I was horrified today to hear about the clinical trial recipients in France who were recently disabled or became brain-dead from participating in a clinical trial, and my heart goes to them and their families.
I started my Second clinical trial 4 days ago.
When it comes to clinical trials, there are "Phases". Phase One is "first human to try it out after some success with the animals." Since diagnosed with Stage 4 cancer, I was under the impression that Phase One trials were for people who were just about to die, and who looked at trials from the perspective of "Why Not?"
I was shocked to learn that healthy people were used for these Phase One French studies. There are LOADS of dying people who would volunteer for a painkiller study--why'd the Rennes scientists use 'healthy' people?
My own clinical trial treatment options are Phase 3 (or 4?). Meaning that these anti-cancer drugs seem to be working very well in earlier studies, and now need only more numbers/volume to prove themselves to get accepted for general prescribed use.
Cancer patients don't get placebos: Jeepers, how cruel would THAT be? ("Oh, sorry, it was just SUGAR! No wonder you died!" )
But somewhere, at sometime, there was a Phase One trial user for any treatment I've had. It could have killed them. But it didn't, and I might live longer because the Cancer Person said "why not try it?"
But I never really looked at it that way until today.
I owe a lot of Brave People a big THANK YOU. But they're probably dead now (because of cancer, not because of the trial drug). So I thank their Caregivers, and I respect and deeply thank the Cancer People we lost so that I'm not dead yet.
With a year and a half life expectancy, Phase One clinical trials have still never been offered to me, I'm considered to be too healthy for that. Thank goodness I'm in the USA, not France.
My First trial was a bit iffy. That drug was Avastin. Not a cancer-killing drug, more of a secondary-hope-it-will-delay-whatever-drug. They were checking dosage, and had me on Avastin for ages. I guess to see how long it would take for patient failure? I don't know.
I took it until my joints were so sore I was almost crippled. So the doctor took me off of it.
But what was a little eerie was that, as I was taken off the trial by doctor's orders, the drug company never asked . . ."Did the issues resolve themselves? Did you recover?" You would hope that those would be questions, but there was never a follow-up. A year of physical therapy got me over the side effects, but maybe taking Avastin gave me that year? I doubt it.
I think that drug falls under the Bad Boyfriend rule of forgetting to call after they completely f. . . . . .
So my new, Second, clinical trial is MEK. Not Em-Ee-Kay, but "mek" like "blech" or "wreck" or "I'm-going-to-be-seck." It's targeted specifically to low-grade ovarian cancer people. Apparently, low-grade ovarian cancer is REALLY RARE. And all of you higher-grade ovarian cancer readers are in WAY better shape and circumstances than me. Take heart!
But speaking of which, MEK can have effects on the heart, so they take regular EKG scans.
"Echo Cardio Gram." explained the nurse.
"So what does the "K" stand for?" I asked.
Thinking. . .Thinking hard. . . Blank.
"I don't know," she said.
My life is in their hands. At least they're fun.
(You can't tell by the dramatic EKG photo, but it was quite relaxing and somewhat humorous. All the facial close-ups that my hubby took showed my double chin too much as I was laughing a lot so I'm posting a distance shot).
MEK can also affect your eyes.
It may cause my retinas to peel off or something like that.
It's a clinical trial. . . should I assume that the Phase 2 recipients lost sight for me to know about the retina risks? How do I right those sacrifices? Somebody experienced that for it to be logged as a risk. . .
Medical records are private. So when will clinical trials patients start their own bulletin boards for voicing effects and personal results? All it takes is someone to set it up who is Not Dead Yet.
(Uh oh, is that me? Help!)
So the MEK study pays for extremely frequent eye exams. My baseline was good. For now. If my retinas disintegrate, I'll be blind. But anyone who has ever seen the 5 Blind Boys of Alabama play live knows that there are far worse things in life than to be blind, and we just go take it from there.
So far, this MEK is not bad at all. I just take pills twice a day. It's an appetite suppressant. You'd think that terminal cancer, possible heart failure and potential near-future blindness would suppress one's appetite but surprisingly they don't. (NE14XNsalsa?) But MEK does.
I just weighed in at 192 lbs when my "good normal" is 165 lbs. Even my kilos-readers can skip the math and visualize those extra layers of FAT (eeew!)
Chemo CAN be fattening for some of us, but I attribute it mainly to the surgically-induced menopause. . . (can I salvage sexuality while feeling like a neutered cat?)
I have had no problem eating for a year, still don't, but now after starting the MEK I just have no particular desire to eat. YAY! Back to Normal! Taking the Zippy Greyhound back to Skinnyville!
Yesterday, I felt really yucky, so I chose the anti-nausea pill that makes me sleepy, because I had a dental appointment. Ta-da! Groggy though the whole thing, I didn't much notice the dentist's noisy drill. Hubby drove both ways, I lost a day but gained a filling. Love these cancer drugs.
During that day my stomach was asleep but my tastebuds needed a little something and got it. They call it "Culpeper Crack" because it's so addictive. It truly is. It's a butter-cheese-salty-creamy combo only sold in a small town 60 miles from here (conveniently halfway to my cancer center). The deli sells cheeses from a lovely Roquefort to Irish cheddars to cranberry chevres. But the 'Culpeper Crack' beats them all. One taste stopped any "cancer wasting" I was enjoying. I had seconds and thirds. And I searched my fridge for the rest of it the next morning, but hubby had finished it.
Perhaps we should initiate clinical trials to show the effects of good cheeses on cancer patients. We might enjoy some very positive results.
