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News and (maybe) action

Buckwirth
Buckwirth Member Posts: 1,258
Moores was fruitful.  Not because I got a trial (I did not, and I no longer qualify for the one at USC) but because the oncologist there disagreed with my current team on having used up all my options.  He believes I could still get benefit from FOLFOX.  I discussed it with my local doc, and he agreed to give it a shot. If it works it should solve the edema issue.

The biggest hurdle seemed to be one of logistics, as I am still not ambulatory.  My Onc had a solution; home infusion.  Now, dependent on insurance approval, I should start next week.

As to the mobility issue: 

I went to the pain guy yesterday and adjusted the bolus settings, doubling the dose, reducing the time limit between from 4 hours to 40 minutes and reducing the daily limit from 6 to 4.  I can tell you it was a heck of a lot easier getting in the house than it was getting out of it, so it seems to be working.

Blake

Comments

  • pepebcn
    pepebcn Member Posts: 6,331
    Can you ask for two shots instead of one? , normally on me
    I have never seen results on CEA until after 2 or 3 shots , just a suggestion from a friend!
    Hugs Blake!
    BtW as per I see you have been on folfox already why they stop it? progression?.
    Hugs!
  • Lovekitties
    Lovekitties Member Posts: 3,364
    Dear Blake
    Sorry that the trials didn't work out but very glad that it was suggested that you still have a traditional option left.

    Also very glad to hear that you are now able to get a better handle on the pain.

    Best wishes for good results.

    Hugs,

    Marie who loves kitties
  • Buckwirth
    Buckwirth Member Posts: 1,258
    pepebcn said:

    Can you ask for two shots instead of one? , normally on me
    I have never seen results on CEA until after 2 or 3 shots , just a suggestion from a friend!
    Hugs Blake!
    BtW as per I see you have been on folfox already why they stop it? progression?.
    Hugs!

    Pepe
    Stopped at the current standard of care, which is about 12 rounds here in the US.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Dear Blake
    Sorry that the trials didn't work out but very glad that it was suggested that you still have a traditional option left.

    Also very glad to hear that you are now able to get a better handle on the pain.

    Best wishes for good results.

    Hugs,

    Marie who loves kitties

    Blake was there a specific
    Blake was there a specific reason you don't qualify for a clinical trial??
  • Annabelle41415
    Annabelle41415 Member Posts: 6,711 **
    Update
    Thanks for the update and glad that they have a plan for you. Hoping you get some relief from it and that insurance will cooperate.

    Kim
  • lauragb
    lauragb Member Posts: 370
    Hope this new pain set-up
    Hope this new pain set-up had good results for you. And it will be nice for you to receive treatment at home. Be thinking of you, keeping you in the light that these improvements come to fruition.

    Laura
  • Buckwirth
    Buckwirth Member Posts: 1,258
    smokeyjoe said:

    Blake was there a specific
    Blake was there a specific reason you don't qualify for a clinical trial??

    Mostly
    The rapid decline in general health.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425
    Buckwirth said:

    Mostly
    The rapid decline in general health.

    Well, hope the Folfox kicks
    Well, hope the Folfox kicks cancers butt and things improve for you....maybe you'll get to a place where you can participate in that trial....
  • tko683
    tko683 Member Posts: 264
    Glad you have another option
    Blake,
    Hoping that the FOLFOX works for you and glad you got another opinion. Home infusion sounds quite convenient in your situation. Wishing you the best. hugs, Teri
  • Phoebesnow
    Phoebesnow Member Posts: 600
    tko683 said:

    Glad you have another option
    Blake,
    Hoping that the FOLFOX works for you and glad you got another opinion. Home infusion sounds quite convenient in your situation. Wishing you the best. hugs, Teri

    Good news
    Sounds good Blake. What about steroids to give you strength?
  • buckeye2
    buckeye2 Member Posts: 428
    I hope you get feeling
    I hope you get feeling better. I sure would miss your posts on this discussion board. Lisa
  • janderson1964
    janderson1964 Member Posts: 2,215
    I am glad to hear that they
    I am glad to hear that they are at least tryinf folfox. The 2 new targeted therapy drugs are supposed to be approved this year. Hang in there and hopefully you will be a candidate for one or both.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    I am glad to hear that they
    I am glad to hear that they are at least tryinf folfox. The 2 new targeted therapy drugs are supposed to be approved this year. Hang in there and hopefully you will be a candidate for one or both.

    Sorry, what new targeted
    Sorry, what new targeted therapy drugs??
  • karen40
    karen40 Member Posts: 211
    Blake
    I'm glad your feeling better and hope you continue to feel better on the new pain regimen. Prayers that FOLFOX kicks some cancer a$$.
    Karen
  • janderson1964
    janderson1964 Member Posts: 2,215
    smokeyjoe said:

    Sorry, what new targeted
    Sorry, what new targeted therapy drugs??

    I believe Regorofab is the
    I believe Regorofab is the name of one of them produced by Bayer which got such good results in tirals that the FDA stopped the trials and put it on the fast track for approval. You can find out more about the drugs on the Colon Cancer Alliance web site.