Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - An

24

Comments

  • cww71964
    cww71964 Member Posts: 97
    #22
    One Lucky Girl said:

    Cala d'Hort, Ibiza (Spain)
    Hi Wayne,

    The photo was taken at Cala d'Hort, Ibiza. The island (rock) is called Es Vedrà, an uninhabited nature reserve. Legend has it that it's a mystical place with magnetic forces around it (i.e. compasses go haywire). Sunsets there are spectacular :-).

    Spain
    Hi Lucky Girl,

    Spain is on my bucket list, as is Italy and Greece. Got to start scratching them off and getting it done! The photo reminds me of the Big Sur coastline, a mystical place of it's own.

    Thanks,
    Wayne
  • LISAinTN
    LISAinTN Member Posts: 143
    #23
    cww71964 said:

    parks
    Lisa,
    There is nothing like being outdoors in beautiful areas.It is very spiritual for me and cleanses my soul. What part of TN are you in? I was born in Memphis, moved to California when I was 16, and now live in Nevada. I do miss the South at times.

    Thanks,
    Wayne

    Hi
    Hi Wayne,

    I live in East TN, about 30 minutes west of Knoxville. I've not been to Memphis yet. I was born and raised in Minnesota, but moved here 14 years ago. I love both places. MN is much flatter, but the further north you went, we had wonderful places to visit like Duluth, MN with Lake Superior and lots of other pretty scenery. Lots and lots of lakes. (Land of 10,000 lakes. Why they call it that, I don't know since there are closer to 12,000. lol) I don't miss the tornadoes and that type of weather that came with the flat land up there. Although, we had several different tornado warnings here last weekend and ended up with myself, my husband, a 50 lb. dog and 2 cats under the basement stairs. We lost 2 trees, but nothing like what other people suffered throughout the country last weekend.

    I've been to CA twice and to NV, once. (Las Vegas) It's fun to see different parts of the country.

    Blessings,
    Lisa
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    #24
    cww71964 said:

    Spain
    Hi Lucky Girl,

    Spain is on my bucket list, as is Italy and Greece. Got to start scratching them off and getting it done! The photo reminds me of the Big Sur coastline, a mystical place of it's own.

    Thanks,
    Wayne

    All worth seeing
    Hi Wayne,

    I think you'll love them all (don't forget Switzerland ;-). I have also visited Big Sur and have hiked in the Grand Canyon and think they are awe-inspiring. It's wonderful to live on a planet with so many beautiful places -- I want to see as many as I can. Love your pic too.
  • livealive
    livealive Member Posts: 127
    #25
    adobe said:

    keep searching for your answers and decisions- stay with CSN
    We all have questions seeking answers. Here we can share our questions, answers, and experiences of all aspects of treatment, and it will help you daily. Modern medicine and our doctors are also working on our team - we are all playing to win - keep in touch with CSN - it is always just a mouseclick away!

    2 weeks, need to decide
    So I have some updates.

    I did the CT scan, next they need me to do an EKG, after which they may clear me for the double blind trial for Pazopanib. However, I have the options of going on the drug directly, as well being monitored as well as I would on the trial, without going into the blind trial. Many schools of thought, however, why blindfold myself and go on a trial ? If I can with open eyes, either take the drug (same as on trial), or monitor (as if on placebo)?

    I also have to do some blood tests etc. Maybe soon.

    Looking for guidance, prayers, wishes, will take anything that helps.

    Thanks.
  • garym
    garym Member Posts: 1,647
    #26
    livealive said:

    2 weeks, need to decide
    So I have some updates.

    I did the CT scan, next they need me to do an EKG, after which they may clear me for the double blind trial for Pazopanib. However, I have the options of going on the drug directly, as well being monitored as well as I would on the trial, without going into the blind trial. Many schools of thought, however, why blindfold myself and go on a trial ? If I can with open eyes, either take the drug (same as on trial), or monitor (as if on placebo)?

    I also have to do some blood tests etc. Maybe soon.

    Looking for guidance, prayers, wishes, will take anything that helps.

    Thanks.

