Is There Any More Room for “Some” Good News?

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Comments

  • janderson1964
    janderson1964 Member Posts: 2,215
    Sundanceh said:

    Thanks, Barb

    You just seem to be doing so great.....I'm so impressed with you:)

    You're beating the odds every day...I'm in awe:)

    Anything new to report. Are

    Anything new to report. Are you and your teams of docs starting to formulate a good plan of attack.I think about you and your situation every day.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

    Anything new to report. Are

    Anything new to report. Are you and your teams of docs starting to formulate a good plan of attack.I think about you and your situation every day.

    It's a Madhouse, Jeff....

    I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

    One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

    Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

    They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

    This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

    I said, why don't we determine where the cancer is present first? 

    My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

    Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

    However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

    I know this...but it was great to hear a medical man concur....he knows....

    The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

    We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

    He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

    But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

    Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

    I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

    I won't be an inspiration then.....

    Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

    And then I proceed to tell 'em:)

    Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

    If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

    I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

    If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

    CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

    Much more of course, Jeff.....just the highlights...

    So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

    So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

    All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

    I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

    It really does make you wonder where their true interests lay...

     

     

  • annalexandria
    annalexandria Member Posts: 2,571
    Sundanceh said:

    It's a Madhouse, Jeff....

    I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

    One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

    Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

    They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

    This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

    I said, why don't we determine where the cancer is present first? 

    My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

    Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

    However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

    I know this...but it was great to hear a medical man concur....he knows....

    The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

    We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

    He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

    But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

    Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

    I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

    I won't be an inspiration then.....

    Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

    And then I proceed to tell 'em:)

    Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

    If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

    I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

    If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

    CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

    Much more of course, Jeff.....just the highlights...

    So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

    So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

    All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

    I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

    It really does make you wonder where their true interests lay...

     

     

    I just read through this whole thread...

    i've really missed a lot being gone.  I'm so sorry things are so dang complicated for you, Craig.  Why can't cancer ever be simple?  I'm not happy to hear that your medical team isn't thinking outside of the box for you more.  You must be so frustrated that all your docs can jump on is more chemo.  It has its place, but I just can't believe that there aren't some other options that are worth trying.  Like you say, what have you got to lose?  Well...I'm comforted by the fact that you don't have bone involvement (gotta protect that excellent brain of yours), and I know that if anyone can push these doctors to get in in gear, and come up with a better tx plan, it's the Lion.

    Lots o' love coming your way, bud~AA

  • janderson1964
    janderson1964 Member Posts: 2,215
    Sundanceh said:

    It's a Madhouse, Jeff....

    I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

    One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

    Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

    They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

    This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

    I said, why don't we determine where the cancer is present first? 

    My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

    Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

    However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

    I know this...but it was great to hear a medical man concur....he knows....

    The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

    We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

    He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

    But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

    Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

    I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

    I won't be an inspiration then.....

    Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

    And then I proceed to tell 'em:)

    Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

    If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

    I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

    If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

    CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

    Much more of course, Jeff.....just the highlights...

    So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

    So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

    All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

    I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

    It really does make you wonder where their true interests lay...

     

     

    Wow Craig. What an ordeal but

    Wow Craig. What an ordeal but I love your resolve and fight. You are still an inspiration to me. I am glad that the lion is on the prowl. I know that you have always stood by your team at your NCI hospital. I switched all of my care to an NCI hospital 2 years ago mainly since that is where I always had surgery and my local oncologist pissed me off. I thought the care and communication would be much better. Man was I wrong. The experience has been very dissapointing to say the least.

    Keep fighting brother and nothing wrong with being the aggressor.

  • LivinginNH
    LivinginNH Member Posts: 1,456
    Sundanceh said:

    It's a Madhouse, Jeff....

    I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

    One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

    Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

    They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

    This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

    I said, why don't we determine where the cancer is present first? 

    My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

    Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

    However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

    I know this...but it was great to hear a medical man concur....he knows....

    The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

    We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

    He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

    But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

    Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

    I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

    I won't be an inspiration then.....

    Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

    And then I proceed to tell 'em:)

    Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

    If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

    I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

    If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

    CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

    Much more of course, Jeff.....just the highlights...

    So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

    So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

    All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

    I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

    It really does make you wonder where their true interests lay...

