post-op appt and path report

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Comments

  • cww71964
    cww71964 Member Posts: 97
    garym said:

    Go for it...
    Wayne,

    I love the phrase "Attack with extreme prejudice!" when it comes to this disease. You have made a good decision, put the pedal to the metal and give it hell!!

    Gary

    trial
    My clinical oncologist wanted lab work and a ct scan of the chest before I can enter the trial. I had the lab work done last Friday. I was scheduled for the ct scan today but my insurance did not preauthorize it. They are supposed to speak with the oncologist tomorrow to find out the details of the trial before they will approve it. Hopefully I will know something by this week. Very frustrating to say the least.
  • foxhd
    foxhd Member Posts: 3,181 Member
    cww71964 said:

    trial
    My clinical oncologist wanted lab work and a ct scan of the chest before I can enter the trial. I had the lab work done last Friday. I was scheduled for the ct scan today but my insurance did not preauthorize it. They are supposed to speak with the oncologist tomorrow to find out the details of the trial before they will approve it. Hopefully I will know something by this week. Very frustrating to say the least.

    pre -auth
    Insurance pre-authorization is a PIA and nonsense. I had my MDX held up by a case manager who required a pre-auth of a treatment that the insurance didn't have to pay for. I had to have many different scans, blood work and biopsies. The kicker is that the trial sponser was going to pay for ALL my treatments which could be in the hundreds of thousands of dollars... If I didn't get in the trial, then I was going to have to be treated with Interleuken 2 which insurance would have to pay for. And that was hundred of thousand of dollars...How stupid is that? Make several phone calls yourself. Be your own advocate.
  • B.E.E
    B.E.E Member Posts: 1
    foxhd said:

    no treatment
    That's not necessarily the case. The trial I was offered in the spring was for people who had nephectomies and had no evidence of mets. I guess a study to see if they could keep future mets at bay. I'm thinking that if the study was offered more locally, I just may have entered it........as I am thinking about it, It was my local oncologist who steered me to that study. She was surprised and disappointed that I didn't enter it. It just had too much travel, potential miserable side effects, and a variety of doses and placebos. Just had no idea what I might have been given. The bottom line was that if I was only going to live another year, I was going to have a great summer and not feel miserable and unable to do the things that are important to me. ie: golf and motorcycles.

    Hi, I'm writting on behalf
    Hi, I'm writting on behalf of my mom would also has refused surgery and "make you ill" drugs. Her tumor is 8x9cm and on the upper left kidney. The injury has spread to her lungs and also to her right femur. She found out she had the cancer because her femur broke. They inserted a rod into the bone and she underwent radiation there to ensure the steel pins didn't push the remaining cancer into the bone further. The only reason why she had the radiation treatment is becasue she thought she was getting a laperscopic surgery on the kidney and it meant that by the end of February she would have 66% of the cancer out of her body. Big mistake as the radiation depleated every vitamin and mineral in her and there is massive swelling. After the CT scan last Friday the urologist said he'd have to do a full slice surgery because the tumor is touching the spleen meaning the spleen would have to go too. This would be 2 months bed rest plus 2 months limited mobility on top of a gimp leg. We live in western Canada and there are no drugs that work. I have her on a no dairy, sugar and starch diet as well as vitamin and mineral supplements. We trust in the power of the immune system.
  • cww71964
    cww71964 Member Posts: 97
    foxhd said:

    pre -auth
    Insurance pre-authorization is a PIA and nonsense. I had my MDX held up by a case manager who required a pre-auth of a treatment that the insurance didn't have to pay for. I had to have many different scans, blood work and biopsies. The kicker is that the trial sponser was going to pay for ALL my treatments which could be in the hundreds of thousands of dollars... If I didn't get in the trial, then I was going to have to be treated with Interleuken 2 which insurance would have to pay for. And that was hundred of thousand of dollars...How stupid is that? Make several phone calls yourself. Be your own advocate.

    trial
    All approved and scheduled for ct scan in the morning!
  • cww71964
    cww71964 Member Posts: 97
    cww71964 said:

    trial
    All approved and scheduled for ct scan in the morning!

    scan
    Well my chest scan results were excellent, so said the clinical research dept at the hospital where the trial is being conducted, but..... I need a pelvic and abdomen scan which the dr. forgot to order. I am scheduled for those on Friday morning and if they go well, I sign the disclosure papers and begin the trial.
  • foxhd
    foxhd Member Posts: 3,181 Member
    cww71964 said:

    scan
    Well my chest scan results were excellent, so said the clinical research dept at the hospital where the trial is being conducted, but..... I need a pelvic and abdomen scan which the dr. forgot to order. I am scheduled for those on Friday morning and if they go well, I sign the disclosure papers and begin the trial.

    scan
    !!!!!!!!!!!!!
  • cww71964
    cww71964 Member Posts: 97
    foxhd said:

    scan
    !!!!!!!!!!!!!

    trial
    Happy to report all my ct scans required by the trial (chest, abdomen, pelvis) came back clear. I just signed the paperwork and I will begin on Monday. I am excited and scared at the same time. My only no no's while on the trial are no citrus, which sucks as I juice an orange every morning, and no Xanax which I sometimes take for anxiety attacks. They also told me that in p3 trials, patients usually tolerate the drugs well. I am keeping my fingers crossed that I will.

