Mdx 1106/ sutent trial 6 week scan results

tacyarts
tacyarts Member Posts: 73
edited September 2012 in Kidney Cancer #1
FINALLY, some positive news!!! My scans were yesterday and my lung mets have decreased in size. I am so excited, it wasn't a remarkable decrease but I will sure tale it. My 1 mass was 4.7 x 3.6 and is now 3.9 x 3.1 and the other major one was 2.1 x 3.6 and now is 2.1 x 3.3 and my leg tumor was unchanged. God has been good to me but not near out of woods yet, so keep up the prayers .
«13

Comments

  • angec
    angec Member Posts: 924
    GREAT NEWS!
    That is totally fantastic! So glad to hear the wonderful news!! This MDX sure looks like it is a silver bullet! Hopefully it will be available to everyone soon! keep up the good work, while we keep the prayers coming.. go celebrate!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    angec said:

    GREAT NEWS!
    That is totally fantastic! So glad to hear the wonderful news!! This MDX sure looks like it is a silver bullet! Hopefully it will be available to everyone soon! keep up the good work, while we keep the prayers coming.. go celebrate!

    GREAT NEWS
    indeed, for you and the whole community. The shrinkages look mighty impressive for such a relatively short space of time. I can only echo what Angie has said.
  • foxhd
    foxhd Member Posts: 3,181

    GREAT NEWS
    indeed, for you and the whole community. The shrinkages look mighty impressive for such a relatively short space of time. I can only echo what Angie has said.

    MDX
    I love it, love it, love it!!!!!!!!!!!!! We are onto something special. Keep making progress tacyarts. My next results will be posted on weds. I begin to worry that it has been too easy. But,seeing you guys improve makes me appreciate that we are very fortunate people. Let's keep this train running!
  • alice124
    alice124 Member Posts: 896 Member
    Trial Scan
    Tac,

    That's great news. I've been holding my breath waiting for your post as I knew your scan was this past week, but also knew your leg continued to give you considerable pain. One of the other MDX patients mentioned to John and me at one point that--for the first scan--they are looking for stability. It's obvious you've joined Fox and John at the front of the class as the STABLE prediction is simply skipped. (See this Paula!) Let us know when you receive the BMS trial (radiologists RECIST) report that note the percentage reductions overall.

    Keep up the good work. You'll be tossing those crutches in no time.

    YES!
  • pjune127
    pjune127 Member Posts: 127
    alice124 said:

    Trial Scan
    Tac,

    That's great news. I've been holding my breath waiting for your post as I knew your scan was this past week, but also knew your leg continued to give you considerable pain. One of the other MDX patients mentioned to John and me at one point that--for the first scan--they are looking for stability. It's obvious you've joined Fox and John at the front of the class as the STABLE prediction is simply skipped. (See this Paula!) Let us know when you receive the BMS trial (radiologists RECIST) report that note the percentage reductions overall.

    Keep up the good work. You'll be tossing those crutches in no time.

    YES!

    I'm listening!
    This is FABULOUS news and just the thing I needed to make this day brighter! I am so encouraged and so ready to get this thing going. My eggs are in this basket....I want to join the ranks!

    Love, Paula
  • ClaraW
    ClaraW Member Posts: 64
    pjune127 said:

    I'm listening!
    This is FABULOUS news and just the thing I needed to make this day brighter! I am so encouraged and so ready to get this thing going. My eggs are in this basket....I want to join the ranks!

    Love, Paula

    fantastic news!
    Fabulous news indeed!
  • tacyarts
    tacyarts Member Posts: 73
    ClaraW said:

    fantastic news!
    Fabulous news indeed!

    Mental!!
    It's amazing the better your mental attitude can be with a little positive news during this fight!! I had positive thoughts everytime I heard of decreased disease for others in our little group, and now I hope I have lifted the spirits of a few of you. I appreciate all of the support that I get from the group and hope that all reading this gets a little celebrating news coming their way soon.
  • angec
    angec Member Posts: 924
    tacyarts said:

    Mental!!
    It's amazing the better your mental attitude can be with a little positive news during this fight!! I had positive thoughts everytime I heard of decreased disease for others in our little group, and now I hope I have lifted the spirits of a few of you. I appreciate all of the support that I get from the group and hope that all reading this gets a little celebrating news coming their way soon.