     

     

     
    My dear Craig,
    Oh how I can

     

    My dear Craig,

    Oh how I can feel your frustration and disappointment with your doctors.  That's exactly how Rick and I felt most of the time.  I learned early on that unless the surgeon was about to cut into him and get a paycheck, they didn't have much use for Rick as a human being. They'd be all smiles and oh so possitive during the consult, but if something popped up afterwards, they'd just push us off to the oncologist "the chemo doc".  So after having gone through this entire process as a watchful caregiver, it often appeared to me that there isn't much skill required to be an oncologist, since all they do is hand out the chemo flavor of the day.  So when Rick finished Folfox and it didn't work, they simply switched him to Folfuri w/Avastin and after that failed, his oncologist just came in and said, "I'm sorry, there's nothing left I can do for you, take care.".  And that was that.  As you know, Rick fought hard to the end, but it came a time that he just didn't to say "uncle".  He never did come out and say it exactly, but I told him that his body just couldn't take it anymore.  Doctor's just don't have all the answers and cancer mystifies them just as much as it does us.  So my friend, that's now where you're at, the crossroads.

    Love always,

    Cynthia

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member

     
    My dear Craig,
    Oh how I can

     

    My dear Craig,

    Oh how I can feel your frustration and disappointment with your doctors.  That's exactly how Rick and I felt most of the time.  I learned early on that unless the surgeon was about to cut into him and get a paycheck, they didn't have much use for Rick as a human being. They'd be all smiles and oh so possitive during the consult, but if something popped up afterwards, they'd just push us off to the oncologist "the chemo doc".  So after having gone through this entire process as a watchful caregiver, it often appeared to me that there isn't much skill required to be an oncologist, since all they do is hand out the chemo flavor of the day.  So when Rick finished Folfox and it didn't work, they simply switched him to Folfuri w/Avastin and after that failed, his oncologist just came in and said, "I'm sorry, there's nothing left I can do for you, take care.".  And that was that.  As you know, Rick fought hard to the end, but it came a time that he just didn't to say "uncle".  He never did come out and say it exactly, but I told him that his body just couldn't take it anymore.  Doctor's just don't have all the answers and cancer mystifies them just as much as it does us.  So my friend, that's now where you're at, the crossroads.

    Love always,

    Cynthia

    Thanks!

    I'll be interested to see what my Radiation Onc has to say.....if we can biop the liver and the lungs....I am scheduled for those procedures now.

    I'll also be interested in the report from the MRI I did late yesterday afternoon....

    This guy wants to use my old cyberknife records.....the plan, the delivery, and the results....to see which areas were affected.....and how closely do they correlate with this new area of activity. 

    Both the liver and lung involvement are very near my old stomping grounds from fights before.....after we radiate one area....we cannot radiate the same area.  So, the question will be trying to determine if there is any area in their to work - without stepping on something already done in the past. 

    I'll probably die in the liver this time......I don't have the options that the vast majority of patients have.....you guys have a healthy enough cancerous liver to RESECT. 

    I don't...

    Mine is full of NASH and will probably never be resectable...and that's what will get me. One of the other doctors on the team did tell me that Cancer was going to catch me at some point. 

    I don't want a prolonged fight in the liver....I can't win there.....not with just chemo....shrinking a little here....growing some more there. 

    If chemo is my only weapon....it's already all over but the cryin'......again I'm a 9-year guy.....not a first timer, where options are a-plenty. 

    I want to know about lungs too....hoping for some radiation there, surgery looks out there too right now.

    Well, I've got more work to do and more facts to gather....

    It's all really convoluted to even post....this is the best I can come up with.  Still in pain alot but knocking the edge off or else I couldn't even be writing.

    Gotta be cancer in the lung making me hurt this bad.....scar tissue and such rubbing on nerves hurts, but from the start this feels differently.

    The only bright spot out of the thing is that the rad onc is going to try and come up with a plan besides just chemo.....he sees something and says I'm valid enough and tough enough as a patient for him to try.....and not just resign himself to chemo.

    I could clearly see that assessment had him pissed off.....but he coulnd't harangue his colleagues.....but I know him...and I read him...loud and clear. 

