Mdx 1106/ sutent trial 6 week scan results
Comments
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trial report - percentage reductionalice124 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!
Tac,
Was just wondering if you received the trial report yet that actually assigns an overall reduction percentage?
Hope the Sutent/MDX has started kicking in on that leg.0 -
Percentagealice124 said:trial report - percentage reduction
Tac,
Was just wondering if you received the trial report yet that actually assigns an overall reduction percentage?
Hope the Sutent/MDX has started kicking in on that leg.
Am I supposed to get something else, they told my the size reduction by cm and I figured the percentage myself and it looked like 20% in the biggest one in my lung, the other biggest one didn't shrink as much/ maybe 12% but they where my calculations. I kinda figured that they would get me the %'s but just to get the numbers was like pullin teeth. Monica and dr hammers were on vacation and it seemed like it was xtra hard to get results.0 -
percentagetacyarts said:Percentage
Am I supposed to get something else, they told my the size reduction by cm and I figured the percentage myself and it looked like 20% in the biggest one in my lung, the other biggest one didn't shrink as much/ maybe 12% but they where my calculations. I kinda figured that they would get me the %'s but just to get the numbers was like pullin teeth. Monica and dr hammers were on vacation and it seemed like it was xtra hard to get results.
Yes, after the reading of the initial scan on the day or day after you're scanned, it goes back to the radiologists to prepare another report as required for the BMS trial. It will indicate your entire tumor burden percentage and the overall percentage of reduction. It can sometimes take up to two weeks following the scan, but sometimes you get lucky and get it within days. I think Monica told me they are run either every two weeks or ten days and where you are in that cycle determine when you will receive.
Since Monica has been on vacation, I'd give her a call. It doesn't seem much happens in her absence. She's a jewel. Let us know.0 -
Non clear cell trialTexas_wedge said:Trials
Thanks Alice - who knows whether I might have to take you up on that offer! I guess I'll know a bit more come Friday.
Hey Tex,
Re: trials out there, I'm in one for non clear cell RCC at Memorial Sloan Kettering in NYC. First CT 8 wks out was promising. Of three growths, one decreased in size, one remained stable and one "almost resolved itself." Avastin & Afinitor. Need to get an Avastin infusion every two weeks, pop an Afinitor pill each day. Minimal side effects so far. I realize you're in the UK but you might want to check it out when reviewing US options.0 -
Non clear cell trialTexas_wedge said:Trials
Thanks Alice - who knows whether I might have to take you up on that offer! I guess I'll know a bit more come Friday.
Hey Tex,
Re: trials out there, I'm in one for non clear cell RCC at Memorial Sloan Kettering in NYC. First CT 8 wks out was promising. Of three growths, one decreased in size, one remained stable and one "almost resolved itself." Avastin & Afinitor. Need to get an Avastin infusion every two weeks, pop an Afinitor pill each day. Minimal side effects so far. I realize you're in the UK but you might want to check it out when reviewing US options.0 -
Non clear cell trialTexas_wedge said:Trials
Thanks Alice - who knows whether I might have to take you up on that offer! I guess I'll know a bit more come Friday.
Hey Tex,
Re: trials out there, I'm in one for non clear cell RCC at Memorial Sloan Kettering in NYC. First CT 8 wks out was promising. Of three growths, one decreased in size, one remained stable and one "almost resolved itself." Avastin & Afinitor. Need to get an Avastin infusion every two weeks, pop an Afinitor pill each day. Minimal side effects so far. I realize you're in the UK but you might want to check it out when reviewing US options.0 -
Questions for I am alive!I am alive said:Non clear cell trial
Hey Tex,
Re: trials out there, I'm in one for non clear cell RCC at Memorial Sloan Kettering in NYC. First CT 8 wks out was promising. Of three growths, one decreased in size, one remained stable and one "almost resolved itself." Avastin & Afinitor. Need to get an Avastin infusion every two weeks, pop an Afinitor pill each day. Minimal side effects so far. I realize you're in the UK but you might want to check it out when reviewing US options.
Hello, are you treating with any special RCC docs at Sloans? My mom 80 has RCC, we live in Bklyn and I am wanting to take her to Sloans but want an RCC specialist. Can you tell me about the side affects thus far? What was the criteria for the trials? I thought those two drugs were already approved. Glad you are doing better! Wishing you the best!
