Just started P13K/MTOR Clinical Trial

This topic has 33 replies, 7 voices, and was last updated 13 years, 7 months ago by MariaH.

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- October 19, 2011 at 8:13 pm
- Quote
rbruce
Participant
Started a clinical trial at UCSF for a p13k inhibitor trial, http://clinicaltrials.gov/ct2/show/NCT00972686 I had debated on waiting for a PD1 trial but after seeing the Melanoma Molecular Disease Model at http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model I decided to give the P13k tria

Started a clinical trial at UCSF for a p13k inhibitor trial, http://clinicaltrials.gov/ct2/show/NCT00972686 I had debated on waiting for a PD1 trial but after seeing the Melanoma Molecular Disease Model at http://mmdm.cancercommons.org/ml/index.php/A_Melanoma_Molecular_Disease_Model I decided to give the P13k trial a shot as it is listed as the "potentially revelant theraputic" for the NRAS mutation which I have, not BRAF like so many others. This is the first time I ever saw a NRAS theraputic option! The Melanoma Molecular Disease Model is meant to be collaborative by researchers and represents an awesome data collection point for all the different melanoma mutations.

The trial started with lots of tests for qualifying then a a 24 hour stay the first day of dosing so they could collect data via blood, ekg's, vitals, etc. I was advised that I was the highest dosed patient in the trial so far (twice the doseage) which made me worry a bit. My Doctor just said "well, that's twice the potential for it to work". I was really worried about the side effects after spending 4 weeks in the hospital over 16 weeks of biochemo. WELL, so far, so good. No side effects other than I'm a bit tired. If this is the "new way of treating cancer", I'm in! Plus, my Doctor will move me over to the PD-1 trial if we don't see some results after my scans at 6 weeks.

I'm having a really good day! Hope you do as well.

Robert

Viewing 14 reply threads

Replies

- - October 19, 2011 at 8:31 pm
  - Quote
  jim Breitfeller
  Participant
  Robert,
  
  Thanks for the update,
  
  Please keep us posted .
  
  Wish you all the best
  
  Jimmy B
- - October 19, 2011 at 8:31 pm
  - Quote
  jim Breitfeller
  Participant
  Robert,
  
  Thanks for the update,
  
  Please keep us posted .
  
  Wish you all the best
  
  Jimmy B
- - October 19, 2011 at 8:31 pm
  - Quote
  jim Breitfeller
  Participant
  Robert,
  
  Thanks for the update,
  
  Please keep us posted .
  
  Wish you all the best
  
  Jimmy B
- - October 19, 2011 at 11:03 pm
  - Quote
  jag
  Participant
  Rob, how did the biochemo work out? what were the before/after results?
- - October 19, 2011 at 11:03 pm
  - Quote
  jag
  Participant
  Rob, how did the biochemo work out? what were the before/after results?
  - October 23, 2011 at 1:00 am
    
    Quote
    rbruce
    Participant
    
    Jag,
    
    Biochemo was an asskicker! 1 week in ICU every 3rd week X 4 was very hard on me. Vinblastin, Carboplantin, Temodar, Interferon, and IL2 all pumping into me the entire time in the hospital. Although I had no regression, I had no progression which I guess could have been due to the treatment. I lost 40 pounds and have neuropathy in my feet as momentos of my treatment. If anyone is considering biochemo I would highly suggest that you ask the Dr. recomending it to substantiate why you should do it. I do know that some have been complete responders, but that may just be the IL-2 which on it's own has showm complete response in 5-6% of patients.
    
    Robert
  - October 23, 2011 at 1:00 am
    
    Quote
    rbruce
    Participant
    
    Jag,
    
    Biochemo was an asskicker! 1 week in ICU every 3rd week X 4 was very hard on me. Vinblastin, Carboplantin, Temodar, Interferon, and IL2 all pumping into me the entire time in the hospital. Although I had no regression, I had no progression which I guess could have been due to the treatment. I lost 40 pounds and have neuropathy in my feet as momentos of my treatment. If anyone is considering biochemo I would highly suggest that you ask the Dr. recomending it to substantiate why you should do it. I do know that some have been complete responders, but that may just be the IL-2 which on it's own has showm complete response in 5-6% of patients.
    
