no surgery

2

Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #22
    Oh no!  I'm so terribly sorry

    Oh no!  I'm so terribly sorry to read this.  You must be completely devastated.  I'm confident you will work out something.  Have I mentioned how much I freaking hate freaking cancer?

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #23
    Okay

    So it's going to be harder to find a new surgeon to do it, but not impossible.

    I had a lot of cuss words springing to mind when I saw this because I understand the deflating of hope you get when they turn you down, and I'd been turnd down a few times, and the last minute no's are like being punchd in the gut.  I hate that they do this, that it happens.

    I'm there with you In spirit, fighting alongside.

    Winter Marie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #24
    herdizziness said:

    Okay

    So it's going to be harder to find a new surgeon to do it, but not impossible.

    I had a lot of cuss words springing to mind when I saw this because I understand the deflating of hope you get when they turn you down, and I'd been turnd down a few times, and the last minute no's are like being punchd in the gut.  I hate that they do this, that it happens.

    I'm there with you In spirit, fighting alongside.

    Winter Marie

    Thanks Marie I have never

    Thanks Marie I have never been more devastated in my life and I have experienced some tragedies besides cancer. Especially to go from no to yes and back to NO after I had completed pre-op the day before surgery.

  • AnnLouise
    AnnLouise Member Posts: 276 Member
    #25
    Thinking of you and your recent disappointments

    I don't have any additional suggestions but just know I am sending prayers and positive thoughts to you and your wife.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #26
    Jeff,

    I'm just curious how they found 3 more lesions right before the surgery, they did not find before?

    Laz

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #27
    lp1964 said:

    Jeff,

    I'm just curious how they found 3 more lesions right before the surgery, they did not find before?

    Laz

    They did a last minute full

    They did a last minute full chest ct.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #28
    janderson1964 said:

    They did a last minute full

    They did a last minute full chest ct.

    I noticed that you're getting a lot of good tips

    over at the Colon Club...that's awesome!

    That clinical trial that Maia referenced is pretty much my cancer experience in a nutshell, although mine was more or less inadvertant.  I wish that was standard practice for all patients.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #29
    annalexandria said:

    I noticed that you're getting a lot of good tips

    over at the Colon Club...that's awesome!

    That clinical trial that Maia referenced is pretty much my cancer experience in a nutshell, although mine was more or less inadvertant.  I wish that was standard practice for all patients.

    Maia is amazing. Th trial

    Maia is amazing. Th trial seems perfect for me. I was denied for the exact reason that they are trying to prove wrong in the trial. I already sent the contact person an email in as sort of resume format and will follow up with a phone call today. I have also received some aggressive thoracic an liver surgeon names for both MDA and MSCC which I am in the process of contacting. I see my oncologist tomorrow. I emailed him this morning on what I am up to and asked for an extended office visit so I can hopefully get him on board with me and discuss starting treatment.

    This has become personal with me and a challange now. Ultimately it is about buying more time but I am also determined to prove my old fashioned close minded surgeon wrong.

    He didn't hesitate to operate 3 times when it was a single location but now changed his tune when it is not potentially curative surgery. I am still operable and by his own admission in great shape and can tolorate another big operation.

    I just don't understand these doctors playing God with our lives. It should be our decision.

  • Phil64
    Phil64 Member Posts: 838 Member
    #30
    janderson1964 said:

    Maia is amazing. Th trial

    Maia is amazing. Th trial seems perfect for me. I was denied for the exact reason that they are trying to prove wrong in the trial. I already sent the contact person an email in as sort of resume format and will follow up with a phone call today. I have also received some aggressive thoracic an liver surgeon names for both MDA and MSCC which I am in the process of contacting. I see my oncologist tomorrow. I emailed him this morning on what I am up to and asked for an extended office visit so I can hopefully get him on board with me and discuss starting treatment.

    This has become personal with me and a challange now. Ultimately it is about buying more time but I am also determined to prove my old fashioned close minded surgeon wrong.

    He didn't hesitate to operate 3 times when it was a single location but now changed his tune when it is not potentially curative surgery. I am still operable and by his own admission in great shape and can tolorate another big operation.

    I just don't understand these doctors playing God with our lives. It should be our decision.

    Thank you and Prayers for you...

