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PD1

› Forums › General Melanoma Community › PD1

  • Post
    • September 7, 2012 at 4:30 am
    markkramersf
    Participant

    Looking on going to Tampa for PD1 treatment. Want  to get a run down of how long the treatment takes, and help on getting lodging options. I have stage 4 melanoma and have been through IL2, which did not work. I am coming from the west coast, and want to get a break down on what the PD1 treatment entails. Any help would be greatly appreciated.

     

    Mark

    Looking on going to Tampa for PD1 treatment. Want  to get a run down of how long the treatment takes, and help on getting lodging options. I have stage 4 melanoma and have been through IL2, which did not work. I am coming from the west coast, and want to get a break down on what the PD1 treatment entails. Any help would be greatly appreciated.

     

    Mark

Viewing 14 reply threads
  • Replies
      • September 7, 2012 at 3:20 pm
      killmel
      Participant

      Hi Mark,

       

      I noticed that you have been treated at UCSF.  Robert Bruce is also being treated on a Merck PD1 trial at UCSF.

      Why go all the way toTampa, if you can get into a PD1 trial at UCSF???

      Good Luck

      Joe

      • September 7, 2012 at 3:20 pm
      killmel
      Participant

      Hi Mark,

       

      I noticed that you have been treated at UCSF.  Robert Bruce is also being treated on a Merck PD1 trial at UCSF.

      Why go all the way toTampa, if you can get into a PD1 trial at UCSF???

      Good Luck

      Joe

      • September 7, 2012 at 3:20 pm
      killmel
      Participant

      Hi Mark,

       

      I noticed that you have been treated at UCSF.  Robert Bruce is also being treated on a Merck PD1 trial at UCSF.

      Why go all the way toTampa, if you can get into a PD1 trial at UCSF???

      Good Luck

      Joe

      • September 7, 2012 at 3:28 pm
      Bubbles
      Participant
      I have been in the resected, melanoma stage IV trial at Moffitt since December 2010. I travel for treatment from Chattanooga, TN. The story of my adventures is on my blog: chaoticallypreciselifeloveandmelanoma.blogspot.com

      Good luck. C

      • September 7, 2012 at 3:28 pm
      Bubbles
      Participant
      I have been in the resected, melanoma stage IV trial at Moffitt since December 2010. I travel for treatment from Chattanooga, TN. The story of my adventures is on my blog: chaoticallypreciselifeloveandmelanoma.blogspot.com

      Good luck. C

      • September 7, 2012 at 3:28 pm
      Bubbles
      Participant
      I have been in the resected, melanoma stage IV trial at Moffitt since December 2010. I travel for treatment from Chattanooga, TN. The story of my adventures is on my blog: chaoticallypreciselifeloveandmelanoma.blogspot.com

      Good luck. C

      • September 7, 2012 at 8:58 pm
      audgator
      Participant

      It's about a half day thing. I usually start around 10 and am headed home about 3. I have blood drawn first, then see my onc. She usually has the blood results and does a physical. Then its back to the reasearch unit for the infusion. The infusion itself is only about a half hour, but there is a wait beforehand for the drug to come from the pharmacy and an hour wait afterwards while they take my vitals every 15 minutes. I used to blow that off but the drug company was insisting they keep people around more.  When I go for scans, I go the night before and stay in a Hampton Inn about 5 minutes away. They have a Moffitt rate and a courtesy van. Trouble is I can't eat the free breakfast because I can't eat before the scans. Your biggest problem will be the trip from the airport. It's not close.    Dan

        • September 7, 2012 at 9:04 pm
        audgator
        Participant

        …or were you asking about the whole 24 week process?    Dan

        • September 10, 2012 at 6:33 pm
        markkramersf
        Participant

        Thanks for the information. If you could also tell me about the 24 week process, how many trip do you make to FL, how often, how long is the stay for the treatment?

        Mark

        • September 13, 2012 at 12:33 am
        audgator
        Participant

        Sorry, Mark. I didn't check the box to get notified of posts to this thread and your original post is now on page 3 on my little netbook. I live in Fl so Moffitt is about a 3-hour trip.  The first part of the trial invloves infusions once every two weeks for 12 weeks ( 6 infusions). Then they do a CT scan & MRI to check progress. If worse, the trial ends for that subject. If the same or better, there is another 12-week round the same as the first including the CT & MRI at the end. Then the maintenance phase which I just entered: infusion & scans once every 3 months for 2 years.

        • September 13, 2012 at 1:45 am
        audgator
        Participant

        I should say no one should reject seeking a certain trial based on any part of what I or someone else may say.  Different cohorts may have different schedules and/or procedures.   Dan

        • September 15, 2012 at 7:43 am
        markkramersf
        Participant
        Thank you Dan for all the helpful information.

        Mark

        • September 15, 2012 at 7:43 am
        markkramersf
        Participant
        Thank you Dan for all the helpful information.