    Robert
  - October 23, 2011 at 1:00 am
    
    Quote
    rbruce
    Participant
    
    Jag,
    
    Biochemo was an asskicker! 1 week in ICU every 3rd week X 4 was very hard on me. Vinblastin, Carboplantin, Temodar, Interferon, and IL2 all pumping into me the entire time in the hospital. Although I had no regression, I had no progression which I guess could have been due to the treatment. I lost 40 pounds and have neuropathy in my feet as momentos of my treatment. If anyone is considering biochemo I would highly suggest that you ask the Dr. recomending it to substantiate why you should do it. I do know that some have been complete responders, but that may just be the IL-2 which on it's own has showm complete response in 5-6% of patients.
    
    Robert
- - October 19, 2011 at 11:03 pm
  - Quote
  jag
  Participant
  Rob, how did the biochemo work out? what were the before/after results?
- - October 20, 2011 at 1:28 am
  - Quote
  MaryD
  Participant
  That's great that you had minimal side effects – hoping that good news continues for you. I'm assuming you may be seeing Dr. Daud over at UCSF?
  
  Wishing you great results!
  
  Mary
- - October 20, 2011 at 1:28 am
  - Quote
  MaryD
  Participant
  That's great that you had minimal side effects – hoping that good news continues for you. I'm assuming you may be seeing Dr. Daud over at UCSF?
  
  Wishing you great results!
  
  Mary
  - October 23, 2011 at 1:05 am
    
    Quote
    rbruce
    Participant
    
    Mary,
    
    Yes I am seeing Dr. Daud. I checked out your profile and don't see any new reports since 09. How are you doing? Did the IL2 work for you?
    
    Robert
  - October 23, 2011 at 1:05 am
    
    Quote
    rbruce
    Participant
    
    Mary,
    
    Yes I am seeing Dr. Daud. I checked out your profile and don't see any new reports since 09. How are you doing? Did the IL2 work for you?
    
    Robert
  - October 23, 2011 at 1:05 am
    
    Quote
    rbruce
    Participant
    
    Mary,
    
    Yes I am seeing Dr. Daud. I checked out your profile and don't see any new reports since 09. How are you doing? Did the IL2 work for you?
    
    Robert
- - October 20, 2011 at 1:28 am
  - Quote
  MaryD
  Participant
  That's great that you had minimal side effects – hoping that good news continues for you. I'm assuming you may be seeing Dr. Daud over at UCSF?
  
  Wishing you great results!
  
  Mary
- - October 20, 2011 at 8:03 am
  - Quote
  JerryfromFauq
  Participant
  Thought of you and some others when I posted that. The NRAS mutation has lacked the needed research in the past. It, like C-kit and some other mutations has been behind the curve. The model does indeed bring out many points that we all should be aware of in this war. Good luck and keep us informed, side effects, successes etc.
  
  Praying for you.
- - October 20, 2011 at 8:03 am
  - Quote
  JerryfromFauq
  Participant
  Thought of you and some others when I posted that. The NRAS mutation has lacked the needed research in the past. It, like C-kit and some other mutations has been behind the curve. The model does indeed bring out many points that we all should be aware of in this war. Good luck and keep us informed, side effects, successes etc.
  
  Praying for you.
- - October 20, 2011 at 8:03 am
  - Quote
  JerryfromFauq
  Participant
  Thought of you and some others when I posted that. The NRAS mutation has lacked the needed research in the past. It, like C-kit and some other mutations has been behind the curve. The model does indeed bring out many points that we all should be aware of in this war. Good luck and keep us informed, side effects, successes etc.
  
  Praying for you.
- - October 20, 2011 at 11:17 am
  - Quote
  MariaH
  Participant
  Congrats on getting in the trial Robert! Dave's oncologist spoke briefly about this when he was in having IL-2. I casually (lol) asked him what was new in the clinical trial world and he mentioned the NRAS research. Dave is B-RAF wildtype. May I ask how you knew you tested positive for NRAS? Did the facility doing the clinical trial test for it or your oncologist? Dave has scans next Tuesday to see if he responded to IL-2, but we want to have all our ducks in a row just in case.
  
  Best wishes to you and please keep us posted.
  
  Maria
  - October 21, 2011 at 8:09 pm
    
    Quote
    boot2aboot
    Participant
    
    Robert,
    
    May you be the poster boy of this clinical trial, with no side effects and miraculous results!
    
    choel
  - October 23, 2011 at 1:13 am
    
    Quote
    rbruce
    Participant
    
    Thanks Choel, I've never been a poster boy but would love to be. Been keeping you in my prayers!
    
    Robert
  - October 23, 2011 at 1:13 am
    
    Quote
    rbruce
    Participant
    
    Thanks Choel, I've never been a poster boy but would love to be. Been keeping you in my prayers!
    
    Robert
  - October 23, 2011 at 1:13 am
    
    Quote
    rbruce
    Participant
    
    Thanks Choel, I've never been a poster boy but would love to be. Been keeping you in my prayers!
    
