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tacyarts
tacyarts Member Posts: 73
edited October 2012 in Kidney Cancer #1
The scans that I had two weeks ago from my mdx 1106 / sutent trial finally received the % of shrinkage. The overall shrinkage of my tumors was 12 % over the first 6 weeks. It took over 2 weeks to get the results. Such a blessing!!
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  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #2
    Shrinkage
    Good stuff - keep it up.
  • alice124
    alice124 CSN Member Posts: 896 Member
    #3
    12% Reduction
    That's great news and, hopefully, only the first of many more reductions! I'm really happy for you. YES YES YES!!!
  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #4
    alice124 said:

    12% Reduction
    That's great news and, hopefully, only the first of many more reductions! I'm really happy for you. YES YES YES!!!

    12%
    Thats FANTASTIC! I've had bumps and bruises that are still present after 6 weeks! Keep going! Even stable is good news. 12% is awesome. I've been told sometimes it takes 2-3 infusions before changes.
  • Max Power
    Max Power Member Posts: 60
    #5
    You are the fortunate few!
    Great news, glad to hear it.

    I was on PD-1 (MDX-1106) (no Sutent) from May2011 to Jan 2012. No side effects. My notes say results are usually seen after 1st or 2nd scan. Side-effects, if at all, take 1-3mo. I had to leave the trial due to slight progression.

    But I was quite content to have 7 months of side-effect free stability!

    I'm on sutent now.
    May you keep shrinking!
    Max
  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #6
    Max Power said:

    You are the fortunate few!
    Great news, glad to hear it.

    I was on PD-1 (MDX-1106) (no Sutent) from May2011 to Jan 2012. No side effects. My notes say results are usually seen after 1st or 2nd scan. Side-effects, if at all, take 1-3mo. I had to leave the trial due to slight progression.

    But I was quite content to have 7 months of side-effect free stability!

    I'm on sutent now.
    May you keep shrinking!
    Max

    Switching
    Max, you seem to have a well-balanced attitude so I'm happy to ask you about the rationale for the exit from the trial.

    I'm not so cynical as to suppose that it's designed to manipulate the apparent success figures of the trial! I imagine that the exit criteria are ethically based on factors such as toleration (the cure being worse than the disease) or progression, suggesting that it hasn't worked/has stopped working and accordingly trying something else is now in the patient's best interests. Is this correct?

    Both of those criteria seem problematical and I presume medical science is, necessarily, feeling its way with these new therapies. Switching, however, seems a good idea on several grounds. First, it may wrong-foot the cancer in its endeavour to adadpt and survive (I'm using a teleological description here just as shorthand rather than with tacit assumptions).

    Next, a break from a given therapy may not be permanent - sometimes success is enjoyed on a re-visit to an earlier therapy, the patient having had a refractory period in which to recover from side-effects. Then, again, we may not yet know enough, for certain, about the latencies to benefits and to side-effects - the information you give above is probably the best guess so far but we are all so different and there may be delayed benefits for some patients that we don't yet know about and that may be camouflaged by the change of regimen.

    I'd be interested in your thoughts on the above (and the rationale of the decision) but, in any case, I take the opportunity to wish you every success on Sutent. Though not as new as the PD1, it's still pretty new and all indications are that it can be very effective.
  • Max Power
    Max Power Member Posts: 60
    #7
    Texas_wedge said:

    Switching
    Max, you seem to have a well-balanced attitude so I'm happy to ask you about the rationale for the exit from the trial.

    I'm not so cynical as to suppose that it's designed to manipulate the apparent success figures of the trial! I imagine that the exit criteria are ethically based on factors such as toleration (the cure being worse than the disease) or progression, suggesting that it hasn't worked/has stopped working and accordingly trying something else is now in the patient's best interests. Is this correct?

    Both of those criteria seem problematical and I presume medical science is, necessarily, feeling its way with these new therapies. Switching, however, seems a good idea on several grounds. First, it may wrong-foot the cancer in its endeavour to adadpt and survive (I'm using a teleological description here just as shorthand rather than with tacit assumptions).

    Next, a break from a given therapy may not be permanent - sometimes success is enjoyed on a re-visit to an earlier therapy, the patient having had a refractory period in which to recover from side-effects. Then, again, we may not yet know enough, for certain, about the latencies to benefits and to side-effects - the information you give above is probably the best guess so far but we are all so different and there may be delayed benefits for some patients that we don't yet know about and that may be camouflaged by the change of regimen.

    I'd be interested in your thoughts on the above (and the rationale of the decision) but, in any case, I take the opportunity to wish you every success on Sutent. Though not as new as the PD1, it's still pretty new and all indications are that it can be very effective.

    switching
    I guess my onc summed it up best: If you are progressing on [whatever] you don't want to be taking it.

    My dim impression is that switching due to side-effects is often a decision of the patient (though I was told if I lose any more weight... or if my BP goes any higher...) whereas even the slightest progression (mine was miniscule) is more objective and defined by the drug co (for trials).