    2 weeks, need to decide
    Raj,

    With all else being equal, knowing that you are actually taking the Pazopanib as opposed to being in the trial and adding more anxiety wondering if you are getting the placebo, sounds like an easy decision to make. Unless there are some cons, like cost & who is footing the bill etc., I'd take the drug. That way at least you will be in control.

    Good luck,

    Gary
  • livealive
    livealive Member Posts: 127
    #27
    garym said:

    2 weeks, need to decide
    Raj,

    With all else being equal, knowing that you are actually taking the Pazopanib as opposed to being in the trial and adding more anxiety wondering if you are getting the placebo, sounds like an easy decision to make. Unless there are some cons, like cost & who is footing the bill etc., I'd take the drug. That way at least you will be in control.

    Good luck,

    Gary

    Gary's questions
    The doctor brought these questions up - maybe GaryM and he chatted.

    - Insurance may, or may not cover, they definitely need a pre-authorization. If they tell me for sure, I can sell the condo, but, no one is telling me for sure.
    - It might actually prevent / delay recurrence - no one knows, hence the trial (pro)
    - 5 out of 6 doctor's will not prescribe the drug outside trial, since it's not approved for stage 3, and yet, they are willing to subject me to it under the label of trial.
    - One of the most prominent doctor's on RCC tells me the cells can survive by osmosis, but Pazopanib prevents the growth of new blood vessels and keeps tumors from forming. Not sure if it kills cells that have not yet formed a tumor. So what about after the medication is done ?
    - She also tells me why subject your immune system to this drug, and my immune system might be able to kill if there are residual cells that might have entered through the vein invasion.
    - She is willing to monitor me
    - She said she won't push the trial on me, it's not necessarily the silver bullet.
    - Resistance, I might be using up one of the "bullets", when it's not needed.
    - Quality of Life - Side-Effetcs
    - The Altruistic aspect, I have told them, I can't give what I don't have, I have to try and save myself before I save others.

    About the benefit of extra monitoring from the trial, I got that covered, some of the best doctors are willing to monitor me very aggressively.

    If I don't do the drug,

    - and there is recurrence, then, it would be like, "Had I taken that drug..."..
    - no one knows - if the drug works, I might be taking away the most aggressive way of treating this..
    - I feel OK, right now, but I also felt OK, when I had the tumor in me, so, it's what we don't see...

    If I do the drug -> back to the cons..and pro's

    The question remains on the drug. I am the one who has to decide, and am aware of how frustrating this can be for others.

    The one thing, the anger has diminished. I am thankful to everyone for their candor, specially, Fox, Tex, Lisa, and Gary.

    The question still remains. Drug ? Trial ? Monitor ?

    Gratefully,

    R.
  • garym
    garym Member Posts: 1,647
    #28
    livealive said:

    Gary's questions
    The doctor brought these questions up - maybe GaryM and he chatted.

    - Insurance may, or may not cover, they definitely need a pre-authorization. If they tell me for sure, I can sell the condo, but, no one is telling me for sure.
    - It might actually prevent / delay recurrence - no one knows, hence the trial (pro)
    - 5 out of 6 doctor's will not prescribe the drug outside trial, since it's not approved for stage 3, and yet, they are willing to subject me to it under the label of trial.
    - One of the most prominent doctor's on RCC tells me the cells can survive by osmosis, but Pazopanib prevents the growth of new blood vessels and keeps tumors from forming. Not sure if it kills cells that have not yet formed a tumor. So what about after the medication is done ?
    - She also tells me why subject your immune system to this drug, and my immune system might be able to kill if there are residual cells that might have entered through the vein invasion.
    - She is willing to monitor me
    - She said she won't push the trial on me, it's not necessarily the silver bullet.
    - Resistance, I might be using up one of the "bullets", when it's not needed.
    - Quality of Life - Side-Effetcs
    - The Altruistic aspect, I have told them, I can't give what I don't have, I have to try and save myself before I save others.

    About the benefit of extra monitoring from the trial, I got that covered, some of the best doctors are willing to monitor me very aggressively.

    If I don't do the drug,

    - and there is recurrence, then, it would be like, "Had I taken that drug..."..
    - no one knows - if the drug works, I might be taking away the most aggressive way of treating this..
    - I feel OK, right now, but I also felt OK, when I had the tumor in me, so, it's what we don't see...

