Clinical Trials Question: Did you have to research and bring up the possibility yourself, or was it
Comments
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Too late?foxhd said:Too late
There's none left!
Damn. I forgot about the anchovies. They are totally healthy. Plenty of long-chain omega-3's and a great source of calcium. How about a Ceasar Salad instead?
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Anchovies..?? Really..??NanoSecond said:Too late?
Damn. I forgot about the anchovies. They are totally healthy. Plenty of long-chain omega-3's and a great source of calcium. How about a Ceasar Salad instead?
Anchovies..?? Really..?? Talk about a sodium rush..! Well, maybe not... so just for grins, I looked up Anchovies.. and found a link.. a wonderful link.. and this is a must share for anyone trying to reduce their sodium intake.. I bring you.. "Sodium Girl"...
http://www.sodiumgirl.com/low-sodium-anchovy-substitute/
Ron
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SodiumGSRon said:Anchovies..?? Really..??
Anchovies..?? Really..?? Talk about a sodium rush..! Well, maybe not... so just for grins, I looked up Anchovies.. and found a link.. a wonderful link.. and this is a must share for anyone trying to reduce their sodium intake.. I bring you.. "Sodium Girl"...
http://www.sodiumgirl.com/low-sodium-anchovy-substitute/
Ron
Ron. If you research all the issues regarding sodium you may be surprised to discover that it is not so evil after all. Just be careful out there.
I love anchovies. And sardines for that matter. Small fish like these do not have high levels of heavy metals like Mercury. That is why they are the perfect source for your omega-3's.
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We find what we seekNanoSecond said:Pizza or Beer?
Well I just can't seem to decide which is worse. Beer offers all those excess carbs (that's the major problem; not the alcohol) and pizza is heavy on carbs (starting with the dough made from wheat) plus all that added sugar (in the tomato sauce). The cheese is quite healthy but only if it comes from a grass-fed cow; same goes for the pepperoni and sausage. It's a tough choice...
What Neil Wrote:
Well I just can't seem to decide which is worse. Beer offers all those excess carbs (that's the major problem; not the alcohol) and pizza is heavy on carbs (starting with the dough made from wheat) plus all that added sugar (in the tomato sauce). The cheese is quite healthy but only if it comes from a grass-fed cow; same goes for the pepperoni and sausage. It's a tough choice...
What Fox read:
Beer offers alcohol. Pizza is quite healthy. Same goes for the pepperoni and sausage. It's a tough choice.
I must say Neil, your diet is well researched, proven, and obviously a great decision to help the effectiveness of all the meds we take, but you must remember what I said on the earlier post:
YOU WILL FIND ONLY WHAT YOU LOOK FOR.
Need I say more about Fox's response?
I myself enjoy fruit for breakfast, a Kale salad for lunch and a sensible dinner during the week. I'll have a pint or two and some pizza on the weekends.
Moderation in everything we do is important.
You guys are both great!
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We are all free to chooseDarron said:We find what we seek
What Neil Wrote:
Well I just can't seem to decide which is worse. Beer offers all those excess carbs (that's the major problem; not the alcohol) and pizza is heavy on carbs (starting with the dough made from wheat) plus all that added sugar (in the tomato sauce). The cheese is quite healthy but only if it comes from a grass-fed cow; same goes for the pepperoni and sausage. It's a tough choice...
What Fox read:
Beer offers alcohol. Pizza is quite healthy. Same goes for the pepperoni and sausage. It's a tough choice.
I must say Neil, your diet is well researched, proven, and obviously a great decision to help the effectiveness of all the meds we take, but you must remember what I said on the earlier post:
YOU WILL FIND ONLY WHAT YOU LOOK FOR.
Need I say more about Fox's response?
I myself enjoy fruit for breakfast, a Kale salad for lunch and a sensible dinner during the week. I'll have a pint or two and some pizza on the weekends.
Moderation in everything we do is important.
You guys are both great!
Of course I agree with you Darron. I just enjoy interacting with Fox. We both come at this "situation" from very different perspectives.
