jeff, I am so excited that you are headed for the SBRT, it worked so well for my Husband on a very tricky tumor. The best part is that he said that the hardest part was stayingin the machine for the 45 minutes, but other wise no side affects at all. His first scan after treatment was clear, his next is this Thursday and will let you know when I know how it looks. His last CEA was at 9, wish it were lower but so grateful for where we are. You will be in my prayers. Also, did I see you mention some lab going up which was good (MCV) what is that?

    The t cell treatment makes me think of a report I watched a couple of weeks ago about injecting the polio virus into tumors to get the immune system to attack tumors and was having great success. Have you heard anything about that, or anyone else?

    Thanks for being such a pioneer for us all. :)

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Hi Jeff, thank you for this

    Hi Jeff, thank you for this update, sounds like everything is moving. You always impress me with the way you advocate yourself and how quickly you take action. Best luck with everything. I will keep praying for you and everyone else in the forum.

    Thanks for keeping us in your

    Thanks for keeping us in your prayers

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    maglets said:

    Jeff

    Jeff you are truly amazing to me.....it is a wonder and a priviledge to read your path and your advocacy.....I so admire you.  Just as others have said you really blaze a path for others here.  I am not sure I would have the wit or energy to lift a finger compared to what you are researching and causing to come about.....

    sending love ......mags

    Thank you so much for your

    Thank you so much for your kind words (As always). You know your thoughts/words mean so much to me Mags.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Yolllmbs said:

    Jeff

    You're a perfect example of fighting for our treatments,  Advocating is so easy when it's for someone we love.  I admire you're strength in fighting for your own insurance and doctors.  My prayers and good wishes.

     

    Yolanda

    Thank you for your prayers

    Thank you for your prayers and kind words Yolanda.

  • Phil64
    Phil64 Member Posts: 838 Member

    Thanks Phil. Love and light

    Thanks Phil. Love and light to you as well.

    BTW janderson stands for Jeff Anderson.

    I knew that. I'm so silly. 

    I knew that. I'm so silly.  Sorry Joe. just kidding. Jeff. Please forgive me.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Jeff, I am so excited that

    Jeff, I am so excited that you are headed for the SBRT, it worked so well for my Husband on a very tricky tumor. The best part is that he said that the hardest part was stayingin the machine for the 45 minutes, but other wise no side affects at all. His first scan after treatment was clear, his next is this Thursday and will let you know when I know how it looks. His last CEA was at 9, wish it were lower but so grateful for where we are. You will be in my prayers. Also, did I see you mention some lab going up which was good (MCV) what is that?

    The t cell treatment makes me think of a report I watched a couple of weeks ago about injecting the polio virus into tumors to get the immune system to attack tumors and was having great success. Have you heard anything about that, or anyone else?

    Thanks for being such a pioneer for us all. :)

     

    MCV (Mean Corpusal Volume) is

    MCV (Mean Corpusal Volume) is part of CBC test. I am only doing Xeloda right now and there were a couple of studies that rising MCV was a good indicator that the Xeloda is working kind of like the rash with Erbitux or Vectibix. Karin is the person who is getting ready to do the T-cell trial. I have read about and followed the vaccines for over a year now. The problem with them along with a lot of these immunotherapies that are having great success is that the success rate is good for Melanomas and blood cancer but no so good for colon and other solid cancers. They are having to come up sith drug cocktails to go with the vaccines and immuntherapies to hopefully get a better response from colon cancer which is being studied and worked on. I believe the T-cell trial that I mentioned and that Karin is getting ready to start didn't look good for colon cancer initially but they have been tweaking it by harvesting the patients own tumor and T-cells. Modifying the T-cells to attack certain mutations found in the patients tumor and then injecting the T-cells back into the patient. This is true personalized treatment. It is kind of like letting a hound dog smell the scent from an article of clothing that a missing person was wearing so the dog can track the person.

    It looks like we are on the brink of some exciting break throughs even for colon cancer. My oncologist said I just need to hang on for another few years. 