    If I do the drug -> back to the cons..and pro's

    The question remains on the drug. I am the one who has to decide, and am aware of how frustrating this can be for others.

    The one thing, the anger has diminished. I am thankful to everyone for their candor, specially, Fox, Tex, Lisa, and Gary.

    The question still remains. Drug ? Trial ? Monitor ?

    Gratefully,

    R.

    MAARS...
    Raj,

    Have you considered trying Gerald White's MAARS program? I don't "yet" have first hand knowledge/experience with it (perhaps Tex or Jon will offer more), but it would seem to be a very good option for you.

    As I understand it, it involves meditation and the power of the mind to bolster your immune system and help identify and kill cancer cells. Long story short, Mr. White had a 20lb (yes 20lb) RCC tumor and kidney removed about 20 years ago and was eventually given 3 months to live. He did not accept this and went about developing the MAARS program which he credits with saving his life. He remains alive and well today and is dedicated to helping others beat cancer, the program cost (book & CD) is under $50 I believe, and of course there are no side effects. Just Google Gerald White MAARS for complete information.

    You could take advantage of being closely monitored as mentioned in your post, actively go on the attack using that impressive brain of yours, protect and improve your own immune defenses, and save the drugs for IF IF IF it comes back. Maybe by then we will have that magic silver bullet, I'll defer to foxhd on that.

    Just a thought,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #29
    garym said:

    MAARS...
    Raj,

    Have you considered trying Gerald White's MAARS program? I don't "yet" have first hand knowledge/experience with it (perhaps Tex or Jon will offer more), but it would seem to be a very good option for you.

    As I understand it, it involves meditation and the power of the mind to bolster your immune system and help identify and kill cancer cells. Long story short, Mr. White had a 20lb (yes 20lb) RCC tumor and kidney removed about 20 years ago and was eventually given 3 months to live. He did not accept this and went about developing the MAARS program which he credits with saving his life. He remains alive and well today and is dedicated to helping others beat cancer, the program cost (book & CD) is under $50 I believe, and of course there are no side effects. Just Google Gerald White MAARS for complete information.

    You could take advantage of being closely monitored as mentioned in your post, actively go on the attack using that impressive brain of yours, protect and improve your own immune defenses, and save the drugs for IF IF IF it comes back. Maybe by then we will have that magic silver bullet, I'll defer to foxhd on that.

    Just a thought,

    Gary

    MAARS
    Spot on Gary! I was about to ask Raj if he's spoken with Wayne about MAARS or ask Wayne if he's dipped into the programme himself.

    I've told Jerry that I thought Raj a perfect candidate for MAARS and he has said he would like to do anything he can to help him.

    So, Raj, if you would like to invite extra help from the grand old man in this arena please either phone me or post here and let me know and I'll put you in touch with Jerry. He's a highly accomplished engineer, plasma physicist and inventor so you would be on the same wavelength intellectually.

    Otherwise, Gary has anticipated the analysis I was intending to make. Is there a closing date for the pazopanib trial? Even if there is, my guess is that it would be a soft date and they would welcome you in later should you elect to offer yourself as a subject. It seems a good option to defer the decision, get your stent out, keep getting fitter and build your immune strength as much as possible, all the while being closely monitored so as to be able to leap into action IF/when the need should arise.

    Let me know about Jerry - I'll be available this afternoon and evening from about 7:30 GMT and probably on these threads off and on meantime.
  • livealive
    livealive Member Posts: 127
    #30
    Texas_wedge said:

    MAARS
    Spot on Gary! I was about to ask Raj if he's spoken with Wayne about MAARS or ask Wayne if he's dipped into the programme himself.

    I've told Jerry that I thought Raj a perfect candidate for MAARS and he has said he would like to do anything he can to help him.

    So, Raj, if you would like to invite extra help from the grand old man in this arena please either phone me or post here and let me know and I'll put you in touch with Jerry. He's a highly accomplished engineer, plasma physicist and inventor so you would be on the same wavelength intellectually.