Are these drugs considered to be chemo?0 -
Hey there 007Texas_wedge said:Batman
Mike, I usually prefer to hang in the shadows but after persuading Judy to post some pics of Declan (and especially after her challenging me to post a pic myself) I felt I ought to come out into the sunshine and Carnoustie seemed the appropriate place to do that.
The way to find my pics (if you must!) is to click on my moniker (Texas_wedge). That will take you to my profile page, where, next to the tab "about me" is a tab labelled "expressions" where you'll find a few snaps I've taken with my iPhone (plus one taken by a fellow student 50 years ago showing what colour my hair used to be!!).
Too few of us utilise the full richness of the ACS site and hardly anyone here seems to have posted pics, which is why I felt well justified in not doing so. However, now I've shown the way, perhaps we can dragoon a few more members to post photos etc.
If you want a treat, go to Judy's page (sunlover_56) and look at the great pics there - a beautiful one of her with Declan, which looks like a lovely mother and child portrait! The lions one is also delightful and represents the fun, mildly risqué side of so many of our friends here.
Just to let you know ol Roger Moore and Sean Connery both have nothin on ya! that being you 00-Texas,heck even that new guy Daniel Craig lacks that ditinguished look you possess,oh and by the way i cant wait for this friday to arrive for your oncologists appointment so you can get the ball rolling on your next course of treatment.0 -
Hey there 007Texas_wedge said:Batman
Mike, I usually prefer to hang in the shadows but after persuading Judy to post some pics of Declan (and especially after her challenging me to post a pic myself) I felt I ought to come out into the sunshine and Carnoustie seemed the appropriate place to do that.
The way to find my pics (if you must!) is to click on my moniker (Texas_wedge). That will take you to my profile page, where, next to the tab "about me" is a tab labelled "expressions" where you'll find a few snaps I've taken with my iPhone (plus one taken by a fellow student 50 years ago showing what colour my hair used to be!!).
Too few of us utilise the full richness of the ACS site and hardly anyone here seems to have posted pics, which is why I felt well justified in not doing so. However, now I've shown the way, perhaps we can dragoon a few more members to post photos etc.
If you want a treat, go to Judy's page (sunlover_56) and look at the great pics there - a beautiful one of her with Declan, which looks like a lovely mother and child portrait! The lions one is also delightful and represents the fun, mildly risqué side of so many of our friends here.
Just to let you know ol Roger Moore and Sean Connery both have nothin on ya! that being you 00-Texas,heck even that new guy Daniel Craig lacks that ditinguished look you possess,oh and by the way i cant wait for this friday to arrive for your oncologists appointment so you can get the ball rolling on your next course of treatment.0 -
Of course I'm wrongalice124 said:percentage
Yes, after the reading of the initial scan on the day or day after you're scanned, it goes back to the radiologists to prepare another report as required for the BMS trial. It will indicate your entire tumor burden percentage and the overall percentage of reduction. It can sometimes take up to two weeks following the scan, but sometimes you get lucky and get it within days. I think Monica told me they are run either every two weeks or ten days and where you are in that cycle determine when you will receive.
Since Monica has been on vacation, I'd give her a call. It doesn't seem much happens in her absence. She's a jewel. Let us know.
I emailed Monica and my dosage is 2mg/ kg of mdx 1106 per dose. The %'s of shrinkages are not finished yet, Monica said that they are taking up to 2 weeks to get it done. She also got me path. Reports, I have sarcomatoid cancer (furhman grade 4) and original tumor was 7.3 cm.0 -
Of course I'm wrongalice124 said:percentage
Yes, after the reading of the initial scan on the day or day after you're scanned, it goes back to the radiologists to prepare another report as required for the BMS trial. It will indicate your entire tumor burden percentage and the overall percentage of reduction. It can sometimes take up to two weeks following the scan, but sometimes you get lucky and get it within days. I think Monica told me they are run either every two weeks or ten days and where you are in that cycle determine when you will receive.
Since Monica has been on vacation, I'd give her a call. It doesn't seem much happens in her absence. She's a jewel. Let us know.
