Trial in Nashville MPDL3280A (PDL)
In any event, I am glad to be home and must tell you all who prayed for me and thought about me that I felt all that energy. And that is what got me through the last few days. I want to be a survivor and I want to take all of you along with me! The support in this group is astounding and humbling. Thank you all.
Love, Paula XO
Comments
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Welcome home!
It's such a long strange journey that we're on. And yea, coming back home after these hospital visits is an exhilerating experience, isn't it? LOVE the everyday-ness of every day. You're gonna rock that PDL, Paula! I'm glad the first infusion wet well. Fingers crossed for the future. Glad to hear you can feel all that positivity coming your way from the wonderful folks on this board. Aren't we all lucky to have found each other? Keep smiling!0 -
Welcome Home
So glad your trip went as well as it did for you and that you tolorated the Meds well. One more super fighter on this board. Congrats.
Jeff0 -
Well done PaulaMedScanMan said:Welcome Home
So glad your trip went as well as it did for you and that you tolorated the Meds well. One more super fighter on this board. Congrats.
Jeff
No more than we expected of you - you're a winner. Just you show everyone that the new dose is the right one. I guess you'll stay in close touch with the trial team to monitor your experiences in the interval before the next infusion?
Being the only one on the trial there is fitting - you're special!
[P.S. your info is so useful. My Wife has just commented that she thinks we should try to find out whether I have the necessary marker.]0 -
garym said:
Could you hear my sigh of relief??
Hi Paula,
Great to hear from you and even better that all is well!! You are now elevated to Rock Star status right up there with fox and one putt (Alice's John), I pray your results will be at least equal to theirs.
Rock on,
Gary
:):):):):):):):):)My attempt at smiles! I bet the fever was due to your body going ape **** on all the invaders. It's alot for ones system especially at double dose. Maybe means it will work twice as fast. Maybe thats what they are thinking and hoping for. Is your next scan in 6 weeks? 0 -
foxhd said::):):):):):):):):)My attempt at smiles! I bet the fever was due to your body going ape **** on all the invaders. It's alot for ones system especially at double dose. Maybe means it will work twice as fast. Maybe thats what they are thinking and hoping for. Is your next scan in 6 weeks?
I go back on November 8th for labs and another infusion. The next time (the end of November), they will do scans again, before the treatment. So yes, scans are every 6 weeks for the first few months. I feel okay today, only a little wiped out, bu my immune system is in high gear! Watch out cancer!!!0 -
ATTA GIRL!!!pjune127 said:
I go back on November 8th for labs and another infusion. The next time (the end of November), they will do scans again, before the treatment. So yes, scans are every 6 weeks for the first few months. I feel okay today, only a little wiped out, bu my immune system is in high gear! Watch out cancer!!!
ATTA GIRL!!!0 -
followupTexas_wedge said:Well done Paula
No more than we expected of you - you're a winner. Just you show everyone that the new dose is the right one. I guess you'll stay in close touch with the trial team to monitor your experiences in the interval before the next infusion?
Being the only one on the trial there is fitting - you're special!
[P.S. your info is so useful. My Wife has just commented that she thinks we should try to find out whether I have the necessary marker.]
The nurses at Tennessee Oncology called me first thing this morning. I told them about the fever and they said it is totally expected and as long as tylenol relieves it and I show no other signs of infection, there is nothing to worry about. In fact, the fever is gone and I haven't had any tylenol since last night at midnight. They do want me to call if I have any questions, and of course I can get any emergency tended to by my local oncologist, but otherwise it was pretty much, "See ya in three weeks!" I say check into it T. I'd love to have your company.0 -
Questionspjune127 said:
I go back on November 8th for labs and another infusion. The next time (the end of November), they will do scans again, before the treatment. So yes, scans are every 6 weeks for the first few months. I feel okay today, only a little wiped out, bu my immune system is in high gear! Watch out cancer!!!
Paula - I'm confused. Is there a difference between PD-1 and PDL-1?