    Robert
  - October 21, 2011 at 8:09 pm
    
    Quote
    boot2aboot
    Participant
    
    Robert,
    
    May you be the poster boy of this clinical trial, with no side effects and miraculous results!
    
    choel
  - October 21, 2011 at 8:09 pm
    
    Quote
    boot2aboot
    Participant
    
    Robert,
    
    May you be the poster boy of this clinical trial, with no side effects and miraculous results!
    
    choel
  - October 23, 2011 at 1:11 am
    
    Quote
    rbruce
    Participant
    
    Maria,
    
    UCSF did genetic testing on my blocks to see what particular mutation I had and it came up NRAS+. If Dave is BRAF doesn't he qualify for a BRAF inhibitor? And yes, it's good to have your ducks in a row. I call it "arrows in my quiver". I still have Anti-PD-1 and Yervoy as backup plans but I'm very optomisitc that this is going to slow or stop, and maybe even reverse things for me. Hope his scans show a great response. Gotta have hope!
    
    Robert
  - October 23, 2011 at 3:07 pm
    
    Quote
    MariaH
    Participant
    
    Robert,
    
    Dave has an appointment on Wednesday, so I am going to ask about the genetic testing. Dave is B-RAF wildtype, which is the same as B-RAF negative. He is also keeping the Anti-PD-1 and Yervoy as backup plans.
    
    Best of luck to you!
    
    Maria
  - October 23, 2011 at 3:07 pm
    
    Quote
    MariaH
    Participant
    
    Robert,
    
    Dave has an appointment on Wednesday, so I am going to ask about the genetic testing. Dave is B-RAF wildtype, which is the same as B-RAF negative. He is also keeping the Anti-PD-1 and Yervoy as backup plans.
    
    Best of luck to you!
    
    Maria
  - October 23, 2011 at 3:07 pm
    
    Quote
    MariaH
    Participant
    
    Robert,
    
    Dave has an appointment on Wednesday, so I am going to ask about the genetic testing. Dave is B-RAF wildtype, which is the same as B-RAF negative. He is also keeping the Anti-PD-1 and Yervoy as backup plans.
    
    Best of luck to you!
    
    Maria
  - October 23, 2011 at 1:11 am
    
    Quote
    rbruce
    Participant
    
    Maria,
    
    UCSF did genetic testing on my blocks to see what particular mutation I had and it came up NRAS+. If Dave is BRAF doesn't he qualify for a BRAF inhibitor? And yes, it's good to have your ducks in a row. I call it "arrows in my quiver". I still have Anti-PD-1 and Yervoy as backup plans but I'm very optomisitc that this is going to slow or stop, and maybe even reverse things for me. Hope his scans show a great response. Gotta have hope!
    
    Robert
  - October 23, 2011 at 1:11 am
    
    Quote
    rbruce
    Participant
    
    Maria,
    
    UCSF did genetic testing on my blocks to see what particular mutation I had and it came up NRAS+. If Dave is BRAF doesn't he qualify for a BRAF inhibitor? And yes, it's good to have your ducks in a row. I call it "arrows in my quiver". I still have Anti-PD-1 and Yervoy as backup plans but I'm very optomisitc that this is going to slow or stop, and maybe even reverse things for me. Hope his scans show a great response. Gotta have hope!
    
    Robert
- - October 20, 2011 at 11:17 am
  - Quote
  MariaH
  Participant
  Congrats on getting in the trial Robert! Dave's oncologist spoke briefly about this when he was in having IL-2. I casually (lol) asked him what was new in the clinical trial world and he mentioned the NRAS research. Dave is B-RAF wildtype. May I ask how you knew you tested positive for NRAS? Did the facility doing the clinical trial test for it or your oncologist? Dave has scans next Tuesday to see if he responded to IL-2, but we want to have all our ducks in a row just in case.
  
  Best wishes to you and please keep us posted.
  
  Maria
- - October 20, 2011 at 11:17 am
  - Quote
  MariaH
  Participant
  Congrats on getting in the trial Robert! Dave's oncologist spoke briefly about this when he was in having IL-2. I casually (lol) asked him what was new in the clinical trial world and he mentioned the NRAS research. Dave is B-RAF wildtype. May I ask how you knew you tested positive for NRAS? Did the facility doing the clinical trial test for it or your oncologist? Dave has scans next Tuesday to see if he responded to IL-2, but we want to have all our ducks in a row just in case.
  
  Best wishes to you and please keep us posted.
  
  Maria