Relative to my prior blog....a friend shared this link with me, that had been passed to him from his dermatologist. (Dr. Sondak works with Dr. Weber). Thought it was pretty informative and to the point. c
Friday, October 21, 2011
Cold, hard, facts about melanoma treatments!!!
There is so much confusion, wishful thinking, denial, and desperation on some of the melanoma boards I have looked at lately!! It makes me very sad...and I guess if I were brave I would post this info there. However, people who are (or have loved ones) on various drugs or trials often do not like it when someone tries to delve into the reality of the results or lack thereof. So here is the scoop:
Interferon: Though some papers report better tolerated when pegalated...many patients, docs and other papers report no difference. Results for peg is no better. Data shows Interferon provides a 10% response rate, meaning - overall survival is improved by 10% over 5 years.
Ipi (now Yervoy): Provides a 47% chance of 1 year survival and a 25% chance of a two year survival. Some studies, especially in treatment naive patients, report a response rate of 40-50%. The average published response rate is 20%. The first numbers are those given in some individual studies.
Anti-PD1: The data here is very limited. (They're waiting to see what happens to me!!!!...and my fellow lab rats!) Published response rate is 30%, but it is not really comparable data because it was attained from a very small group.
IL2: 10% of patients have a response. 4-5% have a durable response, meaning living possibly as long as 5 years, though it is rather undefined.
Vaccine therapy....MAGE 3: Statistically improved survival, but a very restricted population because you must have the antigen to elicit the response.
BRAF: 50% of melanoma patients have the required mutation. (Obviously, this means 50% of folks do not...therefore the treatment is useless for them.) 70-80% of people with the needed antigen have a response that remains durable for 7-8 months.
These are all data points on a graph. Individual patients do better and worse. Some people will have no response at all to a drug with the best documented response rates and others will do very well, for longer than expected, to drugs with the worst response rate history. However, one fact is very clear - All of the treatments provide their best response when taken with the least tumor burden possible.
Perhaps there are those that this will help. Hiding your head under the sand, or under your pillow, will not. Much love - c
PS: Obviously, potential side effects and drug availability are a whole other can of worms....but I thought we'd just start here!!!
Interferon: Though some papers report better tolerated when pegalated...many patients, docs and other papers report no difference. Results for peg is no better. Data shows Interferon provides a 10% response rate, meaning - overall survival is improved by 10% over 5 years.
Ipi (now Yervoy): Provides a 47% chance of 1 year survival and a 25% chance of a two year survival. Some studies, especially in treatment naive patients, report a response rate of 40-50%. The average published response rate is 20%. The first numbers are those given in some individual studies.
Anti-PD1: The data here is very limited. (They're waiting to see what happens to me!!!!...and my fellow lab rats!) Published response rate is 30%, but it is not really comparable data because it was attained from a very small group.
IL2: 10% of patients have a response. 4-5% have a durable response, meaning living possibly as long as 5 years, though it is rather undefined.
Vaccine therapy....MAGE 3: Statistically improved survival, but a very restricted population because you must have the antigen to elicit the response.
BRAF: 50% of melanoma patients have the required mutation. (Obviously, this means 50% of folks do not...therefore the treatment is useless for them.) 70-80% of people with the needed antigen have a response that remains durable for 7-8 months.
These are all data points on a graph. Individual patients do better and worse. Some people will have no response at all to a drug with the best documented response rates and others will do very well, for longer than expected, to drugs with the worst response rate history. However, one fact is very clear - All of the treatments provide their best response when taken with the least tumor burden possible.
Perhaps there are those that this will help. Hiding your head under the sand, or under your pillow, will not. Much love - c
PS: Obviously, potential side effects and drug availability are a whole other can of worms....but I thought we'd just start here!!!
Tuesday, October 18, 2011
Had a great trip to California.....
...San Fran, red woods, Napa and Sonoma....details and pics to come...it was wonderful with the most romantic man in the world. Had a good weekend with Rosie during her fall break....took her back down to Atlanta yesterday. Love you, Roo!! Back to the world of work today.