    Otherwise, Gary has anticipated the analysis I was intending to make. Is there a closing date for the pazopanib trial? Even if there is, my guess is that it would be a soft date and they would welcome you in later should you elect to offer yourself as a subject. It seems a good option to defer the decision, get your stent out, keep getting fitter and build your immune strength as much as possible, all the while being closely monitored so as to be able to leap into action IF/when the need should arise.

    Let me know about Jerry - I'll be available this afternoon and evening from about 7:30 GMT and probably on these threads off and on meantime.

    Today's update
    So I met my surgeon, I trust him, and like him, enough to put my life in his hands.
    First thing, as I enter the room, I heard
    "I don't mean to be judgmental, but we, the doctors, nurses simply don't have enough time to keep going back and forth with your over email. Just give it up (i.e. control".
    And in all fairness, I have keep a sustained dialogue going with the nurse, but she had told me, email me if you have questions.
    I thanked him for his candor, and that I prefer being talked to directly.
    He explained my pathology report.
    In all this I forgot to tell him about my groin pain, he had walked out of the room and led us out. All sorts of thoughts keep going through the mind, some of you can appreciate. More worry. Maybe that's destiny now, i.e. comes with the territory ?
    No decision yet on the trial. It was an experience - so if you'll think the best institutes in NYC are better, well, depends, on what you are looking at / for.
    Long day. It's still surreal sometimes.

    Gary, I talked with Texas, I am sincerely obliged by both of you. Thank you.

    Raj.
  • LISAinTN
    LISAinTN Member Posts: 143
    #31
    livealive said:

    Today's update
    So I met my surgeon, I trust him, and like him, enough to put my life in his hands.
    First thing, as I enter the room, I heard
    "I don't mean to be judgmental, but we, the doctors, nurses simply don't have enough time to keep going back and forth with your over email. Just give it up (i.e. control".
    And in all fairness, I have keep a sustained dialogue going with the nurse, but she had told me, email me if you have questions.
    I thanked him for his candor, and that I prefer being talked to directly.
    He explained my pathology report.
    In all this I forgot to tell him about my groin pain, he had walked out of the room and led us out. All sorts of thoughts keep going through the mind, some of you can appreciate. More worry. Maybe that's destiny now, i.e. comes with the territory ?
    No decision yet on the trial. It was an experience - so if you'll think the best institutes in NYC are better, well, depends, on what you are looking at / for.
    Long day. It's still surreal sometimes.

    Gary, I talked with Texas, I am sincerely obliged by both of you. Thank you.

    Raj.

    Hi
    Hi Raj,

    Just catching up on the posts I missed. Sounds like you have a few decisions to make. The guys are giving you great advice. As for me, I'll be continuing to keep you in my prayers.

    Blessings,
    Lisa
  • livealive
    livealive Member Posts: 127
    #32
    LISAinTN said:

    Hi
    Hi Raj,

    Just catching up on the posts I missed. Sounds like you have a few decisions to make. The guys are giving you great advice. As for me, I'll be continuing to keep you in my prayers.

    Blessings,
    Lisa

    Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial -
    Thank you Lisa. I need and will gratefully accept all prayers I am offered.
  • livealive
    livealive Member Posts: 127
    #33
    livealive said:

    Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial -
    Thank you Lisa. I need and will gratefully accept all prayers I am offered.

    Update - Also Posted elsewhere
    I have had debated the efficacy of the way trials are conducted, and Wayne, I think has decided on a trial. I myself had vascular invasion, still considering a trial, but there are varying aspects of this. Gerald White (the others can point you to him or find hin by a search) has stated his views on how trials are conducted.

    Here are some questions and answers I had with a surgeon - I think he made sense, along with Dr Dutcher here in NYC. I am also told "In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm." - i.e. the situation I find myself in is very rare, and yet, I must deal with it.

    (Q1) What is appropriate level of monitoring ? Does it help to monitor and detect earlier ?
    (A1) There is no general accepted surveillence and many people have their own ideas. I will leave this up to you and your physician of choice. I would be a little more aggressive because of your age and health (more imaging).

    (Q2) By monitoring alone, have I not already missed the bus - should they detect something ?
    (A2) In theory, yes, but that is only assuming that we have an effective treatment to kill any residual cancer cells. And we do not have any treatment that has shown a benefit in patients without measureable metastatic disease.