    Blessings to all,
    Wayne
  • DogRescuer
    DogRescuer Member Posts: 52 Member
    cww71964 said:

    trial
    Happy to report all my ct scans required by the trial (chest, abdomen, pelvis) came back clear. I just signed the paperwork and I will begin on Monday. I am excited and scared at the same time. My only no no's while on the trial are no citrus, which sucks as I juice an orange every morning, and no Xanax which I sometimes take for anxiety attacks. They also told me that in p3 trials, patients usually tolerate the drugs well. I am keeping my fingers crossed that I will.

    Blessings to all,
    Wayne

    You can do this!
    You can do this, Wayne. I'm so glad to hear the scans are clear and you're ready for the trial.

    I think I'd be whining more about giving up my Xanex than orange juice. You just might 'discover' another favorite--like passion fruit juice. Keep us updated on how you're doing.

    Stay strong!
  • garym
    garym Member Posts: 1,647

    You can do this!
    You can do this, Wayne. I'm so glad to hear the scans are clear and you're ready for the trial.

    I think I'd be whining more about giving up my Xanex than orange juice. You just might 'discover' another favorite--like passion fruit juice. Keep us updated on how you're doing.

    Stay strong!

    Go get'em tiger...
    Wayne,

    Congrats on the test results and starting the trial. You have a lot of positive energy right now and that will serve you well as things progress, don'tcha just love it when a plan comes together?
  • livealive
    livealive Member Posts: 127
    cww71964 said:

    trial
    Happy to report all my ct scans required by the trial (chest, abdomen, pelvis) came back clear. I just signed the paperwork and I will begin on Monday. I am excited and scared at the same time. My only no no's while on the trial are no citrus, which sucks as I juice an orange every morning, and no Xanax which I sometimes take for anxiety attacks. They also told me that in p3 trials, patients usually tolerate the drugs well. I am keeping my fingers crossed that I will.

    Blessings to all,
    Wayne

    Trial
    That's good to know Wayne. No Grapefruit, Orange is fine I thought. Maybe check ?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    livealive said:

    Trial
    That's good to know Wayne. No Grapefruit, Orange is fine I thought. Maybe check ?

    Citrus
    No, Raj, maybe not. These interaction reports are being steadily broadened in scope and include some orange juices (e.g. Seville, from memory - would make sense as it's a sour orange, more like grapefruit) and sometimes also apple. So, it's probably wisest, pro tem, to heed the advice of the drug manufacturers and prescribers until the picture is clearer.

    Very busy just now but will indicate later when we can talk.
  • livealive
    livealive Member Posts: 127

    Citrus
    No, Raj, maybe not. These interaction reports are being steadily broadened in scope and include some orange juices (e.g. Seville, from memory - would make sense as it's a sour orange, more like grapefruit) and sometimes also apple. So, it's probably wisest, pro tem, to heed the advice of the drug manufacturers and prescribers until the picture is clearer.

    Very busy just now but will indicate later when we can talk.

    No Citrus - But, No Apples ? Berries ? Lemons and Lime ?
    No Citrus - But, No Apples ? Berries ? Lemons and Lime ?
  • LISAinTN
    LISAinTN Member Posts: 143
    cww71964 said:

    trial
    Happy to report all my ct scans required by the trial (chest, abdomen, pelvis) came back clear. I just signed the paperwork and I will begin on Monday. I am excited and scared at the same time. My only no no's while on the trial are no citrus, which sucks as I juice an orange every morning, and no Xanax which I sometimes take for anxiety attacks. They also told me that in p3 trials, patients usually tolerate the drugs well. I am keeping my fingers crossed that I will.

    Blessings to all,
    Wayne

    Yippee!
    Wayne,

    So happy your scans came back clear. Will be keeping you in my thoughts and prayers. Take care.

    Blessings,
    Lisa
  • cww71964
    cww71964 Member Posts: 97
    LISAinTN said:

    Yippee!
    Wayne,

    So happy your scans came back clear. Will be keeping you in my thoughts and prayers. Take care.

    Blessings,
    Lisa

    trial drug
    Took my second dose today and so far, not feeling a thing. Maybe I am getting the placebo. Anyone know how long it would take before any side effects would surface?
  • livealive
    livealive Member Posts: 127
    cww71964 said:

    trial drug
    Took my second dose today and so far, not feeling a thing. Maybe I am getting the placebo. Anyone know how long it would take before any side effects would surface?

    Trial Drug
    My doc tells me some don't get any side effects, but most will get something between a week to 2 weeks. Are you checking your BP ? 2 days, I doubt you will feel anything..
  • cww71964
    cww71964 Member Posts: 97
    livealive said:

    Trial Drug
    My doc tells me some don't get any side effects, but most will get something between a week to 2 weeks. Are you checking your BP ? 2 days, I doubt you will feel anything..

    trial drug
    Hi Raj,
    Have you decided to go into a trial?
  • cww71964 said:

    trial
    My clinical oncologist wanted lab work and a ct scan of the chest before I can enter the trial. I had the lab work done last Friday. I was scheduled for the ct scan today but my insurance did not preauthorize it. They are supposed to speak with the oncologist tomorrow to find out the details of the trial before they will approve it. Hopefully I will know something by this week. Very frustrating to say the least.

    Thanks for your discussions.
    Thanks for your discussions. Useful for me.
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