BMS93558* Votrient trial (formerly MDX 1106) John's 12 week scan

alice124
alice124 Member Posts: 896 Member
in Kidney Cancer #1
I went with John to his doctor’s appointment yesterday and I brought up his thyroid/medication levels and questioned his need to stay on those meds. The oncologist agreed it was reasonable “to stop the medication for six weeks and see where we are at that time.” So John has one less drug to take for now.

He also had a CT scan. As most of you know, John is on the Votrient/BMS 936558 (MDX 1106) trial and his previous scan on 6/20/12 showed a 31% reduction in tumor burden. It appears that his improvement is continuing though I don’t have a percentage of reduction yet. The percentage number comes days after the scan from the clinical trial sponsors. I’ll post that when it comes.

Two of the impressions are noted below:
1)Interval decrease in multiple pulmonary nodules with some nodules remaining unchanged, no new nodules.
2)Interval decrease in destructive metastatic lesions of the left ilium and right glenoid.

One other impression caused us some concern, though his doctor isn’t too worried about it. Said it could be side effect of medication and something we will watch. Jeff (Medscan man) - any thoughts?

“4 mm focus of arterial enhancement in segment 6 of the liver which is hypodense on
venous imaging, indeterminate and minimally increased since prior examination”

Appreciate all your support.


_______________________________________________________
John’s History at Johns Hopkins:

10/14/11 – Diagnosed with Kidney cancer clear cell/grade 4/stage 4 – with sarcomatoid features and lung mets; also has soft tissue mass in shoulder area and pelvic area.

Symptoms: weight loss followed by cough
11/1/11 – Surgery for removal of right kidney (nephrectomy)

Treatments to date:
January & February 2012 -HDIL2 treatment/first round 14 doses/2nd round 10 doses;
(discontinued after February 2012 as scan did not merit continuation)

5/10/2012 – Began MDX1106/Votrient trial

6/20/2012 – CT scan showed 31% reduction in tumor burden

Comments

  • MedScanMan
    MedScanMan Member Posts: 107
    #2
    I wish
    Alice...I'd love to jump in here and help. This is way beyond me. When it comes to chemotherapy, follow up for nodules, consider me no more than a photographer. I can only wish you well and hope you kick the daylights out of this.

    Jeff
  • alice124
    alice124 Member Posts: 896 Member
    #3
    MedScanMan said:

    I wish
    Alice...I'd love to jump in here and help. This is way beyond me. When it comes to chemotherapy, follow up for nodules, consider me no more than a photographer. I can only wish you well and hope you kick the daylights out of this.

    Jeff

    Thanks for your good wishes. Thank you for becoming a CSN asset. As you can tell, you've been well received.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    alice124 said:

    Thanks for your good wishes. Thank you for becoming a CSN asset. As you can tell, you've been well received.

    That's wonderful
    Great news for John and you! I'm looking forward to my next scan. Results are on the22nd.
  • alice124
    alice124 Member Posts: 896 Member
    #5
    foxhd said:

    That's wonderful
    Great news for John and you! I'm looking forward to my next scan. Results are on the22nd.

    22nd on my calendar
    Hey Fox,

    Thank you for your nice words. I've been anxiously wondering when your new scan date is and I'm so glad you posted that date. So glad you continue to feel well and stay active.

    John and I think of you often. With summer here and Harleys abundant, John and I have gotten into the habit of seeing a harley--equipped with sunglasses, hairless head and hairy face as a fox sighting. We recently were going to dinner with another couple when here comes a fox-look-alike flying by on his harley when John said -- "there's a fox." You should have seen his buddy's face as he repeated "a fox?????"
  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    alice124 said:

    22nd on my calendar
    Hey Fox,

    Thank you for your nice words. I've been anxiously wondering when your new scan date is and I'm so glad you posted that date. So glad you continue to feel well and stay active.

    John and I think of you often. With summer here and Harleys abundant, John and I have gotten into the habit of seeing a harley--equipped with sunglasses, hairless head and hairy face as a fox sighting. We recently were going to dinner with another couple when here comes a fox-look-alike flying by on his harley when John said -- "there's a fox." You should have seen his buddy's face as he repeated "a fox?????"