What? You want to see the 5 Blind Boys of Alabama too? Try this link. .
https://www.youtube.com/watch?v=bCfqS7HgAY0
I started my Second clinical trial 4 days ago.
When it comes to clinical trials, there are "Phases". Phase One is "first human to try it out after some success with the animals." Since diagnosed with Stage 4 cancer, I was under the impression that Phase One trials were for people who were just about to die, and who looked at trials from the perspective of "Why Not?"
I was shocked to learn that healthy people were used for these Phase One French studies. There are LOADS of dying people who would volunteer for a painkiller study--why'd the Rennes scientists use 'healthy' people?
My own clinical trial treatment options are Phase 3 (or 4?). Meaning that these anti-cancer drugs seem to be working very well in earlier studies, and now need only more numbers/volume to prove themselves to get accepted for general prescribed use.
Cancer patients don't get placebos: Jeepers, how cruel would THAT be? ("Oh, sorry, it was just SUGAR! No wonder you died!" )
But somewhere, at sometime, there was a Phase One trial user for any treatment I've had. It could have killed them. But it didn't, and I might live longer because the Cancer Person said "why not try it?"
But I never really looked at it that way until today.
I owe a lot of Brave People a big THANK YOU. But they're probably dead now (because of cancer, not because of the trial drug). So I thank their Caregivers, and I respect and deeply thank the Cancer People we lost so that I'm not dead yet.
With a year and a half life expectancy, Phase One clinical trials have still never been offered to me, I'm considered to be too healthy for that. Thank goodness I'm in the USA, not France.
My First trial was a bit iffy. That drug was Avastin. Not a cancer-killing drug, more of a secondary-hope-it-will-delay-whatever-drug. They were checking dosage, and had me on Avastin for ages. I guess to see how long it would take for patient failure? I don't know.
I took it until my joints were so sore I was almost crippled. So the doctor took me off of it.
But what was a little eerie was that, as I was taken off the trial by doctor's orders, the drug company never asked . . ."Did the issues resolve themselves? Did you recover?" You would hope that those would be questions, but there was never a follow-up. A year of physical therapy got me over the side effects, but maybe taking Avastin gave me that year? I doubt it.
I think that drug falls under the Bad Boyfriend rule of forgetting to call after they completely f. . . . . .
So my new, Second, clinical trial is MEK. Not Em-Ee-Kay, but "mek" like "blech" or "wreck" or "I'm-going-to-be-seck." It's targeted specifically to low-grade ovarian cancer people. Apparently, low-grade ovarian cancer is REALLY RARE. And all of you higher-grade ovarian cancer readers are in WAY better shape and circumstances than me. Take heart!
But speaking of which, MEK can have effects on the heart, so they take regular EKG scans. "Echo Cardio Gram." explained the nurse.
"So what does the "K" stand for?" I asked.
Thinking. . .Thinking hard. . . Blank.
"I don't know," she said.
My life is in their hands. At least they're fun.
(You can't tell by the dramatic EKG photo, but it was quite relaxing and somewhat humorous. All the facial close-ups that my hubby took showed my double chin too much as I was laughing a lot so I'm posting a distance shot).
It may cause my retinas to peel off or something like that.
It's a clinical trial. . . should I assume that the Phase 2 recipients lost sight for me to know about the retina risks? How do I right those sacrifices? Somebody experienced that for it to be logged as a risk. . .
Medical records are private. So when will clinical trials patients start their own bulletin boards for voicing effects and personal results? All it takes is someone to set it up who is Not Dead Yet.
(Uh oh, is that me? Help!)
So the MEK study pays for extremely frequent eye exams. My baseline was good. For now. If my retinas disintegrate, I'll be blind. But anyone who has ever seen the 5 Blind Boys of Alabama play live knows that there are far worse things in life than to be blind, and we just go take it from there.
So far, this MEK is not bad at all. I just take pills twice a day. It's an appetite suppressant. You'd think that terminal cancer, possible heart failure and potential near-future blindness would suppress one's appetite but surprisingly they don't. (NE14XNsalsa?) But MEK does.
I just weighed in at 192 lbs when my "good normal" is 165 lbs. Even my kilos-readers can skip the math and visualize those extra layers of FAT (eeew!)
Chemo CAN be fattening for some of us, but I attribute it mainly to the surgically-induced menopause. . . (can I salvage sexuality while feeling like a neutered cat?)
I have had no problem eating for a year, still don't, but now after starting the MEK I just have no particular desire to eat. YAY! Back to Normal! Taking the Zippy Greyhound back to Skinnyville!
Yesterday, I felt really yucky, so I chose the anti-nausea pill that makes me sleepy, because I had a dental appointment. Ta-da! Groggy though the whole thing, I didn't much notice the dentist's noisy drill. Hubby drove both ways, I lost a day but gained a filling. Love these cancer drugs.
During that day my stomach was asleep but my tastebuds needed a little something and got it. They call it "Culpeper Crack" because it's so addictive. It truly is. It's a butter-cheese-salty-creamy combo only sold in a small town 60 miles from here (conveniently halfway to my cancer center). The deli sells cheeses from a lovely Roquefort to Irish cheddars to cranberry chevres. But the 'Culpeper Crack' beats them all. One taste stopped any "cancer wasting" I was enjoying. I had seconds and thirds. And I searched my fridge for the rest of it the next morning, but hubby had finished it.
Perhaps we should initiate clinical trials to show the effects of good cheeses on cancer patients. We might enjoy some very positive results.
What? You want to see the 5 Blind Boys of Alabama too? Try this link. .
https://www.youtube.com/watch?v=bCfqS7HgAY0