I really have no issue if someone decides to enjoy a pizza and beer every now and then - especially as a celebration. The real issue is stress relief after all.
But as for me - based on what I now know about how cells operate - well, I just can't do that ritual anymore.
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It's all partNanoSecond said:We are all free to choose
Of course I agree with you Darron. I just enjoy interacting with Fox. We both come at this "situation" from very different perspectives.
I really have no issue if someone decides to enjoy a pizza and beer every now and then - especially as a celebration. The real issue is stress relief after all.
But as for me - based on what I now know about how cells operate - well, I just can't do that ritual anymore.
of my personna. Is that the correct usage of the term? If I ate pizza and beer every time I said I did, I'd have to change my name to "Jobba the (pizza) Hut." I spent over 30 years involved in sports training and performance enhancement. I've worked with elite athletes. I could chart out the krebbs cycle. I knew cellular metabolism cold. I've also worked with and watched hundreds of people deteriorate and die. Kidney cancer is new territory for me but life and death isn't. No one gets out alive. We all die from something. If my number is coming up, I want to enjoy every last minute of my remaining life. (again, reaching my 60's helps with this philosophy. I feel terrible for everyone younger.)
Now don't get me wrong. I want to live much longer. And I can put up a good fight. But an extra taco isn't putting anyone 6 feet under. Not us anyway. I believe in the current medical model. I am alive because of it. The malfunction in our kidney programming is the culprit. It is not having lung cancer from smoking 2 packs a day. Health nuts get kidney cancer too. It's not our fault. Vegetarians die daily. Nutritionists die daily. And they don't live longer than the guy next door. There are always exceptions. Some cultures with specific diets do live longer. But that is also in their genetic make up. Our genetic coding was handed down to us from previous generations. Can't change that. Fitness experts die daily. Jim Fix was still running up to 10 miles a day with advanced heart disease until he died. He could only have lived longer with surgery and modern medicine. Diet did not kill him. Or lack of exercise. It was his genetic make up.
I applaude Neils mind and committed effort. Awesome stuff. Everyone can learn so much from him. He is the role model to emulate because he is using his brain alot more than the rest of us. The stratetician. Neil knows things his doctors haven't even thought about. If you want good medical care, let your doctor know you are smarted than he/she is. Keep them on their toes. I look at my cancer as a population out of control. It must be executed. I don't think we can starve it to death. Give me surgery, drugs and radiation. Then I'm going out for a beer! Maybe a calzone. I like to vary my diet.
Our first step at killing cancer is surgery. Get rid of it. It was too late for me. Like Vikings, it had already set sail for new lands to dominate. I decided that I would ride it like I stole it (biker reference)and die a happy man when the day came. Living retired means that I think much less. I smell the roses. I pet stray dogs. I find what gets overlooked and enjoy the good in it. I smile alot. I believe in the course of action of my doctors. Who by the way are also a LOT smarter than me. If my caregivers can't eliminate the cancer I'm out of luck. Fortunately, they are on the right track. I am reassessing how I spend my remaining life. But eliminating pizza and beer isn't one of them.
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I love you, Fox
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You too, NeilI am alive said:I love you, Fox
My fellow chromie
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Guys, I find this news very
Guys, I find this news very exciting! (about the new trials, not the beer/pizza/sodium stuff). I am fortunate enough to not have to be concerned about trials at the moment (fingers crossed that this continues) But you guys are stellar examples for us all to never give up. You are amazing people and I am proud to be associated with you. I wish I had the brain power you guys have, to understand all this medical jargon, but I don't. So I will settle for cheerleader. YAY TEAM!!
Hugs,
Jojo
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Thoughtsfoxhd said:It's all part
of my personna. Is that the correct usage of the term? If I ate pizza and beer every time I said I did, I'd have to change my name to "Jobba the (pizza) Hut." I spent over 30 years involved in sports training and performance enhancement. I've worked with elite athletes. I could chart out the krebbs cycle. I knew cellular metabolism cold. I've also worked with and watched hundreds of people deteriorate and die. Kidney cancer is new territory for me but life and death isn't. No one gets out alive. We all die from something. If my number is coming up, I want to enjoy every last minute of my remaining life. (again, reaching my 60's helps with this philosophy. I feel terrible for everyone younger.)