    (Q3) I went to a hospital, they presented a double blind clinical trial for Pazopanib or Placebo.
    (A3) A clinical trial is a good idea as long as you accept that there is no evidence showing benefit in your case.

    (Q4) I could go to another country and get on the drug v/s go on a blind trial, and have them monitor me. Any argument against this ?
    (A4) I wouldnt do this personally. It is not as if there is any known agent which can help you but is unavailable. I'm sorry I cannot give you specific answers. Honestly, I would be worried if anyone tries to do this since the studies have not been performed that would allow definitive answers for you.

    I am also told that going on the drugs in trial (i.e. Evorolimus, Pazopanib) is not the silver bullet, we expect them to be. There have been several trials since 2005 which they haven't published results - for a reason ?

    So why deal with the side-effects ? Why weaken your immune system further ? They tell me altruistic purposes, help man-kind, well, fine, forgive me for saying this, I can only help others if I am around, so first tell me how I can live ? No one can answer this one. So, the emotional altruistic nonsense doesn't fly with me for now.

    At a deeply cynical level, I feel, these trials can be rigged, with people with better prognostic indicators receiving the drug and thus skew the results. My faith in the medical community, from what I have seen, is well, doesn't exist (I was going to say shaken).

    The debate continues...I think going on the drug outside trial, I don't want to do. So question remains, and answers are welcome, if I haven't already frustrated the others by now...do I do the trial ? Thinking...still thinking..

    Wayne, thank you for your replies. I find hope in what you emailed me.

    Tex - likewise.

    Gary, thanks.

    Raj.
  • livealive
    livealive Member Posts: 127
    #34
    livealive said:

    Update - Also Posted elsewhere
    I have had debated the efficacy of the way trials are conducted, and Wayne, I think has decided on a trial. I myself had vascular invasion, still considering a trial, but there are varying aspects of this. Gerald White (the others can point you to him or find hin by a search) has stated his views on how trials are conducted.

    Here are some questions and answers I had with a surgeon - I think he made sense, along with Dr Dutcher here in NYC. I am also told "In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm." - i.e. the situation I find myself in is very rare, and yet, I must deal with it.

    (Q1) What is appropriate level of monitoring ? Does it help to monitor and detect earlier ?
    (A1) There is no general accepted surveillence and many people have their own ideas. I will leave this up to you and your physician of choice. I would be a little more aggressive because of your age and health (more imaging).

    (Q2) By monitoring alone, have I not already missed the bus - should they detect something ?
    (A2) In theory, yes, but that is only assuming that we have an effective treatment to kill any residual cancer cells. And we do not have any treatment that has shown a benefit in patients without measureable metastatic disease.

    (Q3) I went to a hospital, they presented a double blind clinical trial for Pazopanib or Placebo.
    (A3) A clinical trial is a good idea as long as you accept that there is no evidence showing benefit in your case.

    (Q4) I could go to another country and get on the drug v/s go on a blind trial, and have them monitor me. Any argument against this ?
    (A4) I wouldnt do this personally. It is not as if there is any known agent which can help you but is unavailable. I'm sorry I cannot give you specific answers. Honestly, I would be worried if anyone tries to do this since the studies have not been performed that would allow definitive answers for you.

    I am also told that going on the drugs in trial (i.e. Evorolimus, Pazopanib) is not the silver bullet, we expect them to be. There have been several trials since 2005 which they haven't published results - for a reason ?

    So why deal with the side-effects ? Why weaken your immune system further ? They tell me altruistic purposes, help man-kind, well, fine, forgive me for saying this, I can only help others if I am around, so first tell me how I can live ? No one can answer this one. So, the emotional altruistic nonsense doesn't fly with me for now.

    At a deeply cynical level, I feel, these trials can be rigged, with people with better prognostic indicators receiving the drug and thus skew the results. My faith in the medical community, from what I have seen, is well, doesn't exist (I was going to say shaken).

    The debate continues...I think going on the drug outside trial, I don't want to do. So question remains, and answers are welcome, if I haven't already frustrated the others by now...do I do the trial ? Thinking...still thinking..