Your receiving the 20mg was quite an eye-opener. As I think I reported earlier, Hopkins reduced the maximum dosage of MDX-1106/BMS936558 to 5 mg for John's and Tacyart's trials (John with Votrient/Tacyarts with Sutent). So, if I'm getting this, Hopkins decision to lower the maximum dose to 5mg for those in the PD-1 trials combined with Votrient or Sutent had to be more about combining the MDX/BMS with the Votrient or Sutent, obviously not concerns about MDX/BMS alone. Does that sound right to you?0 -
Questionsalice124 said:Questions
Paula - I'm confused. Is there a difference between PD-1 and PDL-1?
Your receiving the 20mg was quite an eye-opener. As I think I reported earlier, Hopkins reduced the maximum dosage of MDX-1106/BMS936558 to 5 mg for John's and Tacyart's trials (John with Votrient/Tacyarts with Sutent). So, if I'm getting this, Hopkins decision to lower the maximum dose to 5mg for those in the PD-1 trials combined with Votrient or Sutent had to be more about combining the MDX/BMS with the Votrient or Sutent, obviously not concerns about MDX/BMS alone. Does that sound right to you?
Alice, it's actually quite a bit more complicated than that. (Funnily enough I was about to jot a few points about this and related issues, which I'll do later, after addressing my own decision treatment issues.)
PDL-1 is different. They are, in a sense, complementary or, perhaps, better, corollaries. The L stands for ligand which is a molecule which attaches to a target molecule. (Modern computer-asisted drug design involves speculative computer modelling of properties of materials, making educated guesses as to the consequences of such fits. It's highly relevant in current cancer drug research and design.)
As I understand it (subject, as ever, to correction by those more knowledgeable) the various new immunomodulatory agents are using one of two methods of attack - either attaching to the receptors on cancer cells or to those on our immune system's cells that the cancer is managing to hide from. Hence there are two different categories of drugs at work here and Fox's and Paula's are from opposite camps.
Also, there is rapid and increasingly competitive development going on between the various companies comprising Big Pharma. The drug that Fox and John are on (as to which, more anon) is already in the second generation of these and the one Paula is now on is part of the third generation and from a different company from BMS (and its predecessor in the development of MDX-1106, Medarex), Genentech.
Consequently (among several other reasons I'll leave aside just now) it's not possible to draw the posological parallels you've made and, beyond that, there are two stages in the trial phase that Paula's in, with different dosage protocols. So, you see, you shouldn't be concerned about the difference in apparent dosage decisions as between John's and Paula's regimens. It would be like comparing apples with orang utangs!0 -
whewTexas_wedge said:Questions
Alice, it's actually quite a bit more complicated than that. (Funnily enough I was about to jot a few points about this and related issues, which I'll do later, after addressing my own decision treatment issues.)
PDL-1 is different. They are, in a sense, complementary or, perhaps, better, corollaries. The L stands for ligand which is a molecule which attaches to a target molecule. (Modern computer-asisted drug design involves speculative computer modelling of properties of materials, making educated guesses as to the consequences of such fits. It's highly relevant in current cancer drug research and design.)
As I understand it (subject, as ever, to correction by those more knowledgeable) the various new immunomodulatory agents are using one of two methods of attack - either attaching to the receptors on cancer cells or to those on our immune system's cells that the cancer is managing to hide from. Hence there are two different categories of drugs at work here and Fox's and Paula's are from opposite camps.
Also, there is rapid and increasingly competitive development going on between the various companies comprising Big Pharma. The drug that Fox and John are on (as to which, more anon) is already in the second generation of these and the one Paula is now on is part of the third generation and from a different company from BMS (and its predecessor in the development of MDX-1106, Medarex), Genentech.
Consequently (among several other reasons I'll leave aside just now) it's not possible to draw the posological parallels you've made and, beyond that, there are two stages in the trial phase that Paula's in, with different dosage protocols. So, you see, you shouldn't be concerned about the difference in apparent dosage decisions as between John's and Paula's regimens. It would be like comparing apples with orang utangs!