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member

    MCV (Mean Corpusal Volume) is

    MCV (Mean Corpusal Volume) is part of CBC test. I am only doing Xeloda right now and there were a couple of studies that rising MCV was a good indicator that the Xeloda is working kind of like the rash with Erbitux or Vectibix. Karin is the person who is getting ready to do the T-cell trial. I have read about and followed the vaccines for over a year now. The problem with them along with a lot of these immunotherapies that are having great success is that the success rate is good for Melanomas and blood cancer but no so good for colon and other solid cancers. They are having to come up sith drug cocktails to go with the vaccines and immuntherapies to hopefully get a better response from colon cancer which is being studied and worked on. I believe the T-cell trial that I mentioned and that Karin is getting ready to start didn't look good for colon cancer initially but they have been tweaking it by harvesting the patients own tumor and T-cells. Modifying the T-cells to attack certain mutations found in the patients tumor and then injecting the T-cells back into the patient. This is true personalized treatment. It is kind of like letting a hound dog smell the scent from an article of clothing that a missing person was wearing so the dog can track the person.

    It looks like we are on the brink of some exciting break throughs even for colon cancer. My oncologist said I just need to hang on for another few years. 

    The study I saw the

    The study I saw the documentery is at Duke... started out using it on brain tumors. I remember them saying that it was being used successfully on other tyoes of cancer and colon cancer was mentioned. I googled it quick and found this link...   http://www.cancer.duke.edu/btc/modules/Research3/index.php?id=41

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    Thanks so much for the

    Thanks so much for the update!! I have been thinking of you and your journey a lot .. the insurance issue is just aweful!  Why they do this to people with so many other things on their plate is disturbing.

    The trial sounds awesome!  I have been so interested in this movement with immunology since I first heard of it a few years back.  My onc. laughed with his nurse over it when I brought it up for his thoughts.  I lost all respect for him that day.  Laughing at such a serious, life changing, radical movement to possible cure of this horrific disease? Really doc? I found a new oncologist. I am so very pleased to see things are getting better for you in the fight. 

    I will be keeping you in my thoughts and prayers!

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Update

    Thank you for the update and it sure sounds like like you have a lot going on.  I'm praying that all of your future treatments go great.  You sure are a positive person and love that you keep fighting for your rights.  Don't ever back down.

    Kim

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Update

    Thank you for the update and it sure sounds like like you have a lot going on.  I'm praying that all of your future treatments go great.  You sure are a positive person and love that you keep fighting for your rights.  Don't ever back down.

    Kim

    Thanks Kim. I feel that I am

    Thanks Kim. I feel that I am not just fighting for my rights but all of our rights living with cancer.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
    Yay!

    I'm so glad that things are heading in the right direction. You just keep on plugging away. I really hope they're able to get it all out so that you can be NED FOREVER! Stay as positive as you have been! Good luck!

     

    Lin

  • traci43
    traci43 Member Posts: 773 Member
    Good luck!

    Hope these treatments work, and that you can get into the trial, if that's what you want.  I think if I had tumors, I would be heading that way.  Sounds promising.  Good luck and I hope they figure out the rib issue.  Traci

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Thanks Jeff for the update

    SRBT is something I'll be asking my oncologist about tomorrow.  As always I appreciate your I for and keeping us updated on how you are doing.

    Winter Marie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member

    Thanks Jeff for the update

    SRBT is something I'll be asking my oncologist about tomorrow.  As always I appreciate your I for and keeping us updated on how you are doing.

    Winter Marie

    I am approved for SBRT as

    I am approved for SBRT as stated above but the machine is down at the hospital I was approved at so I am playing the waiting game. In the meantine NIH contacted me and they are testing me for 5 different immunotherapies including the one TIL that Karin is doing. I am not saying it is time for me get on a trial yet but it is always good to test the waters and get as many irons in the fire as possible.

  • sflgirl
    sflgirl Member Posts: 220 Member

    I am approved for SBRT as

    I am approved for SBRT as stated above but the machine is down at the hospital I was approved at so I am playing the waiting game. In the meantine NIH contacted me and they are testing me for 5 different immunotherapies including the one TIL that Karin is doing. I am not saying it is time for me get on a trial yet but it is always good to test the waters and get as many irons in the fire as possible.

    Weird,the machine is down

    hopefully for a very short time.

    Best of luck to you with SBRT, very promising.

    Andrea

  • YoVita
    YoVita Member Posts: 590 Member
    Best of luck to you Jeff

    Congratulations on your fight with the insurance company.  I hope you get a good response from the strategies you're trying now.  You are a trailblazer for the rest of us.