    Wayne, thank you for your replies. I find hope in what you emailed me.

    Tex - likewise.

    Gary, thanks.

    Raj.

    Decision day
    Still scratching my head - what the heck hit me ?
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #35
    livealive said:

    Decision day
    Still scratching my head - what the heck hit me ?

    Decision day
    Raj, can you re-cap your analysis?
    What do you see as the worst-case scenarios if you don't/do enter the trial?
    Other than worst case, what other downsides to not entering it?
    Is this decision really a unique occasion - a one-off life and death commitment (I seriously doubt it). Have you been put under much pressure by a statement that this is your one and only chance?
    How likely do you see it that if you don't go for it it will prove to have been an irremediable and fatal decision?
    Fundamentally, I'm asking how palatable is plan B - if you decide not to enter the trial what are the ways you will deal with the various possible courses your life might take. I think reviewing the possible future choices might help take some of the sting out of the feeling that today's decision is SO critical.
  • ejones_pa
    ejones_pa Member Posts: 8
    #36
    Texas_wedge said:

    Decision day
    Raj, can you re-cap your analysis?
    What do you see as the worst-case scenarios if you don't/do enter the trial?
    Other than worst case, what other downsides to not entering it?
    Is this decision really a unique occasion - a one-off life and death commitment (I seriously doubt it). Have you been put under much pressure by a statement that this is your one and only chance?
    How likely do you see it that if you don't go for it it will prove to have been an irremediable and fatal decision?
    Fundamentally, I'm asking how palatable is plan B - if you decide not to enter the trial what are the ways you will deal with the various possible courses your life might take. I think reviewing the possible future choices might help take some of the sting out of the feeling that today's decision is SO critical.

    Tough decisions to make
    Female 51, 11cm tumor, open radical nehprectomy right kidney 2/24, pathology reports no nodes involved, microscopic cells found in renal vein, Stage 3 Clear cell.

    1st local Oncologist, 3 options, 1)do nothing monitor every 6 months (walk on eggshells), 2) enter the Everest trial (the only one he offered), 3)take Chemo outside of a trial that insurance may or may not cover, may do something or do nothing. How do I fight something that may or not be there?

    2nd oncologist U of Penn, offered 2 options. 1)monitor with scans every few months or 2) enter the Pazopanid or the Everest trial, he felt the Pazopanid to be the better option for me. Will be monitored every 3 to 4 weeks, using the local facility and see him after the tests for follow up.

    I am feeling the second Dr and the Pazopanid is the right choice for me and the best decision I can make at this time. I am so afraid if I do nothing and something shows up I will feel regret. I seem to find solice in the fact that if I am in a trial and something does show up I will be aware of it sooner and get it treated quicker. This has to be the hardest thing I have ever had to deal with in my life.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #37
    ejones_pa said:

    Tough decisions to make
    Female 51, 11cm tumor, open radical nehprectomy right kidney 2/24, pathology reports no nodes involved, microscopic cells found in renal vein, Stage 3 Clear cell.

    1st local Oncologist, 3 options, 1)do nothing monitor every 6 months (walk on eggshells), 2) enter the Everest trial (the only one he offered), 3)take Chemo outside of a trial that insurance may or may not cover, may do something or do nothing. How do I fight something that may or not be there?

    2nd oncologist U of Penn, offered 2 options. 1)monitor with scans every few months or 2) enter the Pazopanid or the Everest trial, he felt the Pazopanid to be the better option for me. Will be monitored every 3 to 4 weeks, using the local facility and see him after the tests for follow up.

    I am feeling the second Dr and the Pazopanid is the right choice for me and the best decision I can make at this time. I am so afraid if I do nothing and something shows up I will feel regret. I seem to find solice in the fact that if I am in a trial and something does show up I will be aware of it sooner and get it treated quicker. This has to be the hardest thing I have ever had to deal with in my life.