TW, I sure am glad YOU answered that. The best I can remember is picture the research nurse drew for me. She told me the drug latches on to my t cells and is able to "unlock" the invisible barrier the cancer cell has around it protecting it from my immune system. I actually didn't even realize these were not the same drugs. You are a smart man!
As an aside, I feel pretty well today. Just thanking God for another beautiful day here!
Paula xo0 -
questionsTexas_wedge said:Questions
Alice, it's actually quite a bit more complicated than that. (Funnily enough I was about to jot a few points about this and related issues, which I'll do later, after addressing my own decision treatment issues.)
PDL-1 is different. They are, in a sense, complementary or, perhaps, better, corollaries. The L stands for ligand which is a molecule which attaches to a target molecule. (Modern computer-asisted drug design involves speculative computer modelling of properties of materials, making educated guesses as to the consequences of such fits. It's highly relevant in current cancer drug research and design.)
As I understand it (subject, as ever, to correction by those more knowledgeable) the various new immunomodulatory agents are using one of two methods of attack - either attaching to the receptors on cancer cells or to those on our immune system's cells that the cancer is managing to hide from. Hence there are two different categories of drugs at work here and Fox's and Paula's are from opposite camps.
Also, there is rapid and increasingly competitive development going on between the various companies comprising Big Pharma. The drug that Fox and John are on (as to which, more anon) is already in the second generation of these and the one Paula is now on is part of the third generation and from a different company from BMS (and its predecessor in the development of MDX-1106, Medarex), Genentech.
Consequently (among several other reasons I'll leave aside just now) it's not possible to draw the posological parallels you've made and, beyond that, there are two stages in the trial phase that Paula's in, with different dosage protocols. So, you see, you shouldn't be concerned about the difference in apparent dosage decisions as between John's and Paula's regimens. It would be like comparing apples with orang utangs!
Thank you TW for providing the fruit of your uncompromising research. Agree with Paula, you are a very smart man. And we're all grateful to have you here.0 -
Questions (continuation)Texas_wedge said:Questions
Alice, it's actually quite a bit more complicated than that. (Funnily enough I was about to jot a few points about this and related issues, which I'll do later, after addressing my own decision treatment issues.)
PDL-1 is different. They are, in a sense, complementary or, perhaps, better, corollaries. The L stands for ligand which is a molecule which attaches to a target molecule. (Modern computer-asisted drug design involves speculative computer modelling of properties of materials, making educated guesses as to the consequences of such fits. It's highly relevant in current cancer drug research and design.)
As I understand it (subject, as ever, to correction by those more knowledgeable) the various new immunomodulatory agents are using one of two methods of attack - either attaching to the receptors on cancer cells or to those on our immune system's cells that the cancer is managing to hide from. Hence there are two different categories of drugs at work here and Fox's and Paula's are from opposite camps.
Also, there is rapid and increasingly competitive development going on between the various companies comprising Big Pharma. The drug that Fox and John are on (as to which, more anon) is already in the second generation of these and the one Paula is now on is part of the third generation and from a different company from BMS (and its predecessor in the development of MDX-1106, Medarex), Genentech.
Consequently (among several other reasons I'll leave aside just now) it's not possible to draw the posological parallels you've made and, beyond that, there are two stages in the trial phase that Paula's in, with different dosage protocols. So, you see, you shouldn't be concerned about the difference in apparent dosage decisions as between John's and Paula's regimens. It would be like comparing apples with orang utangs!