    A Fox sighting?
    Funny stuff..... It's been a great year for riding. But it's already August. Now, I need to dig into some projects around the house...........Yesterday my energy was awesome. Spent about 4 hours doing yard work, another hour doing repairs at my MIL's. In the morning, I ran 3 miles and biked 5. Today, not so much. My blood pressure has been fluctuating for the last month but I think I have it in control now. Only issue is the back and rib pain. I really expect it to be better by the next scan. Also, I am creating a target date of January first to be ned. Last time , bone pain cleared up fast. I had to generally cut back on my exercise but should be full swing shortly.
  • alice124
    alice124 Member Posts: 896 Member
    #7
    foxhd said:

    A Fox sighting?
    Funny stuff..... It's been a great year for riding. But it's already August. Now, I need to dig into some projects around the house...........Yesterday my energy was awesome. Spent about 4 hours doing yard work, another hour doing repairs at my MIL's. In the morning, I ran 3 miles and biked 5. Today, not so much. My blood pressure has been fluctuating for the last month but I think I have it in control now. Only issue is the back and rib pain. I really expect it to be better by the next scan. Also, I am creating a target date of January first to be ned. Last time , bone pain cleared up fast. I had to generally cut back on my exercise but should be full swing shortly.

    Fox - January 1
    Fox,

    Great goal, and we'll be cheering you on.

    That was some day yesterday. I couldn't do that kind of work on a good day, and--to the best of my knowledge--I don't have cancer. You are a fighter.

    John continues to have pain with the shoulder mets but it's less severe. Two scans ago they noticed a fracture on the scan but they believe it's from the tumor pulling away from the bone (shrinkage) and his doctor is hopeful with the xgeva and mdx/votrient it will continue to improve. That bone pain is tough.

    A couple of quick questions. Do you take any vitamins/supplements or does the trial prohbit?

    Also, I know they stoppped the MDX when you had the respiratory infection (for which your doctor prescribed antibiotics and you prescribed a road trip--your poor wife! SMILE) Is that the only time since starting the trial you've been taken off the MDX?
  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    alice124 said:

    Fox - January 1
    Fox,

    Great goal, and we'll be cheering you on.

    That was some day yesterday. I couldn't do that kind of work on a good day, and--to the best of my knowledge--I don't have cancer. You are a fighter.

    John continues to have pain with the shoulder mets but it's less severe. Two scans ago they noticed a fracture on the scan but they believe it's from the tumor pulling away from the bone (shrinkage) and his doctor is hopeful with the xgeva and mdx/votrient it will continue to improve. That bone pain is tough.

    A couple of quick questions. Do you take any vitamins/supplements or does the trial prohbit?

    Also, I know they stoppped the MDX when you had the respiratory infection (for which your doctor prescribed antibiotics and you prescribed a road trip--your poor wife! SMILE) Is that the only time since starting the trial you've been taken off the MDX?

    Not really
    I take nothing beyond an adult multivitamin, fish oil, and glucosamine. Nothing I didn't do before. The dose that was skipped due to the chest infection was the only missed dose. I have just had my 12th infusion. I still hope the 6 week scans don't kill me.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #9
    foxhd said:

    Not really
    I take nothing beyond an adult multivitamin, fish oil, and glucosamine. Nothing I didn't do before. The dose that was skipped due to the chest infection was the only missed dose. I have just had my 12th infusion. I still hope the 6 week scans don't kill me.

    Future ned
    I reread my comment of having a Jan2013 goal for being NED. It's not what I meant and seems like a dumb statement. What I really meant to say was that at the rate of progress that I have been making, if I cont. on my same pace, I think that by Jan2013 I have a good chance of approaching NED.
  • alice124
    alice124 Member Posts: 896 Member
    #10
    foxhd said:

    Future ned
    I reread my comment of having a Jan2013 goal for being NED. It's not what I meant and seems like a dumb statement. What I really meant to say was that at the rate of progress that I have been making, if I cont. on my same pace, I think that by Jan2013 I have a good chance of approaching NED.

    NED
    Don't think it's dumb at all. You're the lead car in this race and January 2013 NED simply reflects continued optimism. But I agree continued progress won't be frowned upon either.


    Are you still on the 10 mg dose? I'm hoping to find out the rationale for the reduction in dosage on the consent form. I don't know if it's just not necessary--5 mg will do the same thing as 10 mg--or if it has had some toxic effects on some in trial.

    Personally, I'm amazed at how fast it seems to attack your pain. Of course, you're on 5x the dose as John. It's helped John, and we're thankful to have it available but I'm wondering if an increased dosage (possibly after the trial) might work even better. Questions never stop churning. . .
  • aldiyana
    aldiyana Member Posts: 16
    #11
    alice124 said:

    NED
    Don't think it's dumb at all. You're the lead car in this race and January 2013 NED simply reflects continued optimism. But I agree continued progress won't be frowned upon either.


