3 year trials,

Boomersdad
Boomersdad Member Posts: 25
in Kidney Cancer #1
Hi its Boomersdad here (Errol)I went for my checkup Yesterday 4 weeks after Kidney and 7cm cancer removel, I thought it was a check up but reading between the lines it was more like another doctor trying to get me on a 3 year trial course of SORAFENIB But I have gone on line today to check out a lot more info on the drug,it seems there is a lot of side effects to it to many to mention, as I am still working and not retired I have decided not to take part in the tests because I am still working full time, ( off sick at the moment)The good news I got from looking at my scan said they could not see any signs of the big C any where else,that isnt to say its not there, Im off work for another 2 weeks yet,

Comments

  • LISAinTN
    LISAinTN Member Posts: 143
    #2
    Great news!
    Hi Errol,

    I'm so glad your scans showed no cancer! That's such great news.

    I'm fairly new here yet, (7 months post-op), so please excuse the questions, but why do they want you to do a clinical trial of a med if you show NED? I was just curious.

    Blessings,
    Lisa
  • Boomersdad
    Boomersdad Member Posts: 25
    #3
    LISAinTN said:

    Great news!
    Hi Errol,

    I'm so glad your scans showed no cancer! That's such great news.

    I'm fairly new here yet, (7 months post-op), so please excuse the questions, but why do they want you to do a clinical trial of a med if you show NED? I was just curious.

    Blessings,
    Lisa

    I asked the same
    I also said to the doc, if I am clear why ask me to go onto a trial, he said it would see if the growth comes back or not, today I told them I was not going onto it, so I am back with my surgion for future reports, I thought it was a strange question,does NED mean clear, Im also new on here but the information every body as posted as been very helpfull,
  • Michael6701
    Michael6701 Member Posts: 26
    #4
    Boomersdad said:

    I asked the same
    I also said to the doc, if I am clear why ask me to go onto a trial, he said it would see if the growth comes back or not, today I told them I was not going onto it, so I am back with my surgion for future reports, I thought it was a strange question,does NED mean clear, Im also new on here but the information every body as posted as been very helpfull,

    NED?
    I'm fairly new to this site as well; I just had my tumor removed the end of last June and only recently became interested in sharing. I looked it up on Yahoo and found "non-evoluting disease" but it didn't offer a definition. I'm not sure what that really means. Can anyone offer some clarity re: that term for me?
  • LISAinTN
    LISAinTN Member Posts: 143
    #5
    Michael6701 said:

    NED?
    I'm fairly new to this site as well; I just had my tumor removed the end of last June and only recently became interested in sharing. I looked it up on Yahoo and found "non-evoluting disease" but it didn't offer a definition. I'm not sure what that really means. Can anyone offer some clarity re: that term for me?

    NED
    Sorry, I should have clarified that. It stands for No Evidence Of Disease.
  • Michael6701
    Michael6701 Member Posts: 26
    #6
    LISAinTN said:

    NED
    Sorry, I should have clarified that. It stands for No Evidence Of Disease.

    NED Definition
    Thanks Lisa, that makes much better sense.


    Michael
  • newenglandguy
    newenglandguy Member Posts: 66
    #7
    Michael6701 said:

    NED Definition
    Thanks Lisa, that makes much better sense.


    Michael

    Erroyl - went back through
    Errol - went back through your posts that I could find, and didn't find one where you mentioned what size your tumor was, what grade it was, etc. Do you mind sharing that info? I'm curious why they would recommend a trial, if you are being considered NED. Do you know what dosage they were suggesting? If it's preventative, I'm wondering if it was scaled back on the dosage - as that could determine what the severity of the SE's would be.

    (Side note - does anyone know why, if I search "Boomersdad", I don't come up with all of Errol's 11 posts? I've had this problem when searching looking for other members posts)'
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #8
    newenglandguy said:

    Erroyl - went back through
    Errol - went back through your posts that I could find, and didn't find one where you mentioned what size your tumor was, what grade it was, etc. Do you mind sharing that info? I'm curious why they would recommend a trial, if you are being considered NED. Do you know what dosage they were suggesting? If it's preventative, I'm wondering if it was scaled back on the dosage - as that could determine what the severity of the SE's would be.

    (Side note - does anyone know why, if I search "Boomersdad", I don't come up with all of Errol's 11 posts? I've had this problem when searching looking for other members posts)'

    Member-post searching
    newenglandguy, it's simply that they haven't set up a search algorithm to work that way. You may want to suggest that they implement one.
  • newenglandguy
    newenglandguy Member Posts: 66
    #9
    Texas_wedge said:

    Member-post searching
    newenglandguy, it's simply that they haven't set up a search algorithm to work that way. You may want to suggest that they implement one.

    Did email the folks at CSN and asked to have algorithm added
    Texas-wedge - thanks for that decision, I dod contact CSN and asked them if they might consider adding that algorithm. I think it would be very handy, as you'd be able to read through a user's post and maybe not have to post a question. Quite a few times I want to understand maybe the individuals initial pathology report, and tie it back to what they're posting.
  • Boomersdad
    Boomersdad Member Posts: 25
    #10
    newenglandguy said:

    Did email the folks at CSN and asked to have algorithm added
    Texas-wedge - thanks for that decision, I dod contact CSN and asked them if they might consider adding that algorithm. I think it would be very handy, as you'd be able to read through a user's post and maybe not have to post a question. Quite a few times I want to understand maybe the individuals initial pathology report, and tie it back to what they're posting.

    Tumor size
    Hi Newengland, I think some where I might of said my tumor was 7.0 the doc said it was better to take the lot out as the tumor was over powering the kidney, Im walking for about 90 mins per day now but am finding it very tiring,

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