    It is also my dim impression that once I leave a clinical trial, the drug won't be avail to me to try again until/unless it is FDA released.
  • Max Power
    Max Power Member Posts: 60
    #8
    Max Power said:

    switching
    I guess my onc summed it up best: If you are progressing on [whatever] you don't want to be taking it.

    My dim impression is that switching due to side-effects is often a decision of the patient (though I was told if I lose any more weight... or if my BP goes any higher...) whereas even the slightest progression (mine was miniscule) is more objective and defined by the drug co (for trials).

    It is also my dim impression that once I leave a clinical trial, the drug won't be avail to me to try again until/unless it is FDA released.

    another thing
    I haven't asked, but sometimes I think that, because I'm asymptomatic, the objective is to simply keep the lesions as small as possible. As of today, if I were to stop taking any drug, I would feel great for awhile at least. That is an enviable state compared to some the docs have seen.

    To wait a bit to see if the new drug will take hold is against that philosophy.
  • alice124
    alice124 CSN Member Posts: 896 Member
    #9
    Texas_wedge said:

    Switching
    Max, you seem to have a well-balanced attitude so I'm happy to ask you about the rationale for the exit from the trial.

    I'm not so cynical as to suppose that it's designed to manipulate the apparent success figures of the trial! I imagine that the exit criteria are ethically based on factors such as toleration (the cure being worse than the disease) or progression, suggesting that it hasn't worked/has stopped working and accordingly trying something else is now in the patient's best interests. Is this correct?

    Both of those criteria seem problematical and I presume medical science is, necessarily, feeling its way with these new therapies. Switching, however, seems a good idea on several grounds. First, it may wrong-foot the cancer in its endeavour to adadpt and survive (I'm using a teleological description here just as shorthand rather than with tacit assumptions).

    Next, a break from a given therapy may not be permanent - sometimes success is enjoyed on a re-visit to an earlier therapy, the patient having had a refractory period in which to recover from side-effects. Then, again, we may not yet know enough, for certain, about the latencies to benefits and to side-effects - the information you give above is probably the best guess so far but we are all so different and there may be delayed benefits for some patients that we don't yet know about and that may be camouflaged by the change of regimen.

    I'd be interested in your thoughts on the above (and the rationale of the decision) but, in any case, I take the opportunity to wish you every success on Sutent. Though not as new as the PD1, it's still pretty new and all indications are that it can be very effective.

    discontinuation of trial
    Tex / Max,

    Interesting discussion. Thanks for having it.

    “I'm not so cynical as to suppose that it's designed to manipulate the apparent success figures of the trial!” An AHA moment for me!

    Being green and relatively new to the trial world, it’s not something that would have occurred to me. But thought and possibility is probably something to keep in the back of mind.

    Tex-thanks for mentioning it even if not supposing it.
  • alice124
    alice124 CSN Member Posts: 896 Member
    #10
    12%
    Tac - just wondering if any of the pain has subsided with reduction?
  • tacyarts
    tacyarts Member Posts: 73
    #11
    alice124 said:

    12%
    Tac - just wondering if any of the pain has subsided with reduction?

    Pain
    Yes I have had some pain flare ups in the chest stop happening. A few times a day my chest would hurt drastically but haven't had them since 3 weeks into trial. The leg pain is unchanged since no reduction there. Alice, I didn't know if you had seen that Monica told me wrong on dosage that I was receiving , I am getting 5 mg dose.
  • alice124
    alice124 CSN Member Posts: 896 Member
    #12
    tacyarts said:

    Pain
    Yes I have had some pain flare ups in the chest stop happening. A few times a day my chest would hurt drastically but haven't had them since 3 weeks into trial. The leg pain is unchanged since no reduction there. Alice, I didn't know if you had seen that Monica told me wrong on dosage that I was receiving , I am getting 5 mg dose.

    dosage
    Yes I did see that. I believe that's the highest dosage now (at Hopkins). The maximum dosage started out at 10 mg but then was changed to 5 mg (remember John signing an addendum reducing the max dosage from 10 mg to 5 mg even though it did not directly impact him.) He's on 2 mg, what they refer to as the active dose. He too has been told the bone mets are much slower to respond. He has his next scan on Wednesday, 10/24/12. Keeping our fingers crossed.

    I assume you're still unable to work. What kind of work do you do?
  • angec
    angec CSN Member Posts: 924 Member
    #13
    alice124 said:

    dosage
    Yes I did see that. I believe that's the highest dosage now (at Hopkins). The maximum dosage started out at 10 mg but then was changed to 5 mg (remember John signing an addendum reducing the max dosage from 10 mg to 5 mg even though it did not directly impact him.) He's on 2 mg, what they refer to as the active dose. He too has been told the bone mets are much slower to respond. He has his next scan on Wednesday, 10/24/12. Keeping our fingers crossed.

    I assume you're still unable to work. What kind of work do you do?

    Alice, just wondering. Did
    Alice, just wondering. Did they give John radiation for the bone mets? I hear radiation really helps them disappear faster and greatly helps the pain. If they didnt' offer it to him for the bones, is there a possibility of asking for it? Fox has done well with it! All my best to you and John!
  • ClaraW
    ClaraW Member Posts: 64
    #14
    alice124 said:

    discontinuation of trial
    Tex / Max,

    Interesting discussion. Thanks for having it.