    Breathing
    Tacyarts do you mind If I ask you a question? Mom who is 80' has two small mets to her lungs. One is 1 cm and the other just a bit over a cm. do you have any problem breathing? She gets very out of breath when she walks. The doctor told her it can't be her lungs because the mets are small but I am not so sure. She also has a cough at times. The allergy season has been brutal and we are all coughing in NY.

    I tried to post earlier and was frozen for a while so if this is a double post please forgive me. Still happy about your great news!
  • tacyarts
    tacyarts Member Posts: 73
    angec said:

    Breathing
    Tacyarts do you mind If I ask you a question? Mom who is 80' has two small mets to her lungs. One is 1 cm and the other just a bit over a cm. do you have any problem breathing? She gets very out of breath when she walks. The doctor told her it can't be her lungs because the mets are small but I am not so sure. She also has a cough at times. The allergy season has been brutal and we are all coughing in NY.

    I tried to post earlier and was frozen for a while so if this is a double post please forgive me. Still happy about your great news!

    Breathing
    My breathing has been fine, I've been out of breath a little because I am a big guy and on crutches now for over 3 months
    The extra effort that it takes to crutch around and I am even more outa shape because of my lack of mobility. I can feel the one biggest tumor at times but as of now I have no probs at all breathing.
  • angec
    angec Member Posts: 924
    tacyarts said:

    Breathing
    My breathing has been fine, I've been out of breath a little because I am a big guy and on crutches now for over 3 months
    The extra effort that it takes to crutch around and I am even more outa shape because of my lack of mobility. I can feel the one biggest tumor at times but as of now I have no probs at all breathing.

    Glad to hear it..
    Totally understandable.. praying for your full recovery!! Thanks for taking time to answer. Enjoy the Sunday!!
  • one putt
    one putt Member Posts: 72
    angec said:

    Glad to hear it..
    Totally understandable.. praying for your full recovery!! Thanks for taking time to answer. Enjoy the Sunday!!

    lung mets
    angec
    In response to your question about lung mets and your mother's cough,I was dealing with a cough prior to beginning my MDX trial. I remember asking my doctor if the mets were related to my cough.He also saw no relation between the two,but it's hard to believe they're not related.Once my mets began to shrink my cough disappeared.Hope this helps.
  • foxhd
    foxhd Member Posts: 3,181
    one putt said:

    lung mets
    angec
    In response to your question about lung mets and your mother's cough,I was dealing with a cough prior to beginning my MDX trial. I remember asking my doctor if the mets were related to my cough.He also saw no relation between the two,but it's hard to believe they're not related.Once my mets began to shrink my cough disappeared.Hope this helps.

    lung mets
    On the other hand, When I had a dozen mets in my lungs, I was still jogging fairly well with no more SOB then before there were mets. Go figure. My doctors just shook their heads.
  • Max Power
    Max Power Member Posts: 60
    one putt said:

    lung mets
    angec
    In response to your question about lung mets and your mother's cough,I was dealing with a cough prior to beginning my MDX trial. I remember asking my doctor if the mets were related to my cough.He also saw no relation between the two,but it's hard to believe they're not related.Once my mets began to shrink my cough disappeared.Hope this helps.

    lung mets
    Want to add my congrats to your success. I'll bet you wonder as I do which has the more effect, MDX or Sutent.

    As to lung mets, mine never interfered with breathing but one does encroach on one of my lesser windpipes and causes coughing, especially when allergy season causes post-nasal-drip. I've had two cauterizing bronchoscopys when it encroached enough to cause bleeding.

    I think it is not obvious when a lesion encroaches, so they may need to look twice at a scan.
  • angec
    angec Member Posts: 924
    Max Power said:

    lung mets
    Want to add my congrats to your success. I'll bet you wonder as I do which has the more effect, MDX or Sutent.

    As to lung mets, mine never interfered with breathing but one does encroach on one of my lesser windpipes and causes coughing, especially when allergy season causes post-nasal-drip. I've had two cauterizing bronchoscopys when it encroached enough to cause bleeding.

    I think it is not obvious when a lesion encroaches, so they may need to look twice at a scan.

