Dr. starting me on ERBITUX- I don't think I want it any one have any suggestions
Comments
-
Amy-
(Is the "Burger King" really groping you?)
(You can get big $$$ for that!)
Re:
"...... rec'd chemo twice during 04, and 05. then NED. was clean for 5 yrs
then last yr returned with mets to my lung. They are small tumors and....."
Big question: Is it really cc mets, or lung cancer? As far as I know,
no-one can diagnose the exact type of cancer without a biopsy.
The smaller question is: Do you prefer gambling with chemo, or
an alternative? (that's actually the bigger question)
I won't deliver a bunch of banter regarding the worthiness
of either. But if you're seriously interested, click on my
name and read both my experience, and the "blog".
Each of us has to make our own choices, and they should be
made without fear being the driving force.
Here's to another 50 years to add to your last 5 !!
Good health to you,
John0 -
Erbitux
Is one of the new "biologicals", so it is NOT a chemotherapy.
It works by blocking the epidermal growth factor receptor on the surface of the cell. It is often referred to as a targeted therapy, and many assume that means it targets only the cancer cells. Actually, it is targeted as it NOT designed to randomly kill fast growing cells (chemotherapy), rather it blocks a couple of receptors that send a message to the cell (any cell with EGFR, not just the cancer cells) to stop growing. Its major side effect is an acne like skin rash (there are other side effects, but unlike chemotherapy drugs those effects are on the rare side).
Only about 45% of CRC patients get any benefit from this drug, and their tumor will show what is referred to as the wild type KRAS gene. Your tumor can be tested determine in advance if your tumor has this gene (and not a mutated KRAS) and if the treatment will be successful.
I am currently on this treatment. I have been getting a combination of Irinotecan (chemotherapy) and Erbitux (biotherapy) once a week for two weeks, followed by one week with just Erbitux, then start it all up again. I dread the Irinotecan weeks, but find the Erbitux week to be very tolerable. The term for the combination is chemobiotherapy.
My rash has been both bad, and not too bad. I (like many others) get an antibiotic to control the rash, and I find if I use it regularly I have a mild rash, but if I forget, or just don't take it (I can be pretty bad with taking my meds) the rash gets really bad. Sun sensitivity is also an issue, at least for my face. That said, it has been bearable.
At least one person on this forum (philleig) has been on this treatment for years, and it has seemed to keep his cancer at bay. For me, my CEA dropped from 50 to 2.5 in the first three weeks of treatment.
So, I am not sure what you heard, but I have found this much preferable to Folfox or Folfiri.
As always, YMMV.
Blake0 -
Burger King?John23 said:Amy-
(Is the "Burger King" really groping you?)
(You can get big $$$ for that!)
Re:
"...... rec'd chemo twice during 04, and 05. then NED. was clean for 5 yrs
then last yr returned with mets to my lung. They are small tumors and....."
Big question: Is it really cc mets, or lung cancer? As far as I know,
no-one can diagnose the exact type of cancer without a biopsy.
The smaller question is: Do you prefer gambling with chemo, or
an alternative? (that's actually the bigger question)
I won't deliver a bunch of banter regarding the worthiness
of either. But if you're seriously interested, click on my
name and read both my experience, and the "blog".
Each of us has to make our own choices, and they should be
made without fear being the driving force.
Here's to another 50 years to add to your last 5 !!
Good health to you,
John
Looks more like Capt Hook or Capt Morgan to me, but hey, I could be wrong!
0 -
Hi Amy
I guess the bad things you've heard about it is the rash? That seems to be the biggest issue that people have had with it. I have been on Erbitux since April of 2006. Either just Erbitux or a combination of that with Irinotecan (CPT11) every two weeks for many treatments and it would keep the lung tumors at bay or make them grow slowly. I would take a break of 3 months here and there but every time I did that they tumors grew. I wound up having 3 lung operations (wedge resections) between the Spring of 2006 and the Summer of 2008. After those, I had 3 RFA (radio frequency ablations) with the last one being in December of 2009. I would switch between just Erbitux and Erbitux with CPT11. I found that the CPT11 would give me cramps that would sometimes take the better part of a week before I felt "normal" again. When I just do the Erbitux, I usually felt pretty good. The main drawback with Erbitux is the rash. It can be pretty nasty for some people. I had it moderate to severe. I remember stopping at some little kids lemonade stand one summer when the rash was bad and I know I scared the crap out of the kids. It was funny though, most people that I'd see at the supermarket really didn't pay much attention to me one way or the other. I think that WE are more self conscious about it. I always figured that at least I didn't have to look at it, other people did!
After a while on it the rash on the face lessens a lot. For the past 9+ months I've been on only Erbitux once every 3 weeks and I really have no rash to speak of on my face. I get some on my torso and legs but even that isn't bad at all.
I'd be curious as to where you read all of the bad press that it's been getting. I've found it to be a life-saver without a doubt. If I had/have to do this for another 10 years I'd do it in a heartbeat.
As far as it being chemo, I believe that it is one of the "new improved" treatments that targets certain aspects of cells and fights the cancer that way. It's nothing like the heavy duty stuff that many of us have done right after or prior to surgery.
I also did Avastin for 5 months prior to any surgery I had and it did what it was supposed to do. It starved the tumors in my liver and made me operable.
Hope this helps.
-phil0 -
I thought you were supposed to have it YOUR wayJohn23 said:Amy-
(Is the "Burger King" really groping you?)