    Are you still on the 10 mg dose? I'm hoping to find out the rationale for the reduction in dosage on the consent form. I don't know if it's just not necessary--5 mg will do the same thing as 10 mg--or if it has had some toxic effects on some in trial.

    Personally, I'm amazed at how fast it seems to attack your pain. Of course, you're on 5x the dose as John. It's helped John, and we're thankful to have it available but I'm wondering if an increased dosage (possibly after the trial) might work even better. Questions never stop churning. . .

    my husband was diagnosed
    my husband was diagnosed with collecting duct carcinoma on the kidney and it mets to his lungs...he will also be starting on votrient soon...they said that chemo wouldnt make much difference that the drug is the main thing...we are scared and praying to god that it will work hes only 27 and we have 2 little girls...

    how is your husband progress doing? would you say that votrient is a good drug?...

    keep safe and strong xoxo
  • alice124
    alice124 Member Posts: 896 Member
    #12
    BMS936558 (MDX 1106) Votrient Trial Report for John
    Just got the clinical trial report for John's latest scan and it shows an additional 11% reduction for an overall 42% baseline decrease!! We're thrilled it's moving in the right direction.
  • garym
    garym Member Posts: 1,647
    #13
    alice124 said:

    BMS936558 (MDX 1106) Votrient Trial Report for John
    Just got the clinical trial report for John's latest scan and it shows an additional 11% reduction for an overall 42% baseline decrease!! We're thrilled it's moving in the right direction.

    Fantastic...
    Alice,

    That is great news, I am so happy for you guys!!! We seem to be moving ever closer to that magic bullet thanks to those like John and fox for being willing to try and those that love, encourage, and care for them as they blaze the trail.

    God bless,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #14
    garym said:

    Fantastic...
    Alice,

    That is great news, I am so happy for you guys!!! We seem to be moving ever closer to that magic bullet thanks to those like John and fox for being willing to try and those that love, encourage, and care for them as they blaze the trail.

    God bless,

    Gary

    Damn,that's great!
    I better move over and get out of the way before I get run over. I'm going from poster boy to post it boy. You know, 3 square inches, doesn't stick too well. But you can't live without me!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    foxhd said:

    Damn,that's great!
    I better move over and get out of the way before I get run over. I'm going from poster boy to post it boy. You know, 3 square inches, doesn't stick too well. But you can't live without me!

    All kidding aside
    That is so fantastic! I'm thrilled! I had to call a friend to share my excitement.
  • pjune127
    pjune127 Member Posts: 127
    #16
    alice124 said:

    BMS936558 (MDX 1106) Votrient Trial Report for John
    Just got the clinical trial report for John's latest scan and it shows an additional 11% reduction for an overall 42% baseline decrease!! We're thrilled it's moving in the right direction.

    Wonderful News!
    Alice I am so happy to hear about John's progress. That is fantastic news for you! I am chugging along on Inlyta. Went to the doctor today, blood work was good, so he upped the dose to 7 mg 2X a day. The side effects have been minimal, but I gotta admit I am skeptical. Sometimes you just know when something is or isn't working. Returning for another blood test in 3 weeks, and then a scan. Keeping my fingers crossed. Been thinking about you and just wanted to let you know I am praying for John and everyone else here.
  • aditya_fighter
    aditya_fighter Member Posts: 20
    #17
    pjune127 said:

    Wonderful News!
    Alice I am so happy to hear about John's progress. That is fantastic news for you! I am chugging along on Inlyta. Went to the doctor today, blood work was good, so he upped the dose to 7 mg 2X a day. The side effects have been minimal, but I gotta admit I am skeptical. Sometimes you just know when something is or isn't working. Returning for another blood test in 3 weeks, and then a scan. Keeping my fingers crossed. Been thinking about you and just wanted to let you know I am praying for John and everyone else here.

    Good news
    Very happy to see the progress of John and Fox. I think MDX 1106 is giving good results. I am on Votrient 800mg OD. I will be at MD Anderson Houston from 2nd to 12th of Sept for a complete evaluation and pfurther treatment.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #18
    aditya_fighter said:

    Good news
    Very happy to see the progress of John and Fox. I think MDX 1106 is giving good results. I am on Votrient 800mg OD. I will be at MD Anderson Houston from 2nd to 12th of Sept for a complete evaluation and pfurther treatment.

    Good news
    Looking forward to hearing that you are doing as well as Fox and John. Doubtless you'll give us chapter and verse when you get your evaluation report. We do seem to be entering a new era in RCC treatment.

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