    He's the only one of four doctors, who is willing to step out of his comfort zone.....even if he does end up hurting or killing me. My liver is still functional....but he feels a pop or two and it could begin going the other way.  The liver is a very tenuous situation for me.

    What else is there to say......

    If there is any info worthy of posting later, I'll look at that. 

    Thanks again!

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Sundanceh said:

    Thanks!

    I'll be interested to see what my Radiation Onc has to say.....if we can biop the liver and the lungs....I am scheduled for those procedures now.

    I'll also be interested in the report from the MRI I did late yesterday afternoon....

    This guy wants to use my old cyberknife records.....the plan, the delivery, and the results....to see which areas were affected.....and how closely do they correlate with this new area of activity. 

    Both the liver and lung involvement are very near my old stomping grounds from fights before.....after we radiate one area....we cannot radiate the same area.  So, the question will be trying to determine if there is any area in their to work - without stepping on something already done in the past. 

    I'll probably die in the liver this time......I don't have the options that the vast majority of patients have.....you guys have a healthy enough cancerous liver to RESECT. 

    I don't...

    Mine is full of NASH and will probably never be resectable...and that's what will get me. One of the other doctors on the team did tell me that Cancer was going to catch me at some point. 

    I don't want a prolonged fight in the liver....I can't win there.....not with just chemo....shrinking a little here....growing some more there. 

    If chemo is my only weapon....it's already all over but the cryin'......again I'm a 9-year guy.....not a first timer, where options are a-plenty. 

    I want to know about lungs too....hoping for some radiation there, surgery looks out there too right now.

    Well, I've got more work to do and more facts to gather....

    It's all really convoluted to even post....this is the best I can come up with.  Still in pain alot but knocking the edge off or else I couldn't even be writing.

    Gotta be cancer in the lung making me hurt this bad.....scar tissue and such rubbing on nerves hurts, but from the start this feels differently.

    The only bright spot out of the thing is that the rad onc is going to try and come up with a plan besides just chemo.....he sees something and says I'm valid enough and tough enough as a patient for him to try.....and not just resign himself to chemo.

    I could clearly see that assessment had him pissed off.....but he coulnd't harangue his colleagues.....but I know him...and I read him...loud and clear. 

    He's the only one of four doctors, who is willing to step out of his comfort zone.....even if he does end up hurting or killing me. My liver is still functional....but he feels a pop or two and it could begin going the other way.  The liver is a very tenuous situation for me.

    What else is there to say......

    If there is any info worthy of posting later, I'll look at that. 

    Thanks again!

     

     

    I don't have any words... I
    I don't have any words... I continue to pray for you and think positive thoughts.
  • wolfen
    wolfen Member Posts: 1,324
    jen2012 said:

    I don't have any words... I
    I don't have any words... I continue to pray for you and think positive thoughts.

    From "Dream Team" To "Nightmare Team"

    That's how I see that you are being treated. They are "scared" of your case??? What a disgusting thing to say to you! Can you tell I'm mad? Of course, you know my feelings on the majority of the medical profession.

    I'm glad there is a "lone wolf" among them who is still willing to try without being "scared". Don't let them just sweep you under the carpet. I know you won't. I can tell by your attitude.

    I know you've been with this bunch for a while, but if they're no longer fighting with you and for you, well..................

    Take care and we'll be waiting for an update.

    "SCARED, MY A$$". How do they think you feel?

    Luv,

    "Mama"

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    Gosh Craig -
    Sounds like a bunch of stuff to still find out before they throw just chemo at you. I know how these docs are, I've worked with all kinds of them. We all really have to be our own advocate. These docs have so many patients that we have to keep track of ourselves. Its sad but true. The medical profession gets immune to the patient and it's just a number. Good luck on your journey and sounds like you definitely will keep the docs in line with your care.
    Sandy
  • Chelsea71
    Chelsea71 Member Posts: 1,169
    Sundanceh said:

    Thanks!

    I'll be interested to see what my Radiation Onc has to say.....if we can biop the liver and the lungs....I am scheduled for those procedures now.

    I'll also be interested in the report from the MRI I did late yesterday afternoon....

    This guy wants to use my old cyberknife records.....the plan, the delivery, and the results....to see which areas were affected.....and how closely do they correlate with this new area of activity. 