But...this one's for the Rose....and me....and you....
First, when there's nothing, but a slow growing dream
That your fear, seems to hide, deep inside your mind.
All alone, I have cried, silent tears, full of pride.
In a world made of steel, made of stone.
Then I, hear the music. Close my eyes, feel the rhythm
Wrap around, take a hold, of my heart....
What a feeling! Being's believing.
I can have it all now I'm dancing for my life.
Take your passion. And make it happen.
Pictures come alive, now I'm dancing through my life.
What a feeling! I AM MUSIC NOW!
Being's believing! I AM RHYTHM NOW!
Pictures come alive, now I'm dancing through my life.
What a feeling! YOU CAN REALLY HAVE IT ALL!
What a feeling! PICTURES COME ALIVE WHEN I CALL!
I can have it all! I CAN REALLY HAVE IT ALL!
Being's believing! TAKE YOUR PASSION!
AND MAKE IT HAPPEN!
What a feeling......
(Thanks Irene Cara!!!)
Loved all your poems and art, Rosie Roo! But most of all....I LOVE YOU!!!! mommy
But...this one's for the Rose....and me....and you....
First, when there's nothing, but a slow growing dream
That your fear, seems to hide, deep inside your mind.
All alone, I have cried, silent tears, full of pride.
In a world made of steel, made of stone.
Then I, hear the music. Close my eyes, feel the rhythm
Wrap around, take a hold, of my heart....
What a feeling! Being's believing.
I can have it all now I'm dancing for my life.
Take your passion. And make it happen.
Pictures come alive, now I'm dancing through my life.
What a feeling! I AM MUSIC NOW!
Being's believing! I AM RHYTHM NOW!
Pictures come alive, now I'm dancing through my life.
What a feeling! YOU CAN REALLY HAVE IT ALL!
What a feeling! PICTURES COME ALIVE WHEN I CALL!
I can have it all! I CAN REALLY HAVE IT ALL!
Being's believing! TAKE YOUR PASSION!
AND MAKE IT HAPPEN!
What a feeling......
(Thanks Irene Cara!!!)
Loved all your poems and art, Rosie Roo! But most of all....I LOVE YOU!!!! mommy
Monday, October 3, 2011
For Fred and Rose....
I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door that's closed,
I hope you keep on walking 'til you find the window,
If it's cold outside, show the world the warmth of your smile.
But more than anything, more than anything...
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yes, this, this is my wish.
I hope you never look back, but you never forget,
All the ones who love you, and the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
And may you find grace, in every mistake,
And always give more than you take.
But more than anything, yeah, more than anything...
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same thing too,
Yes, this, is my wish. My wish, for you.
(Thanks to Rascal Flatts)
-mommy
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door that's closed,
I hope you keep on walking 'til you find the window,
If it's cold outside, show the world the warmth of your smile.
But more than anything, more than anything...
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yes, this, this is my wish.
I hope you never look back, but you never forget,
All the ones who love you, and the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
And may you find grace, in every mistake,
And always give more than you take.
But more than anything, yeah, more than anything...
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same thing too,
Yes, this, is my wish. My wish, for you.
(Thanks to Rascal Flatts)
-mommy
Saturday, October 1, 2011
A lovely October weekend...
Autumn seems to have come to the TN valley and it blew in the Fred-man for his fall break. Bless him! He has been doing all sorts of manly things with his father - repairing gutters, cutting down trees, setting up watering systems. Les our dear neighbor and friend spied him sawing away in the back yard and yelled, "Working up a sweat, Fred?" Fred, never stopping his saw replied, "I'm home aren't I?" (Poor baby boy!!!) Then, today..we all went down to see Roo - the runner girl - in Atlanta. She ran a charity 5K this morning and came in FIRST in her age group - AGAIN!!!! (Thanks for being a great friend and going with her so early this morning, Corey!!!!!) We had a good time together. She got to take Fred around campus and then we were off to H-Mart for Korean Barbecue and groceries. I am so proud of them both.