    “I'm not so cynical as to suppose that it's designed to manipulate the apparent success figures of the trial!” An AHA moment for me!

    Being green and relatively new to the trial world, it’s not something that would have occurred to me. But thought and possibility is probably something to keep in the back of mind.

    Tex-thanks for mentioning it even if not supposing it.

    agree lol
    That's why there is intention-to-treat analysis in biostatistics. So RCT that use ITT analysis is more transparent
  • alice124
    alice124 CSN Member Posts: 896 Member
    #15
    angec said:

    Alice, just wondering. Did
    Alice, just wondering. Did they give John radiation for the bone mets? I hear radiation really helps them disappear faster and greatly helps the pain. If they didnt' offer it to him for the bones, is there a possibility of asking for it? Fox has done well with it! All my best to you and John!

    radiation
    They did briefly mention it at one point but then quickly dismissed the idea, saying it was off protocol for the trial.

    Since he has done pretty well managing with pain oxy***es, he hasn't pushed the issue. He also attributes the oxycodone/oxycontin to his NOT experiencing the diarrhea that often accompanies of use of Votrient, since the oxy***s are basically immodium with opiates.
  • Texas_wedge
    Texas_wedge CSN Member Posts: 2,798
    #16
    ClaraW said:

    agree lol
    That's why there is intention-to-treat analysis in biostatistics. So RCT that use ITT analysis is more transparent

    agree
    Clara, before I get back to you re the brilliant research work you've done on my behalf, a quick question:

    Have you come across and if so would you recommend a book from 2010 - James Penston's Stats.con: How We've Been Fooled by Statistics-Based Research in Medicine?
  • angec
    angec CSN Member Posts: 924 Member
    #17
    alice124 said:

    radiation
    They did briefly mention it at one point but then quickly dismissed the idea, saying it was off protocol for the trial.

    Since he has done pretty well managing with pain oxy***es, he hasn't pushed the issue. He also attributes the oxycodone/oxycontin to his NOT experiencing the diarrhea that often accompanies of use of Votrient, since the oxy***s are basically immodium with opiates.

    I understand. I was on
    I understand. I was on heavy pain meds at one point, and the runs are not the culprit.. The constipation is another thing! LOL I guess it might have done good for John to get the radiation, it would probably work quicker on eliminating the bone mets and it would be ideal to not have to take those pain meds for too long. But i guess he has to be the good patient and take what they give him. Does that mean that as long as he is on the trial his treatment regimen cannot change? I wonder if they are aware that others on very similar trials are in fact getting the radiation(like our FOX). Thank you Alice for sharing. xxoo much love to you!
  • ClaraW
    ClaraW Member Posts: 64
    #18
    Texas_wedge said:

    agree
    Clara, before I get back to you re the brilliant research work you've done on my behalf, a quick question:

    Have you come across and if so would you recommend a book from 2010 - James Penston's Stats.con: How We've Been Fooled by Statistics-Based Research in Medicine?

    stats con?
    Sorry, I haven't come across this book. I guess if you'd like to know how to critically appraise a trial, there's better tools (guidelines) out there which are only a couple of pages to read. I rarely read big books nowadays =). I've read very little on statistics and know hardly anything about research, thus my understanding in this area is very very superficial.
  • garym
    garym CSN Member Posts: 1,647
    #19
    Three cheers...
    for shrinkage...Way to go Tacy!!!
  • tacyarts
    tacyarts Member Posts: 73
    #20
    alice124 said:

    dosage
    Yes I did see that. I believe that's the highest dosage now (at Hopkins). The maximum dosage started out at 10 mg but then was changed to 5 mg (remember John signing an addendum reducing the max dosage from 10 mg to 5 mg even though it did not directly impact him.) He's on 2 mg, what they refer to as the active dose. He too has been told the bone mets are much slower to respond. He has his next scan on Wednesday, 10/24/12. Keeping our fingers crossed.

    I assume you're still unable to work. What kind of work do you do?

    Work
    I've owned a restaurant named The Stray Cat Cafe for 17 years now in Moorefield WV. I am putting so much exta work on my wife's shoulders by me being sick, she is a trooper!!
  • tacyarts
    tacyarts Member Posts: 73
    #21
    alice124 said:

    dosage
    Yes I did see that. I believe that's the highest dosage now (at Hopkins). The maximum dosage started out at 10 mg but then was changed to 5 mg (remember John signing an addendum reducing the max dosage from 10 mg to 5 mg even though it did not directly impact him.) He's on 2 mg, what they refer to as the active dose. He too has been told the bone mets are much slower to respond. He has his next scan on Wednesday, 10/24/12. Keeping our fingers crossed.

    I assume you're still unable to work. What kind of work do you do?

    Work
    I've owned a restaurant named The Stray Cat Cafe for 17 years now in Moorefield WV. I am putting so much exta work on my wife's shoulders by me being sick, she is a trooper!!

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