I've just watched the excellent YouTube video by Suzanne Topalian from JHH which goes helpfully into this topic - wish I'd seen it earlier, but better late than never! It's entitled
"Anti-PD-1 (BMS-936558, MDX-1106) in advanced solid tumors"
and can be found at:
http://www.youtube.com/watch?v=Ij_hq_52K7M
There's a related video with the same provenance
http://www.youtube.com/watch?v=kCY0dHB_eyY&NR=1&feature=endscreen
also well worth watching, entitled
"Harnessing the Immune System to Fight Cancer"0 -
Thanks TWTexas_wedge said:Questions (continuation)
I've just watched the excellent YouTube video by Suzanne Topalian from JHH which goes helpfully into this topic - wish I'd seen it earlier, but better late than never! It's entitled
"Anti-PD-1 (BMS-936558, MDX-1106) in advanced solid tumors"
and can be found at:http://www.youtube.com/watch?v=Ij_hq_52K7M
There's a related video with the same provenancehttp://www.youtube.com/watch?v=kCY0dHB_eyY&NR=1&feature=endscreen
also well worth watching, entitled
"Harnessing the Immune System to Fight Cancer"
These videos were extremely informative. Thanks for alerting me and others. I do hope it's working for me....hard to tell right now. New scans the end of November.0 -
How are you feeling?pjune127 said:Thanks TW
These videos were extremely informative. Thanks for alerting me and others. I do hope it's working for me....hard to tell right now. New scans the end of November.
Just wondering how you are feeling Paula? You've been quiet recently. Hope no news is good news but looking for a *tweener (*in between treatment) report.0 -
You are right on target, Alice!alice124 said:How are you feeling?
Just wondering how you are feeling Paula? You've been quiet recently. Hope no news is good news but looking for a *tweener (*in between treatment) report.
I have been a little puny over the last 10 days. I have been plagued by low grade fever that comes and goes (with tylenol) and a somewhat overwhelming depression that I was finally convinced today is a veritable side effect of the treatment. It is not like me to be gloom and doom, uninterested, and antisocial; however over the last week or so I have hardly recognized myself. So...I called SCRI today, talked to a research nurse and was told the fever was all right, as long as I didn't have rigors, a productive cough, or muscle pain so bad I could not get out of bed. None of that applies to me. That was affirming. The depression I am told is a side effect. I hate it and I am determined to beat it. Today I forced myself to go out to lunch with a friend and visit another friend this evening. It's amazing how being busy is a true antidote, but it is a real challenge to get myself up and out. I'm afraid I have worn my husband out. He has done everything but stand on his head to cheer me up. Thankfully, on Wednesday we are going up into the mountains. We have rented a cabin with my brother and sister in law and are spending 5 nights there. A change of scenery will be good for me and I do love my brother and sister in law sooo much. They will also take me off Ed's hands for a few days. Good for everyone all around! Honestly, I don't feel too bad physically. It doesn't compare to being on Sutent and dealing with blistered hands and feet!! I do think the emotional aspect has bummed me out. I have always been the one with energy and drive and desire and positive attitude. Looks like "Bad Paula" has taken residence in my body for a bit. Maybe she will leave after Halloween. LOL I go to Nashville on the 7th with treatment on the 8th. It will be good to have #2 under my belt and have 3 more weeks until scans! Thanks Alice, for noticing I have been "away". You have no idea what a boost it was just to know that you noticed!
Hugs,
Paula xo0 -
Right on targetpjune127 said:You are right on target, Alice!
I have been a little puny over the last 10 days. I have been plagued by low grade fever that comes and goes (with tylenol) and a somewhat overwhelming depression that I was finally convinced today is a veritable side effect of the treatment. It is not like me to be gloom and doom, uninterested, and antisocial; however over the last week or so I have hardly recognized myself. So...I called SCRI today, talked to a research nurse and was told the fever was all right, as long as I didn't have rigors, a productive cough, or muscle pain so bad I could not get out of bed. None of that applies to me. That was affirming. The depression I am told is a side effect. I hate it and I am determined to beat it. Today I forced myself to go out to lunch with a friend and visit another friend this evening. It's amazing how being busy is a true antidote, but it is a real challenge to get myself up and out. I'm afraid I have worn my husband out. He has done everything but stand on his head to cheer me up. Thankfully, on Wednesday we are going up into the mountains. We have rented a cabin with my brother and sister in law and are spending 5 nights there. A change of scenery will be good for me and I do love my brother and sister in law sooo much. They will also take me off Ed's hands for a few days. Good for everyone all around! Honestly, I don't feel too bad physically. It doesn't compare to being on Sutent and dealing with blistered hands and feet!! I do think the emotional aspect has bummed me out. I have always been the one with energy and drive and desire and positive attitude. Looks like "Bad Paula" has taken residence in my body for a bit. Maybe she will leave after Halloween. LOL I go to Nashville on the 7th with treatment on the 8th. It will be good to have #2 under my belt and have 3 more weeks until scans! Thanks Alice, for noticing I have been "away". You have no idea what a boost it was just to know that you noticed!