Now don't get me wrong. I want to live much longer. And I can put up a good fight. But an extra taco isn't putting anyone 6 feet under. Not us anyway. I believe in the current medical model. I am alive because of it. The malfunction in our kidney programming is the culprit. It is not having lung cancer from smoking 2 packs a day. Health nuts get kidney cancer too. It's not our fault. Vegetarians die daily. Nutritionists die daily. And they don't live longer than the guy next door. There are always exceptions. Some cultures with specific diets do live longer. But that is also in their genetic make up. Our genetic coding was handed down to us from previous generations. Can't change that. Fitness experts die daily. Jim Fix was still running up to 10 miles a day with advanced heart disease until he died. He could only have lived longer with surgery and modern medicine. Diet did not kill him. Or lack of exercise. It was his genetic make up.
I applaude Neils mind and committed effort. Awesome stuff. Everyone can learn so much from him. He is the role model to emulate because he is using his brain alot more than the rest of us. The stratetician. Neil knows things his doctors haven't even thought about. If you want good medical care, let your doctor know you are smarted than he/she is. Keep them on their toes. I look at my cancer as a population out of control. It must be executed. I don't think we can starve it to death. Give me surgery, drugs and radiation. Then I'm going out for a beer! Maybe a calzone. I like to vary my diet.
Our first step at killing cancer is surgery. Get rid of it. It was too late for me. Like Vikings, it had already set sail for new lands to dominate. I decided that I would ride it like I stole it (biker reference)and die a happy man when the day came. Living retired means that I think much less. I smell the roses. I pet stray dogs. I find what gets overlooked and enjoy the good in it. I smile alot. I believe in the course of action of my doctors. Who by the way are also a LOT smarter than me. If my caregivers can't eliminate the cancer I'm out of luck. Fortunately, they are on the right track. I am reassessing how I spend my remaining life. But eliminating pizza and beer isn't one of them.
Well Fox, if I had one-tenth the enthusiasm and super-human drive that you possess I would not worry about my diet either. Seriously.
I have never made the claim (nor would I) that any diet (or any lifestyle change such as exercise) - alone - can cause or greatly alter the course of cancer. Although it might help prevent it for those who are otherwise healthy. No one can say. Yet.
However, what I have set out to do is the exact same thing as you - maintain my quality of life and health as best as possible in the face of a clever disease and incredibly powerful drugs and therapies. Since joining the club that no one wants to join I also have tried to answer a simple question - what is the best diet for anyone facing advanced (or not so advanced) cancer? In the course of my research I have changed my thinking about this on numerous occasions. I expect I will continue to do so as I learn new things.
Finally, you categorically state that you "believe in the current medical model". Well so do I. But I just happen to spend time trying to figure out what that medical model is going to be in 5, 10, or 20 years from now and then act accordingly - since the odds are I am not going to be around to make it that far.
No matter what, though, I do not believe that the current medical model has been endorsing anyone to follow the "standard American Diet" (SAD). The "experts" may not agree on what to replace it with but that is a discussion for another day and likely another website.
Meanwhile I truly admire your indomitable spirit Fox. And if eating pizza and beer is responsible for it; who am I to judge?
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Diet... oh my.. we all haveJojo61 said:Guys, I find this news very
Guys, I find this news very exciting! (about the new trials, not the beer/pizza/sodium stuff). I am fortunate enough to not have to be concerned about trials at the moment (fingers crossed that this continues) But you guys are stellar examples for us all to never give up. You are amazing people and I am proud to be associated with you. I wish I had the brain power you guys have, to understand all this medical jargon, but I don't. So I will settle for cheerleader. YAY TEAM!!