I emailed Monica and my dosage is 2mg/ kg of mdx 1106 per dose. The %'s of shrinkages are not finished yet, Monica said that they are taking up to 2 weeks to get it done. She also got me path. Reports, I have sarcomatoid cancer (furhman grade 4) and original tumor was 7.3 cm.0 -
dosagetacyarts said:Of course I'm wrong
I emailed Monica and my dosage is 2mg/ kg of mdx 1106 per dose. The %'s of shrinkages are not finished yet, Monica said that they are taking up to 2 weeks to get it done. She also got me path. Reports, I have sarcomatoid cancer (furhman grade 4) and original tumor was 7.3 cm.
It's easy to make mistakes with all the medical terminology floating around, particularly when you're participating in a trial. Did your path report say sarcomatoid cancer or sarcomatoid features?
For example, John has on his pathological report: Histological type--clear cell (conventional)
renal cell carcinoma. Then under Histologic Grade: Fuhrman Grade 4 with focal sarcomatoid features. His tumor also was 7 cm.0 -
Unalloyed delight (well, almost)Limelife50 said:Hey there 007
Just to let you know ol Roger Moore and Sean Connery both have nothin on ya! that being you 00-Texas,heck even that new guy Daniel Craig lacks that ditinguished look you possess,oh and by the way i cant wait for this friday to arrive for your oncologists appointment so you can get the ball rolling on your next course of treatment.
Just after I discover I've grown up in the wrong country (ladies existing in the States who don't think I'm as ugly as I do) I find I chose the wrong profession and should have been a secret agent (once looked, briefly, as if that could happen).Thanks Mike, for that notion and for the good wishes for Friday.
Now to the source of delight. Yesterday we played the Championship Course at Carnoustie on a glorious sunny day (but cool - had to get hard hoar frost off the screen to get there). It was still partly as set up for the Dunhill, with only some of the stands etc dismantled. So, I sneaked on to some of the Championship tees and played from the very back, where we never get to play from in the normal course of affairs. [Like Oscar Wilde said - I can resist anything except temptation.]
The par 4 fifth hole was one of them. Occasionally we walk back onto the Champ tees to feel how different the hole is as played by the pros. This one lengthens to 411 yards, dog-legs and has an intimidating first shot with much of the hole obscured by gorse bushes to the right front of the tee. I asked my playing partner to video me driving from that tee and I hit a cracking drive.
I drove just under 270 yards on to the right side of the fairway; with very cold and moist, heavy air, playing to a green that slopes steeply up from front to back, I took an 11 wood and stopped my ball a few feet past the flag; this left a downhill 12 foot putt with a small left to right break and I sleeved the putt for a birdie 3 FROM THE CHAMPIONSHIP TEE!
The only disappointment was to find that my pal had screwed up the video and only got me standing watching my ball after I'd got my drive away. Still, if I should have to give up
playing golf soon, this will be a hole to remember in a way few non-golfers could begin to understand. Also, he filmed me on one or two other tees. I'm going to try to upload one of those swings to my expressions page so that some expert can tell me how to rectify the major power leak my Wife has identified in my swing.0 -
Alice it actually says sarcomatoid renal cell carcinoma with a clear cell component.alice124 said:dosage
It's easy to make mistakes with all the medical terminology floating around, particularly when you're participating in a trial. Did your path report say sarcomatoid cancer or sarcomatoid features?
For example, John has on his pathological report: Histological type--clear cell (conventional)
renal cell carcinoma. Then under Histologic Grade: Fuhrman Grade 4 with focal sarcomatoid features. His tumor also was 7 cm.0 -
Birdie 3!!Texas_wedge said:Unalloyed delight (well, almost)
Just after I discover I've grown up in the wrong country (ladies existing in the States who don't think I'm as ugly as I do) I find I chose the wrong profession and should have been a secret agent (once looked, briefly, as if that could happen).Thanks Mike, for that notion and for the good wishes for Friday.
Now to the source of delight. Yesterday we played the Championship Course at Carnoustie on a glorious sunny day (but cool - had to get hard hoar frost off the screen to get there). It was still partly as set up for the Dunhill, with only some of the stands etc dismantled. So, I sneaked on to some of the Championship tees and played from the very back, where we never get to play from in the normal course of affairs. [Like Oscar Wilde said - I can resist anything except temptation.]
