MDX-1106

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1
Seemed like a long wait from my initial consult Re: MDX-1106 and finally getting it done. But only 4 weeks. Lots of scans and a biopsy. Enough blood work to keep a vampire family of 4 happy. On Monday, the day began with 6 vials of blood followed by an hour infusion. Had to stay for a 12 hour day so they could cont. to draw blood and take vital signs. Infusion was no big deal. No side effects what so ever. Had to return tues and thurs for more blood work. Last count was 26 vials of blood this week! More on monday the 19th, then nothing until next infusion Jan 3rd. Seems way to easy for something soooo.. promising. Pretty much repeat everything again in January, then just infusions every 3 weeks after that. My response will determine number of infusions. I feel VERY fortunate to have been given this opportunity.

Comments

  • lbinmsp
    lbinmsp Member Posts: 266
    #2
    HEY!
    And congrats on getting started with this trial. I will be very interested in how it goes for you so please keep posting updates (including any and all side effects). Anything new and promising is of special interest to those of us with recurrances. Have a beautiful holiday season!
  • garym
    garym Member Posts: 1,647
    #3
    lbinmsp said:

    HEY!
    And congrats on getting started with this trial. I will be very interested in how it goes for you so please keep posting updates (including any and all side effects). Anything new and promising is of special interest to those of us with recurrances. Have a beautiful holiday season!

    Hey, just above me...
    Its the fox and the hound!!!

    Really bad I know...but I couldn't resist. LOL

    Seriously though, I hope this really is a magic bullet!

    Gary
  • lbinmsp
    lbinmsp Member Posts: 266
    #4
    garym said:

    Hey, just above me...
    Its the fox and the hound!!!

    Really bad I know...but I couldn't resist. LOL

    Seriously though, I hope this really is a magic bullet!

    Gary

    LOVED IT!
    Very creative - and we need all the smiles we can get!
  • garym
    garym Member Posts: 1,647
    #5
    lbinmsp said:

    LOVED IT!
    Very creative - and we need all the smiles we can get!

    Amen to that...
    lb,

    The fear that it will return draws me to the stories of those like you that can stare into the face of the demon time and again and laugh. I am awed by the strength and courage displayed along with the desire to help others traveling the same road. I know that because of the examples set by people like you, fox, and donna lee, to name a few, I will be better prepared if there is ever a next time for me.

    God bless you all,

    Gary
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    garym said:

    Amen to that...
    lb,

    The fear that it will return draws me to the stories of those like you that can stare into the face of the demon time and again and laugh. I am awed by the strength and courage displayed along with the desire to help others traveling the same road. I know that because of the examples set by people like you, fox, and donna lee, to name a few, I will be better prepared if there is ever a next time for me.

    God bless you all,

    Gary

    Amen to that
    Hear, hear.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    Texas_wedge said:

    Amen to that
    Hear, hear.

    MDX
    Gotta tell you all. Gonna start a thread on how to be positive. FLY...Fox Loves You!!!!
  • Gike
    Gike Member Posts: 3
    #8
    MDX working
    Just joined the group.. Of course, like everyone I am very interested to follow your experience in the trial with MDX..My husband had a full nephrectomy the end of Sept., 2011 (right kidney- stage IV- renal cell involvement - no mets at that time). Since then they discovered one small met (5mm) in his lung and possible new met in liver (we find out tomorrow) He is about to begin treatment on Afinator (first time drug- skipped Sutent).
    Please keep us posted on your results and how you're feeling!
    BEST WISHES!!
  • Max Power
    Max Power Member Posts: 60
    #9
    Gike said:

    MDX working
    Just joined the group.. Of course, like everyone I am very interested to follow your experience in the trial with MDX..My husband had a full nephrectomy the end of Sept., 2011 (right kidney- stage IV- renal cell involvement - no mets at that time). Since then they discovered one small met (5mm) in his lung and possible new met in liver (we find out tomorrow) He is about to begin treatment on Afinator (first time drug- skipped Sutent).
    Please keep us posted on your results and how you're feeling!
    BEST WISHES!!

    MDX-1106 info
    For those interested in MDX-1106, also known as PD-1, here are my notes on my 2011 Phase 1 trial (Phase 2 was to start end of 2011):

    General info: Sutent has 40% chance, Avastin 10% chance, PD1 has 37% chance of major response.

    Infusion every 2 weeks. Although one of the purposes of Phase 1 is to determine dosage, for renal patients (the drug is used for a few cancers) they have already found that only one dosage, the smallest, is necessary. It either works or doesn't. Dosage I receive in Phase 1 will be continued for 2 years as long as no progression. If after stop, progression results, can extend for 3rd year.

    PD-1 results usually visible to scans after 1st or 2nd scan. Side effects, if at all, take 1-3mo.

    I had no side-effects, save the anguish of probing for vein every 2 weeks.

    Scans are frequent (I forget frequency) and mine eventually showed a leetle progression so I was out. "You don't want to be taking this if you are progressing."