    Both the liver and lung involvement are very near my old stomping grounds from fights before.....after we radiate one area....we cannot radiate the same area.  So, the question will be trying to determine if there is any area in their to work - without stepping on something already done in the past. 

    I'll probably die in the liver this time......I don't have the options that the vast majority of patients have.....you guys have a healthy enough cancerous liver to RESECT. 

    I don't...

    Mine is full of NASH and will probably never be resectable...and that's what will get me. One of the other doctors on the team did tell me that Cancer was going to catch me at some point. 

    I don't want a prolonged fight in the liver....I can't win there.....not with just chemo....shrinking a little here....growing some more there. 

    If chemo is my only weapon....it's already all over but the cryin'......again I'm a 9-year guy.....not a first timer, where options are a-plenty. 

    I want to know about lungs too....hoping for some radiation there, surgery looks out there too right now.

    Well, I've got more work to do and more facts to gather....

    It's all really convoluted to even post....this is the best I can come up with.  Still in pain alot but knocking the edge off or else I couldn't even be writing.

    Gotta be cancer in the lung making me hurt this bad.....scar tissue and such rubbing on nerves hurts, but from the start this feels differently.

    The only bright spot out of the thing is that the rad onc is going to try and come up with a plan besides just chemo.....he sees something and says I'm valid enough and tough enough as a patient for him to try.....and not just resign himself to chemo.

    I could clearly see that assessment had him pissed off.....but he coulnd't harangue his colleagues.....but I know him...and I read him...loud and clear. 

    He's the only one of four doctors, who is willing to step out of his comfort zone.....even if he does end up hurting or killing me. My liver is still functional....but he feels a pop or two and it could begin going the other way.  The liver is a very tenuous situation for me.

    What else is there to say......

    If there is any info worthy of posting later, I'll look at that. 

    Thanks again!

     

     

    Thanks for the update.  Your

    Thanks for the update.  Your situation sounds quite similar to Steve's.  His lungs are not yet causing symptoms but his liver mets are making themselves known.  I think it could all go really south, really fast.  I am still in shock over how quickly it can all turn so bad.  Steve had a really impressive team of surgeons who were very interested in doing surgery.  As soon as they discovered lung mets (multiple locations) they said see you later.  Referred him to a new onc.  You will never guess what this guy recommended.  Chemo.  Surprise surprise.  He has had only two sessions but I suspect, based on his symptoms, that it is not working.  I hope you are able to work out something better for yourself.  Steve has very smart cancer cells.  They've caught on to the chemo.  

     

    I think about you every day.  I feel very hopeful about your situation.  Stay strong, don't give up.

     

    Chels

  • LindaK.
    LindaK. Member Posts: 506 Member
    Sundanceh said:

    It's a Madhouse, Jeff....

    I had to do another MRI yesterday.....and I just found out that hey have two biopsies scheduled next week. 

    One of the doctors on The Dream Team came out and told me...we're "Scared" of you and your case.

    Translated, that means that none of them want to take the responsibility for my care 'in case' something goes bad with me. 

    They are all playing a great big old game of OLE'....my doctors are all playing the matador with me playing the role as the Lion instead of the bull......and as I charge after them on route to the next endless stop of appointments, they wave their red capes over me and yell......"Ole'....

    This is sad.....six week of tests, tests, and now more tests, on top of I don't know how many doctors's and appts that have been done and still being scheduled......and all they know to tell me now is Chemo....

    I said, why don't we determine where the cancer is present first? 

    My vaunted medical team has disappointed me to say the least.  I've touted all their names and talked the NCI institute up and the facility at large...and now we're 'scared.' 

    Let's face it...they are not scared for me....they are just scared for their reputations...I still believe in calling it like it is. 

    However, one lone doc on the team....my radiation onc told me that I had 'proved' enough to him with my last fight and said I was still worth more of a chance than just chemo....even told me it wouldn't work.  He told me that I was still worth fighting for and not to be simply relegated to the Chemo Dump....as the only source of the fight.

    I know this...but it was great to hear a medical man concur....he knows....

    The issue is complex though.....we're worried about events lapping one over another.....we have to be careful.....he can't just SBRT back into the liver willy nilly....he needs point of reference.....he goes back in over something already done and we could have trouble. 