    Tough decisions to make
    Good luck. How felicitous for Raj that he can see someone else grappling with precisely the problem he is faced with! Your tumour is miles bigger than his but your situations are otherwise remarkably similar.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #38
    Texas_wedge said:

    Tough decisions to make
    Good luck. How felicitous for Raj that he can see someone else grappling with precisely the problem he is faced with! Your tumour is miles bigger than his but your situations are otherwise remarkably similar.

    choices
    Find out what facility is in the MDX-1106 trial in your area. Maybe, if you qualify, you may want to do this. My numbers may not be perfect but, as I understand it, over the last year or so, they haven't filled 80 spots for the trial. Considering 50,000 kidney cancer cases are diagnosed each year, and this MIGHT be the miracle drug, I suggest EVERYONE looks into it. For those that follow these threads regularly,let me say, I am feeling great! Next scan is in mid April. And I am pumped. I am lucky. And I know it........so far.
  • livealive
    livealive Member Posts: 127
    #39
    ejones_pa said:

    Tough decisions to make
    Female 51, 11cm tumor, open radical nehprectomy right kidney 2/24, pathology reports no nodes involved, microscopic cells found in renal vein, Stage 3 Clear cell.

    1st local Oncologist, 3 options, 1)do nothing monitor every 6 months (walk on eggshells), 2) enter the Everest trial (the only one he offered), 3)take Chemo outside of a trial that insurance may or may not cover, may do something or do nothing. How do I fight something that may or not be there?

    2nd oncologist U of Penn, offered 2 options. 1)monitor with scans every few months or 2) enter the Pazopanid or the Everest trial, he felt the Pazopanid to be the better option for me. Will be monitored every 3 to 4 weeks, using the local facility and see him after the tests for follow up.

    I am feeling the second Dr and the Pazopanid is the right choice for me and the best decision I can make at this time. I am so afraid if I do nothing and something shows up I will feel regret. I seem to find solice in the fact that if I am in a trial and something does show up I will be aware of it sooner and get it treated quicker. This has to be the hardest thing I have ever had to deal with in my life.

    Tough decision
    I cannot tell you what you should do, and I know you didn't ask.
    That said, be wary of the need to do "something", it feels like our eyes are closed, and something might pass us by, so we should first grab it, then open our eyes to see what we grabbed. Something might show up if you receive placebo, or even the drug, you run the risk of side effects, weakening your organs, risk of resistance, and cross-resistance. Risks are either way, and Tex tells me there are many better drugs coming out of the pipeline.
    Not an easy decision by any means, and no telling how this all will turn out. This cannot be solved analytically, or by thinking. Get some guidance, prayer etc. seems to help. Yet, no guarantees, but you will feel better.
  • livealive
    livealive Member Posts: 127
    #40
    foxhd said:

    choices
    Find out what facility is in the MDX-1106 trial in your area. Maybe, if you qualify, you may want to do this. My numbers may not be perfect but, as I understand it, over the last year or so, they haven't filled 80 spots for the trial. Considering 50,000 kidney cancer cases are diagnosed each year, and this MIGHT be the miracle drug, I suggest EVERYONE looks into it. For those that follow these threads regularly,let me say, I am feeling great! Next scan is in mid April. And I am pumped. I am lucky. And I know it........so far.

    MDX-1106 v/s Adjuvant Therapy - Q for For / Texas
    Fox, from what I see, A Phase 1b Study of MDX-1106 in Subjects With Advanced or Recurrent Malignancies, it is not available as adjuvant therapy.

    Texas- Yes, there may be trials later, but adjuvant has to be started within 84 days (some other trial may say XyZ days), but there will be a limit. I just want to ensure you knew this constraint when you made your suggestion.

    Thanks.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #41
    livealive said:

    MDX-1106 v/s Adjuvant Therapy - Q for For / Texas
    Fox, from what I see, A Phase 1b Study of MDX-1106 in Subjects With Advanced or Recurrent Malignancies, it is not available as adjuvant therapy.

    Texas- Yes, there may be trials later, but adjuvant has to be started within 84 days (some other trial may say XyZ days), but there will be a limit. I just want to ensure you knew this constraint when you made your suggestion.

    Thanks.

    12 week cut-off
    Was the rationale for this explained fully? If so, do you find the explanation persuasive? I wonder whether there is a reason which will stand in the future or whether it is an artefact of the present model and our current state of knowledge. Have you signed up for it now?

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