Hugs,
Paula xo
Just you stay right on target Paula. Trust Alice to be looking out for you. Think of Fox.
Giving Ed a break and yourself a change of scenery sounds like an inspired move and I hope you have a great time. Being in the mountains is a lot better than being by the seaside on the east coast at present and I hope to hear that Alice and John, Nano, iceman's family and others are escaping the worst of it all.
Get professional help if the depression persists, though I'm guessing it won't. Stay active; remember how much nastier it was with bad HFS; keep your eyes on the prize now you're on a promising new treatment and blazing the pathways along with Fox.0 -
Bad Paula...pjune127 said:You are right on target, Alice!
I have been a little puny over the last 10 days. I have been plagued by low grade fever that comes and goes (with tylenol) and a somewhat overwhelming depression that I was finally convinced today is a veritable side effect of the treatment. It is not like me to be gloom and doom, uninterested, and antisocial; however over the last week or so I have hardly recognized myself. So...I called SCRI today, talked to a research nurse and was told the fever was all right, as long as I didn't have rigors, a productive cough, or muscle pain so bad I could not get out of bed. None of that applies to me. That was affirming. The depression I am told is a side effect. I hate it and I am determined to beat it. Today I forced myself to go out to lunch with a friend and visit another friend this evening. It's amazing how being busy is a true antidote, but it is a real challenge to get myself up and out. I'm afraid I have worn my husband out. He has done everything but stand on his head to cheer me up. Thankfully, on Wednesday we are going up into the mountains. We have rented a cabin with my brother and sister in law and are spending 5 nights there. A change of scenery will be good for me and I do love my brother and sister in law sooo much. They will also take me off Ed's hands for a few days. Good for everyone all around! Honestly, I don't feel too bad physically. It doesn't compare to being on Sutent and dealing with blistered hands and feet!! I do think the emotional aspect has bummed me out. I have always been the one with energy and drive and desire and positive attitude. Looks like "Bad Paula" has taken residence in my body for a bit. Maybe she will leave after Halloween. LOL I go to Nashville on the 7th with treatment on the 8th. It will be good to have #2 under my belt and have 3 more weeks until scans! Thanks Alice, for noticing I have been "away". You have no idea what a boost it was just to know that you noticed!
Hugs,
Paula xo
Hi Paula,
Three years ago today I woke up in the ICU all busted up, with a probable dx of RCC, and realizing it was not a dream. "Bad Gary"was running rampant until my mom (81 at the time) grabbed me by both shoulders, looked me dead in the eye (a chilling experience even without morphine) and told me "Gary, you will be fine!", Bad Gary whimpered off to a dark corner somewhere and never returned. Now, close your eyes, feel my hands squeezing your shoulders, visualize "Bad Paula looking out, seeing my ugly face and being scared back into the darkness from which she came, and hear my voice "PAULA, YOU WILL BE FINE!". Heed my advice or I'll be forced to send my mom "Bad Louise" down to see you. This is always a two sided fight, cancer doesn't just attack you physically, it attacks you mentally as well. You will win both battles, you are stronger than you think you are, you are a warrior and a dragon slayer, hang in there.
Godspeed,
Gary0
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