    We've ordered my cyberknife charts with the test plan and results from the old hospital, so he can see if there is open room to be able to do anything. 

    He let me know that due to my condition and how close it is - that things could go bad for me and he knows that I am aware of all of this. 

    But, I told him, I'm a metastatic stage 4.....with multiple locations.....over a 9-year period.....and that I was DEAD anyway.....so what difference does it really matter what the risks are.....I've outlived most risks. 

    Main onc wants to rip my spleen out immediately and give me the Oxy again......I had let the rad onc know that wasn't going to happen....he had his guys make sure they wrote that down.....liability I guess. 

    I told them, I'm dead anyway....oxy is not going to work for the long term anyway...and then I'm pissed off with bad neuropathy and my 5th recurrence. 

    I won't be an inspiration then.....

    Everyone of 'em knows I mean business....I've hammered them and gone Lion on them as nicely and assertively as I could.  Each one of them approaches our consult.....and like a fellow colleague, they ask me for my assessment and where I see the plan going.

    And then I proceed to tell 'em:)

    Once again, Cancer has awakened the Sleeping Lion - and filled him with a terrible resolve.  

    If I wasn't sticking up for myself and letting them know that I understand what cancer is and how it operates, they would alreay have me jacked up.....and they can't even absolute confirm what is cancer and what isn't.

    I'm not just jumping into a fight until we can do better than that....this is serious stuff we swallow and not to be taken light-hearted.  Part of being a long time champ is the separation between me and the first timer.....the ability to know when to hold versus panic and react....and follow blindly. 

    If I'm going to die.....I'm going to die by my own hands.....not the doctor's. 

    CEA did rise from 9.2 to 51.5 in less than 5-weeks....so I figure the liver is active.....the lung hurts but maybe we can get a biop there....would have to go through two pleural cavities to reach....not going to be easy there.

    Much more of course, Jeff.....just the highlights...

    So more doctors - and more tests....and then this Dr. will determine his own fate with QOL as my guiding compass.

    So much going on with all the doctor stuff and trying to figure out how to shut your life down again - when to leave - all that there is to do. 

    All of this time and money wasted the past 6-weeks.....with no real definitive answers yet....all the doctors are fighting one another because of my case....and all are copping out to chemo as the way out for them.

    I've always stood up for the doctors.....but now, I'm not terribly enthralled by their acumen.  I used to think they cared about me enough to want to try.  Now, you hear a doctor just say chemo (right off the top) with no real evidence.

    It really does make you wonder where their true interests lay...

     

     

    :-(

    This news makes me so sad, I don't even know what to say.  It is all so foreign to me, I am one of the "follow blindly" first timers as a caregiver.

    I admire your knowledge and diligence, you know what is best for you deep down.  Keep giving those docs hell, don't let them be "scared" that's a cop out.

    Linda

  • janderson1964
    janderson1964 Member Posts: 2,215
    LindaK. said:

    :-(

    This news makes me so sad, I don't even know what to say.  It is all so foreign to me, I am one of the "follow blindly" first timers as a caregiver.

    I admire your knowledge and diligence, you know what is best for you deep down.  Keep giving those docs hell, don't let them be "scared" that's a cop out.

    Linda

    Your right Linda. If the docs

    Your right Linda. If the docs want to say they are scared they should step into our shoes to understand the defenition of the word scared.

  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Gosh Craig -
    Sounds like a bunch of stuff to still find out before they throw just chemo at you. I know how these docs are, I've worked with all kinds of them. We all really have to be our own advocate. These docs have so many patients that we have to keep track of ourselves. Its sad but true. The medical profession gets immune to the patient and it's just a number. Good luck on your journey and sounds like you definitely will keep the docs in line with your care.
    Sandy

    I find it particularily

    I find it particularily interesting they want to remove your spleen, even before they start chemo.    I have a friggen tumor on my spleen it was there when they removed my colon tumor and did my hysterectomy and no one touched my spleen.   I would have liked that one take out too,  WHY NOT!!!    They didn't take it out, they left it ..... for a while it did nothing, looked calcified, oncologist said he didn't know if it was cancer or not.....but it's been growing again.... wouldn't be doing that if it had been taken out the first surgery~~~~