    Thanks one putt and Max
    Thanks one putt and Max power and Fox! All of this is helpful. I am taking her to a lung specialist on the 16th. Try to get some answers for her. She used to be asthmatic years ago, but since her surgery she has had this issue. The cough does get worse with allergies, but the problem is her breathing whenever she moves around. I wonder if it is being 80 or something other. I will see what the lung doctor says and update everyone. Thanks for all the details, it helps a lot to learn from you all!
  • tacyarts
    tacyarts Member Posts: 73
    Max Power said:

    lung mets
    Want to add my congrats to your success. I'll bet you wonder as I do which has the more effect, MDX or Sutent.

    As to lung mets, mine never interfered with breathing but one does encroach on one of my lesser windpipes and causes coughing, especially when allergy season causes post-nasal-drip. I've had two cauterizing bronchoscopys when it encroached enough to cause bleeding.

    I think it is not obvious when a lesion encroaches, so they may need to look twice at a scan.

    Sutent/ mdx
    It drives me crazy to know which that is helping or maybe both!! I'm just thankful that at least one of them is helping. It's so encouraging.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    tacyarts said:

    Sutent/ mdx
    It drives me crazy to know which that is helping or maybe both!! I'm just thankful that at least one of them is helping. It's so encouraging.

    Sutent and mdx
    It sure is. What dosages are you on at the present time? When can you throw away the crutches?
  • tacyarts
    tacyarts Member Posts: 73

    Sutent and mdx
    It sure is. What dosages are you on at the present time? When can you throw away the crutches?

    Doses
    My present doses are 50 mg sutent daily for four weeks on and two off. I'm pretty sure that the mdx Is 10 mg per session every 3 weeks. As for my crutches, until my tumer dies and goes away, they don't think that the bone will ever grow back. I can't have anything done to it because of trial eligibility. Kinda puts me between a rock and a hard place. I've been outa wort for 3 months now and don't see any fast solution.
  • tacyarts
    tacyarts Member Posts: 73

    Sutent and mdx
    It sure is. What dosages are you on at the present time? When can you throw away the crutches?

    Doses
    My present doses are 50 mg sutent daily for four weeks on and two off. I'm pretty sure that the mdx Is 10 mg per session every 3 weeks. As for my crutches, until my tumer dies and goes away, they don't think that the bone will ever grow back. I can't have anything done to it because of trial eligibility. Kinda puts me between a rock and a hard place. I've been outa work for 3 months now and don't see any fast solution.
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    Doses
    My present doses are 50 mg sutent daily for four weeks on and two off. I'm pretty sure that the mdx Is 10 mg per session every 3 weeks. As for my crutches, until my tumer dies and goes away, they don't think that the bone will ever grow back. I can't have anything done to it because of trial eligibility. Kinda puts me between a rock and a hard place. I've been outa work for 3 months now and don't see any fast solution.

    Dose
    Hi Tacyarts,

    You might want to check that mdx dosage. If yo're on the same trial (but with Sutent arm) Phase I Dose Escalation Phase that John is on, it's probably 2 mg BMS936558. I believe they have expanded the trial since he started and may have boosted the dose up to 3 mg, but--to my knowledge (which is indeed limited)--the only 10 mg MDX dosage is the MDX (BMS936558) only trial, like Fox is on.


    Is Monica your trial nurse? Do you have her email? If not, let me know and I'll forward to you. She's great about responding quickly.

    Hope that leg is improving with each day. . .
  • Max Power
    Max Power Member Posts: 60
    alice124 said:

    Dose
    Hi Tacyarts,

    You might want to check that mdx dosage. If yo're on the same trial (but with Sutent arm) Phase I Dose Escalation Phase that John is on, it's probably 2 mg BMS936558. I believe they have expanded the trial since he started and may have boosted the dose up to 3 mg, but--to my knowledge (which is indeed limited)--the only 10 mg MDX dosage is the MDX (BMS936558) only trial, like Fox is on.


    Is Monica your trial nurse? Do you have her email? If not, let me know and I'll forward to you. She's great about responding quickly.

    Hope that leg is improving with each day. . .

    clinical trials near you
    Here's a site which eveyone should have (sorry but the link is specific to my search):

    http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=8756554