The par 4 fifth hole was one of them. Occasionally we walk back onto the Champ tees to feel how different the hole is as played by the pros. This one lengthens to 411 yards, dog-legs and has an intimidating first shot with much of the hole obscured by gorse bushes to the right front of the tee. I asked my playing partner to video me driving from that tee and I hit a cracking drive.
I drove just under 270 yards on to the right side of the fairway; with very cold and moist, heavy air, playing to a green that slopes steeply up from front to back, I took an 11 wood and stopped my ball a few feet past the flag; this left a downhill 12 foot putt with a small left to right break and I sleeved the putt for a birdie 3 FROM THE CHAMPIONSHIP TEE!
The only disappointment was to find that my pal had screwed up the video and only got me standing watching my ball after I'd got my drive away. Still, if I should have to give up
playing golf soon, this will be a hole to remember in a way few non-golfers could begin to understand. Also, he filmed me on one or two other tees. I'm going to try to upload one of those swings to my expressions page so that some expert can tell me how to rectify the major power leak my Wife has identified in my swing.
Wow! A Birdie 3? Way to go TW... I would definitely fire that pal of yours!
But that sounds like an awesome game! We are looking forward to the upload of the swings. Thankfully you have your wife there, otherwise who would be brave enough to point out your weakness? I seriously doubt that you will have to give up golf at all. I am hearing that Votrient works well for sacromatoid (spelling?). At least that is what the doctor told me. It also works well for lung tumors and lymph nodes. They say it can also be used long term as long as there are tolerable side affects. I have a feeling that you will be needing to train a new cameraman and pronto! Unless it gets too cold and the green is covered by white snow. By the way, i read that you live on a golf course and you picked up about 60 balls the other day. I used to buy those on ebay for an old friend. You can make a nice penny for them on ebay. Especially if they are used by some famous golfers.
About your comments on living in the wrong country. Surely you don't think you are bad looking. I thought you to be quite handsome, and I had my bi-focals on!!
Praying all goes well on Friday, please keep us posted. Mom says hello!0 -
Sarcomatoidtacyarts said:Alice it actually says sarcomatoid renal cell carcinoma with a clear cell component.
The aggressive nature of sarcomatoid makes it a word we don't like to hear, but on the positive front, you've had reduction. Though it's hard, don't get discouraged. You've got plenty of company here with Nancy (Nana Lou), Tex, John, and many others with sarcomatoid features.
Under the sarcomatoid thread, Tex has a lot of reference material you may want to read. The company you've been allianced with through this diagnosis represents some of the Board's heaviest hitters so you're in excellent company. And those of us not directly in the fight have your back. Keep fighting; you're not alone. Let us know what those reduction numbers look like when the percentages arrive.
Hang in there TAC!0 -
Avastin/Affinitor trialI am alive said:Non clear cell trial
Hey Tex,
Re: trials out there, I'm in one for non clear cell RCC at Memorial Sloan Kettering in NYC. First CT 8 wks out was promising. Of three growths, one decreased in size, one remained stable and one "almost resolved itself." Avastin & Afinitor. Need to get an Avastin infusion every two weeks, pop an Afinitor pill each day. Minimal side effects so far. I realize you're in the UK but you might want to check it out when reviewing US options.
I am alive,
Yes! Your posting almost was lost to me. Maybe a new thread with your next report so we can all hoop and hollar with progress??? Sure many are interested.
Again, really happy; keep up the good work!0 -
Wrong infoalice124 said:Sarcomatoid
The aggressive nature of sarcomatoid makes it a word we don't like to hear, but on the positive front, you've had reduction. Though it's hard, don't get discouraged. You've got plenty of company here with Nancy (Nana Lou), Tex, John, and many others with sarcomatoid features.
Under the sarcomatoid thread, Tex has a lot of reference material you may want to read. The company you've been allianced with through this diagnosis represents some of the Board's heaviest hitters so you're in excellent company. And those of us not directly in the fight have your back. Keep fighting; you're not alone. Let us know what those reduction numbers look like when the percentages arrive.
Hang in there TAC!
Monica had told me the wrong dosage on the mdx, she emailed me back and I actually get the 5 mg dose.0
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