        Mark

        • September 15, 2012 at 7:43 am
        markkramersf
        Participant
        Thank you Dan for all the helpful information.

        Mark

        • September 13, 2012 at 1:45 am
        audgator
        Participant

        I should say no one should reject seeking a certain trial based on any part of what I or someone else may say.  Different cohorts may have different schedules and/or procedures.   Dan

        • September 13, 2012 at 1:45 am
        audgator
        Participant

        I should say no one should reject seeking a certain trial based on any part of what I or someone else may say.  Different cohorts may have different schedules and/or procedures.   Dan

        • September 13, 2012 at 12:33 am
        audgator
        Participant

        Sorry, Mark. I didn't check the box to get notified of posts to this thread and your original post is now on page 3 on my little netbook. I live in Fl so Moffitt is about a 3-hour trip.  The first part of the trial invloves infusions once every two weeks for 12 weeks ( 6 infusions). Then they do a CT scan & MRI to check progress. If worse, the trial ends for that subject. If the same or better, there is another 12-week round the same as the first including the CT & MRI at the end. Then the maintenance phase which I just entered: infusion & scans once every 3 months for 2 years.

        • September 13, 2012 at 12:33 am
        audgator
        Participant

        Sorry, Mark. I didn't check the box to get notified of posts to this thread and your original post is now on page 3 on my little netbook. I live in Fl so Moffitt is about a 3-hour trip.  The first part of the trial invloves infusions once every two weeks for 12 weeks ( 6 infusions). Then they do a CT scan & MRI to check progress. If worse, the trial ends for that subject. If the same or better, there is another 12-week round the same as the first including the CT & MRI at the end. Then the maintenance phase which I just entered: infusion & scans once every 3 months for 2 years.

        • September 10, 2012 at 6:33 pm
        markkramersf
        Participant

        Thanks for the information. If you could also tell me about the 24 week process, how many trip do you make to FL, how often, how long is the stay for the treatment?

        Mark

        • September 10, 2012 at 6:33 pm
        markkramersf
        Participant

        Thanks for the information. If you could also tell me about the 24 week process, how many trip do you make to FL, how often, how long is the stay for the treatment?

        Mark

        • September 7, 2012 at 9:04 pm
        audgator
        Participant

        …or were you asking about the whole 24 week process?    Dan

        • September 7, 2012 at 9:04 pm
        audgator
        Participant

        …or were you asking about the whole 24 week process?    Dan

      • September 7, 2012 at 8:58 pm
      audgator
      Participant

      It's about a half day thing. I usually start around 10 and am headed home about 3. I have blood drawn first, then see my onc. She usually has the blood results and does a physical. Then its back to the reasearch unit for the infusion. The infusion itself is only about a half hour, but there is a wait beforehand for the drug to come from the pharmacy and an hour wait afterwards while they take my vitals every 15 minutes. I used to blow that off but the drug company was insisting they keep people around more.  When I go for scans, I go the night before and stay in a Hampton Inn about 5 minutes away. They have a Moffitt rate and a courtesy van. Trouble is I can't eat the free breakfast because I can't eat before the scans. Your biggest problem will be the trip from the airport. It's not close.    Dan

      • September 7, 2012 at 8:58 pm
      audgator
      Participant

      It's about a half day thing. I usually start around 10 and am headed home about 3. I have blood drawn first, then see my onc. She usually has the blood results and does a physical. Then its back to the reasearch unit for the infusion. The infusion itself is only about a half hour, but there is a wait beforehand for the drug to come from the pharmacy and an hour wait afterwards while they take my vitals every 15 minutes. I used to blow that off but the drug company was insisting they keep people around more.  When I go for scans, I go the night before and stay in a Hampton Inn about 5 minutes away. They have a Moffitt rate and a courtesy van. Trouble is I can't eat the free breakfast because I can't eat before the scans. Your biggest problem will be the trip from the airport. It's not close.    Dan

      • September 15, 2012 at 2:49 am
      rbruce
      Participant

      Mark,  I am on the Anti PD-1 trial at UCSF, have you checked to see if you can get in there?  Dr. Daud and Dr. Cha are awesome and the trial is working for me with over 50% tumor reduction.  I'd be glad to provide you the clinical trial coordinators contact info,  Let me know.  Robert

        • September 15, 2012 at 7:41 am
        markkramersf
        Participant
        My Dr is working on getting me in the trial, he said the waiting list is long. I am thinking about starting YerVoy if I can not get it, or starting the PD1in FL

        Thanks
        Mark

        • September 16, 2012 at 4:12 am
        rbruce
        Participant

        Mark, you may want to talk to Dr. O'Day at the Beverly  Hills clinic or Dr. Hamid at The Angeles Clinic.  I believe they had openings in their Pd1 trials.  Closer to SF than the east coast.  Good luck.  Robert