Meanwhile, there are so many patients and their families dealing with the horrors of melanoma everyday. Incredible numbers have faced much more difficult times than I have and often with much less support. In contrast, I am doing well and have the support of each of you. A gift. One I shall never forget or be able to repay. You are appreciated.
However, just when you think your mouth ulcers and mucocytis have resolved, is NOT the time to have Hot Cheez-its!!! Just something to think about. Thought you should know. (See Tammy? There really may be some residual damage?????)
Much love - c
Meanwhile, there are so many patients and their families dealing with the horrors of melanoma everyday. Incredible numbers have faced much more difficult times than I have and often with much less support. In contrast, I am doing well and have the support of each of you. A gift. One I shall never forget or be able to repay. You are appreciated.
However, just when you think your mouth ulcers and mucocytis have resolved, is NOT the time to have Hot Cheez-its!!! Just something to think about. Thought you should know. (See Tammy? There really may be some residual damage?????)
Much love - c
Sunday, September 25, 2011
One more skin topic
One other point that has become part of the development of vitiligo is the development of papular, rough nodules, that grow in size and become rather scab like, before they gradually resolve. So far these have occurred in the areas that develop vitiligo. I had my first ones on my left forearm somewhere around the 4th infusion of the anti-pd1 and vaccine combo. Weber's NP seemed puzzled by them at the time, but we mentioned them again to Dr. Weber on my last visit. In fact, he was able to see a couple that were resolving in a patch of vitiligo on my back/shoulder. He said it was due to inflammation and it's resolution as cells were destroyed. Which makes us believe that can only mean that it's bits of melanoma that is being sought out by angry T cells! Which is kind of scary...but obviously better than if they remained there to do their thing. Of course, that's a little conjecture on our part, but... At any rate, I have had two on my cheek (that are almost resolved now) and new ones on my neck since my last infusion.
Good day here. Ran three miles today. Would have been pretty easy if it weren't for this rockin bruise and big lump just below my knee at my shin from my run in with an open drawer 2 days ago! I think the drawer won! Just call me grace! - c
Good day here. Ran three miles today. Would have been pretty easy if it weren't for this rockin bruise and big lump just below my knee at my shin from my run in with an open drawer 2 days ago! I think the drawer won! Just call me grace! - c
Bubbles
Feeling much stronger this week. Did an insane INSANITY workout on Friday, it was tough but I was much stronger than last week. Ran 2 miles with B and Z plus mowed and did some house work yesterday. (Thanks for all the support, Roo Roo!) Plan to run with them again today. Oddly enough, the mouth lesions that had resolved returned yesterday along with more itching. Nothing dreadful, just very WEIRD! New patches of vitiligo continue to develop. Bilateral inguinal nodes remain enlarged to the point that they are visible, not just palpable. Feel as though I am anti-PD1 possessed! But I suppose that's a good thing!??
Finally logged onto the Melanoma Research Foundation web site officially. Brent has followed these boards for years, but I never really had the strength....but some folks kept asking about anti-PD1 studies, so I thought my story might help. Had to use the name "Bubbles" since both 'Celeste' and 'Les' were taken. Poor Bent. Bet he never thought that pet name would be used in such a forum! Oh well, maybe my ebullient personality (his description, not mine!) is what has gotten me this far! Hoping you have an effervescent fall day! C
Finally logged onto the Melanoma Research Foundation web site officially. Brent has followed these boards for years, but I never really had the strength....but some folks kept asking about anti-PD1 studies, so I thought my story might help. Had to use the name "Bubbles" since both 'Celeste' and 'Les' were taken. Poor Bent. Bet he never thought that pet name would be used in such a forum! Oh well, maybe my ebullient personality (his description, not mine!) is what has gotten me this far! Hoping you have an effervescent fall day! C
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