Hugs,
Jojo
Diet... oh my.. we all have our opinions.. Initially post surgery March, 2012, I decided that I would have only one meal a month with red meat. In reality I had often gone several months without red meat. I did not miss it..! OK, so Neil said that maybe this was too much a reduction. So just over 2 weeks ago, I added red meat twice a week. The last 4 or 5 days, it is interesting that my blood pressure is now lower than it has been. When my B.P. dropped to 95/60 I cut back my B.P. meds. My average B.P. (on Inlyta) was 130/95. Now there is NO science behind any of this, just a single person observation. I still watch my sodium intake.. I get plenty of salt.. more than needed. Reduction not elimination is my sodium practice.
Now it has been about a year since I have had any pizza. And I know the exact date I had my last beer.. it was last August on the Isle of Man. Will have another beer this August..! Oh yes and a taste of red wine about a glass a month. I just do not miss any of that stuff... well I did have a craving for pizza when it got mentioned here... just did not do it.. yet.
Stay Well All..!!!
Ron - 5 months until the Isle of Man..!!
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thankyou
I have been away for awhile, but have kept up reading all the responses. I didn't want to write using my cellphone, if you know what I mean? I was so impressed with the vast amount of information shared by you gentlemen. You guys are the greatest! I learned so much from your personal quest for clinical trials. Thank you for sharing with me and others. You guys are something else...haha....start out all "smarty" and "clinical"....and end up with pizza and beer. Gotta love that. Where's the party?
BDS: We've heard the same things you have heard. Particularly that you don't stop what is working. Been on Inlyta for 1 year and going strong. Maybe I shouldn't even be thinking "what's next for us?"
Neil: I am excited for you being in a clinical trial and I really hope that you are doing well. Congratulations. I look forward to great success for you.
You gentlemen are the best!
Annie
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An anti-PDL1-Triala_oaklee said:thankyou
I have been away for awhile, but have kept up reading all the responses. I didn't want to write using my cellphone, if you know what I mean? I was so impressed with the vast amount of information shared by you gentlemen. You guys are the greatest! I learned so much from your personal quest for clinical trials. Thank you for sharing with me and others. You guys are something else...haha....start out all "smarty" and "clinical"....and end up with pizza and beer. Gotta love that. Where's the party?
BDS: We've heard the same things you have heard. Particularly that you don't stop what is working. Been on Inlyta for 1 year and going strong. Maybe I shouldn't even be thinking "what's next for us?"
Neil: I am excited for you being in a clinical trial and I really hope that you are doing well. Congratulations. I look forward to great success for you.
You gentlemen are the best!
Annie
Many thanks Annie.
Right now I am writing this from the NIH Hospital in Bethesda. I have to stay here until tomorrow morning for observation.
Yesterday morning I got my first my first infusion of an anti-PDL1 drug made by EMD Serono (a division of Merck in Germany). The infusion itself was uneventful. It took about one hour.
About 4 or 5 hours after the infusion ended I developed a fever of about 102.1. This, actually, is pretty normal for this drug. I initially declined to take any Tylenol to lower my fever because I have read research that showed that if a tumor becomes inflammed it will actually draw in more activated T-cells. Of course there is no guarantee that the fever was due to that but one can fantasize...
I finally did take some Tylenol prior to going to sleep. It brought my temperature down to about 101. But this morning my temperature and all vital signs are back to normal.
Other than seeing a large pink elephant flying around my bed yesterday there were no other side effects.
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Best wishesNanoSecond said:An anti-PDL1-Trial
Many thanks Annie.
Right now I am writing this from the NIH Hospital in Bethesda. I have to stay here until tomorrow morning for observation.
Yesterday morning I got my first my first infusion of an anti-PDL1 drug made by EMD Serono (a division of Merck in Germany). The infusion itself was uneventful. It took about one hour.
About 4 or 5 hours after the infusion ended I developed a fever of about 102.1. This, actually, is pretty normal for this drug. I initially declined to take any Tylenol to lower my fever because I have read research that showed that if a tumor becomes inflammed it will actually draw in more activated T-cells. Of course there is no guarantee that the fever was due to that but one can fantasize...
I finally did take some Tylenol prior to going to sleep. It brought my temperature down to about 101. But this morning my temperature and all vital signs are back to normal.