    I'm praying for you Jeff. And I wanted to thank you for posting your updates.  I am sure that many will be challenged in similar ways and for sure you are forging a path/example for others to follow. I pray that you will find surgeons and doctors that will help explore every possible way to fight this disease!!!

    Light and Love to you today.

    Phil

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #31
    Phil64 said:

    Thank you and Prayers for you...

    I'm praying for you Jeff. And I wanted to thank you for posting your updates.  I am sure that many will be challenged in similar ways and for sure you are forging a path/example for others to follow. I pray that you will find surgeons and doctors that will help explore every possible way to fight this disease!!!

    Light and Love to you today.

    Phil

    Thank you Phil. Your prayers

    Thank you Phil. Your prayers are appreciated.

  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #32
    Jeff

    Jeff, 

    I was heartbroken to read of your recurrence.  I was praying that surgery would be an option and was so disappointed when I read that your surgery was cancelled.  I am glad that you are in control of finding other surgeons and I have a feeling you will find one who will perform the surgery.  One thing I have learned at MSKCC is that they don't ever give up.  I had a friend (who used to post online here) who had so many surgeries over 5 years, even with multiple locations.  The oncologist, radiologists and surgeons always kept finding another way to return her to NED.  I hope that the doctors there or at MDA give you the same opportunity.  If you need any assistance with MSKCC (ride from airport perhaps?  You could stay in NJ and I could get you into the city), please let me know.

     

    Best wishes, 

    Amy

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #33
    mom_2_3 said:

    Jeff

    Jeff, 

    I was heartbroken to read of your recurrence.  I was praying that surgery would be an option and was so disappointed when I read that your surgery was cancelled.  I am glad that you are in control of finding other surgeons and I have a feeling you will find one who will perform the surgery.  One thing I have learned at MSKCC is that they don't ever give up.  I had a friend (who used to post online here) who had so many surgeries over 5 years, even with multiple locations.  The oncologist, radiologists and surgeons always kept finding another way to return her to NED.  I hope that the doctors there or at MDA give you the same opportunity.  If you need any assistance with MSKCC (ride from airport perhaps?  You could stay in NJ and I could get you into the city), please let me know.

     

    Best wishes, 

    Amy

    What a generous offer Amy. I

    What a generous offer Amy. I live in va but grew up in nj so getting around up there isnt a problem for me. I am planning on contacting mskcc and johns hopkins tomorrow or seeing if my oncologist will. Either way they are on my list. I heard back from the surgical trial in co and they agreed to look at my scans so I have my foot in the door at one trial in co and mda so far.

     

  • maglets
    maglets Member Posts: 2,576 Member
    #34
    janderson1964 said:

    What a generous offer Amy. I

    What a generous offer Amy. I live in va but grew up in nj so getting around up there isnt a problem for me. I am planning on contacting mskcc and johns hopkins tomorrow or seeing if my oncologist will. Either way they are on my list. I heard back from the surgical trial in co and they agreed to look at my scans so I have my foot in the door at one trial in co and mda so far.

     

    oh jeff

    oh Jeff how very disappointing and upsetting and uneverythingelse.  I have not been here because I had the chance to come to florida for a wee break and have not been on line.  Jeff I can hardly tell you how close you are to my heart......I have always felt we were bound on the such a close path.....my heart aches for you ........I pray you can find some path through this mess....sending hugs dear friend........mags

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #35
    maglets said:

    oh jeff

    oh Jeff how very disappointing and upsetting and uneverythingelse.  I have not been here because I had the chance to come to florida for a wee break and have not been on line.  Jeff I can hardly tell you how close you are to my heart......I have always felt we were bound on the such a close path.....my heart aches for you ........I pray you can find some path through this mess....sending hugs dear friend........mags

    Thanks. Your hugs mean a lot

    Thanks. Your hugs mean a lot to me. I am a fighter or shall I say a warrior. I have so many avenues that I am exploring. It has become a personal challange. I start chemo next week in the meantime. My oncologist is on board with my thinking and everything that I do. I have some irons in the fire and am planning to add a lot more until I get the answers that i want.

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    #36
    Prayers and hugs

    Jeff

    Let me tag onto Phil's comment.  

    I too had a last minute PET scan within 48 hours of surgery to rule out odd matastasis that may have been missed in the CT process.  The PET, my first ever, was the lynch pin in the process.

    This actually worked in my favor since there were spots we have been watching for years that did not light on the PET.  

    Let me encourage you to continue your battle and never give up.