        • September 16, 2012 at 4:12 am
        rbruce
        Participant

        Mark, you may want to talk to Dr. O'Day at the Beverly  Hills clinic or Dr. Hamid at The Angeles Clinic.  I believe they had openings in their Pd1 trials.  Closer to SF than the east coast.  Good luck.  Robert

        • September 16, 2012 at 4:12 am
        rbruce
        Participant

        Mark, you may want to talk to Dr. O'Day at the Beverly  Hills clinic or Dr. Hamid at The Angeles Clinic.  I believe they had openings in their Pd1 trials.  Closer to SF than the east coast.  Good luck.  Robert

        • September 15, 2012 at 7:41 am
        markkramersf
        Participant
        My Dr is working on getting me in the trial, he said the waiting list is long. I am thinking about starting YerVoy if I can not get it, or starting the PD1in FL

        Thanks
        Mark

        • September 15, 2012 at 7:41 am
        markkramersf
        Participant
        My Dr is working on getting me in the trial, he said the waiting list is long. I am thinking about starting YerVoy if I can not get it, or starting the PD1in FL

        Thanks
        Mark

      • September 15, 2012 at 2:49 am
      rbruce
      Participant

      Mark,  I am on the Anti PD-1 trial at UCSF, have you checked to see if you can get in there?  Dr. Daud and Dr. Cha are awesome and the trial is working for me with over 50% tumor reduction.  I'd be glad to provide you the clinical trial coordinators contact info,  Let me know.  Robert

      • September 15, 2012 at 2:49 am
      rbruce
      Participant

      Mark,  I am on the Anti PD-1 trial at UCSF, have you checked to see if you can get in there?  Dr. Daud and Dr. Cha are awesome and the trial is working for me with over 50% tumor reduction.  I'd be glad to provide you the clinical trial coordinators contact info,  Let me know.  Robert

      • September 16, 2012 at 5:25 pm
      killmel
      Participant

      Hi Mark,

       

      I know there are openings in the Merck pd1 trial with Dr. Ribas, @UCLA…he is  the BEST Doctor. I understand that he has open seats now.

      I suggest you contact him ASAP. He does reply to emails.

      aribas@mednet.ucla.edu
      310 206-3928

      Good Luck.

      Mary

        • September 16, 2012 at 5:45 pm
        killmel
        Participant

        Mark

        Sorry, I forgot to tell you that I did contact Angeles Clinic regarding PD1 trials. Presently, I was told that all the seats were full for melanoma patients but there are opens sits for lung cancer patients.

        I am not sure about Beverly Hills Cancer Center but Dr. O'day is also a wonderful doctor. Very experienced with Melanoma; that is his specialty. If you contact Dr. O'day, please post if he is doing clinical trials

        Here is his email. He will also reply to emails: stevenjoday@gmail.com

        Mary

        • September 16, 2012 at 5:45 pm
        killmel
        Participant

        Mark

        Sorry, I forgot to tell you that I did contact Angeles Clinic regarding PD1 trials. Presently, I was told that all the seats were full for melanoma patients but there are opens sits for lung cancer patients.

        I am not sure about Beverly Hills Cancer Center but Dr. O'day is also a wonderful doctor. Very experienced with Melanoma; that is his specialty. If you contact Dr. O'day, please post if he is doing clinical trials

        Here is his email. He will also reply to emails: stevenjoday@gmail.com

        Mary

        • September 16, 2012 at 5:45 pm
        killmel
        Participant

        Mark

        Sorry, I forgot to tell you that I did contact Angeles Clinic regarding PD1 trials. Presently, I was told that all the seats were full for melanoma patients but there are opens sits for lung cancer patients.

        I am not sure about Beverly Hills Cancer Center but Dr. O'day is also a wonderful doctor. Very experienced with Melanoma; that is his specialty. If you contact Dr. O'day, please post if he is doing clinical trials

        Here is his email. He will also reply to emails: stevenjoday@gmail.com

        Mary

      • September 16, 2012 at 5:25 pm
      killmel
      Participant

      Hi Mark,

       

      I know there are openings in the Merck pd1 trial with Dr. Ribas, @UCLA…he is  the BEST Doctor. I understand that he has open seats now.

      I suggest you contact him ASAP. He does reply to emails.

      aribas@mednet.ucla.edu
      310 206-3928

      Good Luck.

      Mary

      • September 16, 2012 at 5:25 pm
      killmel
      Participant

      Hi Mark,

       

      I know there are openings in the Merck pd1 trial with Dr. Ribas, @UCLA…he is  the BEST Doctor. I understand that he has open seats now.

      I suggest you contact him ASAP. He does reply to emails.

      aribas@mednet.ucla.edu
      310 206-3928

      Good Luck.

      Mary

Viewing 14 reply threads
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