    For people who this works for, they are grateful not to have the side-effects. One patient even flies from UK to BOS every two weeks for treatment.

    Max
  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    Max Power said:

    MDX-1106 info
    For those interested in MDX-1106, also known as PD-1, here are my notes on my 2011 Phase 1 trial (Phase 2 was to start end of 2011):

    General info: Sutent has 40% chance, Avastin 10% chance, PD1 has 37% chance of major response.

    Infusion every 2 weeks. Although one of the purposes of Phase 1 is to determine dosage, for renal patients (the drug is used for a few cancers) they have already found that only one dosage, the smallest, is necessary. It either works or doesn't. Dosage I receive in Phase 1 will be continued for 2 years as long as no progression. If after stop, progression results, can extend for 3rd year.

    PD-1 results usually visible to scans after 1st or 2nd scan. Side effects, if at all, take 1-3mo.

    I had no side-effects, save the anguish of probing for vein every 2 weeks.

    Scans are frequent (I forget frequency) and mine eventually showed a leetle progression so I was out. "You don't want to be taking this if you are progressing."

    For people who this works for, they are grateful not to have the side-effects. One patient even flies from UK to BOS every two weeks for treatment.

    Max

    Great info
    Great update Max. My infusions are every 3 weeks with scans every 6 weeks. My response has been excellent with near elimination of soft tissue tumors. And there were a crapload of them! Even a couple bone mets had cleared. Seems strange to me that I developed 2 new ones in my rib and spine. But they are being zapped with radiation this week and next.( of course I am getting scans prior to radiation, and before each treatment.) I may go for the Guiness book of world records for the most scans recieved by one person. Then again, I may just go for a Guiness. My side effects have been laziness interuppted by rounds of golf and frequent motorcycle rides. When initially meeting with my oncologist, she asked me, " Would you be happy if we weren't able to cure you but if we could keep you from getting worse." My answer was, "Hell yeah!" I was still working, running 3 miles every other day and weight training 4-5 days a week. With no pain. This summer the pain began from my new mets. I can now happily report that I am PAIN FREE once again.... How fortunate that pt. is able to manage flying in from the UK... I've been worrying about Paulas trips to Nashville from Atlanta.
  • pjune127
    pjune127 Member Posts: 127
    #11
    foxhd said:

    Great info
    Great update Max. My infusions are every 3 weeks with scans every 6 weeks. My response has been excellent with near elimination of soft tissue tumors. And there were a crapload of them! Even a couple bone mets had cleared. Seems strange to me that I developed 2 new ones in my rib and spine. But they are being zapped with radiation this week and next.( of course I am getting scans prior to radiation, and before each treatment.) I may go for the Guiness book of world records for the most scans recieved by one person. Then again, I may just go for a Guiness. My side effects have been laziness interuppted by rounds of golf and frequent motorcycle rides. When initially meeting with my oncologist, she asked me, " Would you be happy if we weren't able to cure you but if we could keep you from getting worse." My answer was, "Hell yeah!" I was still working, running 3 miles every other day and weight training 4-5 days a week. With no pain. This summer the pain began from my new mets. I can now happily report that I am PAIN FREE once again.... How fortunate that pt. is able to manage flying in from the UK... I've been worrying about Paulas trips to Nashville from Atlanta.

    You are so sweet~
    Don't worry about my trips to Nashville. My husband and son are going with me this week, and probably the first couple of times, But after that I've already got at least 10 volunteers to take the trips with me! Great friends who will par-tay! We'll eat some good barbecue, check out the country folk at Opryland, and drive into the mountains and ooh and aah at the splendor of the leaves and the weather! I like to look at this as a ride at Disneyworld...strap myself and and woo hooo! I'm going for the gusto!

    Seriously, a 4 hour car trip every three weeks is a small price to pay for an opportunity to LIVE. I only pray that the side effects are as minimal as you say and I feel GOOD! But it is nice to know you worry about me ;)
  • foxhd
    foxhd Member Posts: 3,181 Member
    #12
    pjune127 said:

    You are so sweet~
    Don't worry about my trips to Nashville. My husband and son are going with me this week, and probably the first couple of times, But after that I've already got at least 10 volunteers to take the trips with me! Great friends who will par-tay! We'll eat some good barbecue, check out the country folk at Opryland, and drive into the mountains and ooh and aah at the splendor of the leaves and the weather! I like to look at this as a ride at Disneyworld...strap myself and and woo hooo! I'm going for the gusto!

    Seriously, a 4 hour car trip every three weeks is a small price to pay for an opportunity to LIVE. I only pray that the side effects are as minimal as you say and I feel GOOD! But it is nice to know you worry about me ;)

    attitude
    Thats the attitude we share. Nashville will offer a lot of fun. The Opry will be awesome. Just remember, side effects are nil for me. I ride back and forth in all good weather. I easily go alone. So you are right. Having family and friends making the trip will allow for making it very easy and enjoyable. I'm excited for you.

Discussion Boards