    For me the greatest regret would be to not fight till the last.  Much as the Spartans engaging the Persians.  The battle for the homeland taking precedence over personal safety and comfort.

    Sorry for the rant...

    Hugs of comfort, strength, and commitment to the fight.

    Art

  • Nana b
    Nana b Member Posts: 3,030 Member
    #37
    fatbob2010 said:

    Prayers and hugs

    Jeff

    Let me tag onto Phil's comment.  

    I too had a last minute PET scan within 48 hours of surgery to rule out odd matastasis that may have been missed in the CT process.  The PET, my first ever, was the lynch pin in the process.

    This actually worked in my favor since there were spots we have been watching for years that did not light on the PET.  

    Let me encourage you to continue your battle and never give up.

    For me the greatest regret would be to not fight till the last.  Much as the Spartans engaging the Persians.  The battle for the homeland taking precedence over personal safety and comfort.

    Sorry for the rant...

    Hugs of comfort, strength, and commitment to the fight.

    Art

    Sorry to hear this, my ONC

    Sorry to hear this, my ONC also told me no surgery to the 3 lung mets while I have a spot in my liver. But if the liver spot is gone he will do the lung surgery.    He told me that I was on chemo for the long haul and this was the first time he didn't look at me in the eye, ever.  Radiation of the lungs is also a possibility.  Hang in there

     

    CT Scan today, CEA should be in soon, it went up 7 last time after coming down hundreds at a time, hopefully i's a fluke

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #38
    Nana b said:

    Sorry to hear this, my ONC

    Sorry to hear this, my ONC also told me no surgery to the 3 lung mets while I have a spot in my liver. But if the liver spot is gone he will do the lung surgery.    He told me that I was on chemo for the long haul and this was the first time he didn't look at me in the eye, ever.  Radiation of the lungs is also a possibility.  Hang in there

     

    CT Scan today, CEA should be in soon, it went up 7 last time after coming down hundreds at a time, hopefully i's a fluke

    I hope the ct goes well for

    I hope the ct goes well for you. I am contacting more hospitals everyday. In fact I got an appointment to see Dr.Tomoaki Kato at Columbia University Hospital in Manhatten on April 4th and they just called and he is trying to move it up to next Thursday. Google his name if you get a chance. He has done some ground breaking radical first time surgeries and is well decorated for his work.

    I have now contacted 7 hospitals in total. The trial in colorado is looking at my scans today and should get back to me this week.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #39
    janderson1964 said:

    I hope the ct goes well for

    I hope the ct goes well for you. I am contacting more hospitals everyday. In fact I got an appointment to see Dr.Tomoaki Kato at Columbia University Hospital in Manhatten on April 4th and they just called and he is trying to move it up to next Thursday. Google his name if you get a chance. He has done some ground breaking radical first time surgeries and is well decorated for his work.

    I have now contacted 7 hospitals in total. The trial in colorado is looking at my scans today and should get back to me this week.

    I'm so impressed, Jeff!

    what a long way you have come in just a matter of days.  You're a fighter, no doubt about that.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #40
    janderson1964 said:

    I hope the ct goes well for

    I hope the ct goes well for you. I am contacting more hospitals everyday. In fact I got an appointment to see Dr.Tomoaki Kato at Columbia University Hospital in Manhatten on April 4th and they just called and he is trying to move it up to next Thursday. Google his name if you get a chance. He has done some ground breaking radical first time surgeries and is well decorated for his work.

    I have now contacted 7 hospitals in total. The trial in colorado is looking at my scans today and should get back to me this week.

    Jeff

    I have to chime in and say the same thing, WOW, respect to you and way to go getting what you need!  I am indeed impressed!! Very impressed!

    Keep on going forward!!

    Winter Marie

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #41
    herdizziness said:

    Jeff

    I have to chime in and say the same thing, WOW, respect to you and way to go getting what you need!  I am indeed impressed!! Very impressed!

    Keep on going forward!!

    Winter Marie

    I had a couple of set backs

    I had a couple of set backs last night after I posted. The clinical trial in Colorado and UC Sandiego both contacted me and said to go on systemic chemo to hopefully stablize the disease before they would operate. Samething my surgeon said. So it is not a no but three hospitals are saying chemo first. I start chemo next Wednesday. and I still have the appointment with Dr. Kato at Columbia U.

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