Other than seeing a large pink elephant flying around my bed yesterday there were no other side effects.
I'm very happy for you that you successfully got into a AntiPDL1 trial. I hope you remain comfortable. I always appreciate the knowledge you share. You must really keep the doctors on their toes. How's the hospital food?
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Hospital Fooda_oaklee said:Best wishes
I'm very happy for you that you successfully got into a AntiPDL1 trial. I hope you remain comfortable. I always appreciate the knowledge you share. You must really keep the doctors on their toes. How's the hospital food?
Well Fox would like love it since he can have all the pizza he wants. The food actually tastes good but it is very hard for me to come up with a low carb diet based on the choices in the menu. So my wife has been bringing me "adjuvant therapy". Luckily I will get out tomorrow.
The nurses here are really on the ball though. Several of them want to know all about low carb diets and why they are the healthiest. They are very open minded which makes me quite optimistic for the future.
The ironic part of my stay is that I am in the middle of reading a wonderful history of Immunology starting with Coley's Toxins and ending with a detailed history of the introduction of HDIL2 therapy - right here at the NIH by Dr. Stephen Rosenberg and his cohorts. I even saw him strolling down the hall a little while ago.
If anyone wants to understand why HDIL2 remains rather controversial to this day I highly recommend reading, "A Commontion in the Blood" by Stephen S. Hall.
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booksNanoSecond said:Hospital Food
Well Fox would like love it since he can have all the pizza he wants. The food actually tastes good but it is very hard for me to come up with a low carb diet based on the choices in the menu. So my wife has been bringing me "adjuvant therapy". Luckily I will get out tomorrow.
The nurses here are really on the ball though. Several of them want to know all about low carb diets and why they are the healthiest. They are very open minded which makes me quite optimistic for the future.
The ironic part of my stay is that I am in the middle of reading a wonderful history of Immunology starting with Coley's Toxins and ending with a detailed history of the introduction of HDIL2 therapy - right here at the NIH by Dr. Stephen Rosenberg and his cohorts. I even saw him strolling down the hall a little while ago.
If anyone wants to understand why HDIL2 remains rather controversial to this day I highly recommend reading, "A Commontion in the Blood" by Stephen S. Hall.
"Adjuvant therapy"...haha. Nice term for sneaking in food. Im so glad she's there to keep you company and bring the food that you want.
I'm sure the nurses find you to be a very interesting patient considering the vast amount of knowledge that you have. I checked out that book on Amazon. I was wondering if it would be very technical and beyond my comprehension. But alas, the reviews said it was very well written and not difficult to understand. Do you have other titles of books you care to share? I think it's free shipping on orders over a certain dollar amount!! Haha.
Question re trials: Does a participant need to have "active" mets to be in trials? Someone wrote that "they" need something to measure. Or are all trials different?
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Booksa_oaklee said:books
"Adjuvant therapy"...haha. Nice term for sneaking in food. Im so glad she's there to keep you company and bring the food that you want.
I'm sure the nurses find you to be a very interesting patient considering the vast amount of knowledge that you have. I checked out that book on Amazon. I was wondering if it would be very technical and beyond my comprehension. But alas, the reviews said it was very well written and not difficult to understand. Do you have other titles of books you care to share? I think it's free shipping on orders over a certain dollar amount!! Haha.
Question re trials: Does a participant need to have "active" mets to be in trials? Someone wrote that "they" need something to measure. Or are all trials different?
Hi Annie,
First of all, the book is extremely well written and no more "technical" than the Pulitzer prize-winning, "Emperor of All Maladies". You will not find it difficult to follow at all and probably far more interesting. I just wish it did not stop in 1996 (when it was written). So much has happened since then.
I have a pile of books yet to read. So this 3-day hospital break has given me the opportunity to start catching up on some of them. In my guide to nutrition I mention all the books that I have found useful (so far) in investigating nutrition and now, immunotherapies. So if you would like the latest version just let me know.
Yes, you do have to have active mets to be in many of these trials. And those mets have to be large enough to be measured.
Finally, yes, the protocol of each trial is different and must be adhered to.
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