My onc at Northwestern is on board

tachilders
tachilders Member Posts: 313
in Colorectal Cancer #1

Talked to her yesterday after getting my CT scans (no results yet) and she went from hesitant to excited and fully on board with me going to Hallwang.  She seemed genuinely excited about what they are doing over there, and felt that the Removab to reduce tumor load would be beneficial regardless of whether the DC vaccine works.  Her take was the same as mine in that it is very difficult to predict who will respond to a cancer vaccine, but that one key was to reduce tumor load as much as possible before trying the vaccine (i.e. help the immune system by getting rid of most of the tumors first, which is what Removab should do).  She is getting ready to start a trial to look at Vitamin D (they are testing my level now), and we also discussed the possibility of adding cimetidine, celecoxib, or even a statin to my regimen, based somewhat on what the RGCC chemosensitivity testing shows might work best.  She said there was some pretty good data showing that statins have anti-cancer efects in mCRC.  Felt really good to have her be open and supportive of this decision.  Now its all about the money, which I plan to find out about today if possible....

Tedd

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #2
    dont worry about the money, relax and pray

    give your onc a big hug.

    ask dr greg about vogel  on way in frankfurt.

    land early am,  and straight hospital, it will save you 1000s.

    ted i have passed the ball to you and ren, i am so glad you did not drop it.

    after buzzs passing i needed some hope.

    welcome to the black forest club, your path is there somewhere.

    god i am excited for you, whats your ons name, they are about to get blacklisted.

    they are a hero. so are you.

    the first step is the hardest on your healing path, goodluck and my prayers.

    dont drop the ball ted, this is not about me, it is not about you or ren, is it???

    hugs,

    pete

  • janie1
    janie1 Member Posts: 753 Member
    #3
    yay--doc on board
    .That sounds like a good plan, Tedd. I, too hope to reduce tumor load on a trial, and then possibly go in for the kill with a vaccine, and supplements (maybe dreaming, but ya gotta dream to move forward).
    Did you read the thread on DCA here recently? Might be good in the arsenal.
    Keep on keepin on. Pulling for you.
    Love that your onc is on board. I think that's admirable. It shows big thinking.
    Maybe more docs will get off the road to nowhere. At the very least, they should at least think, "if i cant beat 'em, than I'll join 'em".
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Sounds like a great
    Sounds like a great openminded doctor! I hope things go very well for you. You didn't have any problem getting your life insurance to pay out?

    Best of luck Tedd!
  • tommycat
    tommycat Member Posts: 790 Member
    #5
    I have been following your

    I have been following your story and this s fantastic news....sounds very promising for you!!!!

    Tommycat

  • RobinKaye
    RobinKaye Member Posts: 93
    #6
    Your onc...

    Tedd, can you share your oncologists name.  I'd like to have it in case my husband needs an onc who will think outside the box, not too much faith that his current onc would ever see the validity in anything alternative...I had to push just for the Vitamin D test, didn't occur to him.

     

    Robin

  • manwithnoname
    manwithnoname Member Posts: 402
    #7
    RobinKaye said:

    Your onc...

    Tedd, can you share your oncologists name.  I'd like to have it in case my husband needs an onc who will think outside the box, not too much faith that his current onc would ever see the validity in anything alternative...I had to push just for the Vitamin D test, didn't occur to him.

     

    Robin

    Ha

    "I had to push just for the Vitamin D test, didn't occur to him."

    Yup and they would never dream to check vitamin levels, amino acids, thyroid, diet, heavy metal toxicity or ANYTHING because they don't believe any of it will make a difference OR that it has anything to do with cancer.

    If your Onc. did any test's like these without you asking please speak up or I will tar them all with the same incompetent brush.

    Tedd, well done for finding an Onc. that has an interest other than chemicals.

     

  • tachilders
    tachilders Member Posts: 313
    #8
    Couple of updates...  Dr.

    Couple of updates...  Dr. Schwarz asked for my vitamin D level to be tested, and also for a celiac antibody test.  My onc at Northwestern did both of those tests for me yesterday, and basically without question at all.  They also did a complete metabolic panel (even though I had one last week) just because I was a little concerned about my bilirubin level (which thankfully has dropped 0.3 units from last Wednesday to yesterday).  If you remember, I had to get a biliary stent because the tumor in my liver had blocked my bile duct, and those stents eventually get clogged.  I wanted to make sure that wasn't happening, especially right before I go on vacation at the end of this month.  My oncologist at Northwestern Memorial Hospital in Chicago is Dr. Halla Nimeiri, and she is also part of the NW Robert H. Lurie Cancer Center (at the hospital).  She and her NP Tanya have been absolutely fantastic about answering any questions I have had, and have shown a real interest in potential alternative therapies.  Dr. Nimeiri wanted to make sure first that the treatments at Hallwang would  not do more harm than good, but once I described Pete's case as well as what the clinic actually was planning to do, she was fully on-board.  Lastly, I just called my life insurance company and they are processing my claim today, and I should be getting a check mailed to me Monday/Tuesday of next week!!!  My onc at NW also filled out the required papers and sent them back to me within days for the insurance claim, as she knew I needed the money fast for this trip.  She is starting a trial looking at vitamin D levels and their effect on mCRC in the next few months...

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #9
    tachilders said:

    Couple of updates...  Dr.

    Couple of updates...  Dr. Schwarz asked for my vitamin D level to be tested, and also for a celiac antibody test.  My onc at Northwestern did both of those tests for me yesterday, and basically without question at all.  They also did a complete metabolic panel (even though I had one last week) just because I was a little concerned about my bilirubin level (which thankfully has dropped 0.3 units from last Wednesday to yesterday).  If you remember, I had to get a biliary stent because the tumor in my liver had blocked my bile duct, and those stents eventually get clogged.  I wanted to make sure that wasn't happening, especially right before I go on vacation at the end of this month.  My oncologist at Northwestern Memorial Hospital in Chicago is Dr. Halla Nimeiri, and she is also part of the NW Robert H. Lurie Cancer Center (at the hospital).  She and her NP Tanya have been absolutely fantastic about answering any questions I have had, and have shown a real interest in potential alternative therapies.  Dr. Nimeiri wanted to make sure first that the treatments at Hallwang would  not do more harm than good, but once I described Pete's case as well as what the clinic actually was planning to do, she was fully on-board.  Lastly, I just called my life insurance company and they are processing my claim today, and I should be getting a check mailed to me Monday/Tuesday of next week!!!  My onc at NW also filled out the required papers and sent them back to me within days for the insurance claim, as she knew I needed the money fast for this trip.  She is starting a trial looking at vitamin D levels and their effect on mCRC in the next few months...

    Yaaaaaaah!!!!
    I am so excited
    Yaaaaaaah!!!!

    I am so excited for you! Such fantastic news. Isn't hope a wonderful thing?

    Chelsea

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