(You can get big $$$ for that!)
Re:
"...... rec'd chemo twice during 04, and 05. then NED. was clean for 5 yrs
then last yr returned with mets to my lung. They are small tumors and....."
Big question: Is it really cc mets, or lung cancer? As far as I know,
no-one can diagnose the exact type of cancer without a biopsy.
The smaller question is: Do you prefer gambling with chemo, or
an alternative? (that's actually the bigger question)
I won't deliver a bunch of banter regarding the worthiness
of either. But if you're seriously interested, click on my
name and read both my experience, and the "blog".
Each of us has to make our own choices, and they should be
made without fear being the driving force.
Here's to another 50 years to add to your last 5 !!
Good health to you,
John
It looks like he's having it HIS way. It looks more Captain Hook to me but I'm not an expert in Burger-slop mascots! The Burger King dude is downright creepy!
He looks like some weird pedophile/stalker/ax murderer.
Anyway...Hi John ;-)
Just to comment on your comments, I have never had a biopsy prior to any of the 5 surgeries and 3 RFAs I've had. I did ask why at first and I was told that IF they took a sample from the wrong area and just missed the cancer, I could get the wrong result back and they might say "well, there's no cancer here" when there actually was. It made perfect sense to me. I would very often go over the actual scans with my oncologist and I could see for myself what was going on. I was never big on reading the reports because I happen to think I'm rather remarkable (so does my Mom!) and I got tired of reading that I wasn't remarkable ;-)
And the gambling thing...the Erbitux and Avastin are part of the new improved chemo's that are designed to target the tumors better than the older stuff. Either way it's a gamble.
To med or not to med...that is the question!
I know that many have had success with treatments other than chemo so I'm not saying my way is the only way. I did find it much easier than the regular old chemo but it still can be tough on the body.
Life's a gamble, sometimes we find ourselves between a rock and a hard place.
It's good to get reliable information and make choices based on that.
-phil0 -
YesBuckwirth said:Erbitux
Is one of the new "biologicals", so it is NOT a chemotherapy.
It works by blocking the epidermal growth factor receptor on the surface of the cell. It is often referred to as a targeted therapy, and many assume that means it targets only the cancer cells. Actually, it is targeted as it NOT designed to randomly kill fast growing cells (chemotherapy), rather it blocks a couple of receptors that send a message to the cell (any cell with EGFR, not just the cancer cells) to stop growing. Its major side effect is an acne like skin rash (there are other side effects, but unlike chemotherapy drugs those effects are on the rare side).
Only about 45% of CRC patients get any benefit from this drug, and their tumor will show what is referred to as the wild type KRAS gene. Your tumor can be tested determine in advance if your tumor has this gene (and not a mutated KRAS) and if the treatment will be successful.
I am currently on this treatment. I have been getting a combination of Irinotecan (chemotherapy) and Erbitux (biotherapy) once a week for two weeks, followed by one week with just Erbitux, then start it all up again. I dread the Irinotecan weeks, but find the Erbitux week to be very tolerable. The term for the combination is chemobiotherapy.
My rash has been both bad, and not too bad. I (like many others) get an antibiotic to control the rash, and I find if I use it regularly I have a mild rash, but if I forget, or just don't take it (I can be pretty bad with taking my meds) the rash gets really bad. Sun sensitivity is also an issue, at least for my face. That said, it has been bearable.
At least one person on this forum (philleig) has been on this treatment for years, and it has seemed to keep his cancer at bay. For me, my CEA dropped from 50 to 2.5 in the first three weeks of treatment.
So, I am not sure what you heard, but I have found this much preferable to Folfox or Folfiri.
As always, YMMV.
Blake
Thank you for the comment, yes I know it isn't chemo, andyet for some reason I am hesitant. but I am going to see what happens. Thanks again for your input. I apprciate it.0 -
YesPhillieG said:Hi Amy
I guess the bad things you've heard about it is the rash? That seems to be the biggest issue that people have had with it. I have been on Erbitux since April of 2006. Either just Erbitux or a combination of that with Irinotecan (CPT11) every two weeks for many treatments and it would keep the lung tumors at bay or make them grow slowly. I would take a break of 3 months here and there but every time I did that they tumors grew. I wound up having 3 lung operations (wedge resections) between the Spring of 2006 and the Summer of 2008. After those, I had 3 RFA (radio frequency ablations) with the last one being in December of 2009. I would switch between just Erbitux and Erbitux with CPT11. I found that the CPT11 would give me cramps that would sometimes take the better part of a week before I felt "normal" again. When I just do the Erbitux, I usually felt pretty good. The main drawback with Erbitux is the rash. It can be pretty nasty for some people. I had it moderate to severe. I remember stopping at some little kids lemonade stand one summer when the rash was bad and I know I scared the crap out of the kids. It was funny though, most people that I'd see at the supermarket really didn't pay much attention to me one way or the other. I think that WE are more self conscious about it. I always figured that at least I didn't have to look at it, other people did!
After a while on it the rash on the face lessens a lot. For the past 9+ months I've been on only Erbitux once every 3 weeks and I really have no rash to speak of on my face. I get some on my torso and legs but even that isn't bad at all.
I'd be curious as to where you read all of the bad press that it's been getting. I've found it to be a life-saver without a doubt. If I had/have to do this for another 10 years I'd do it in a heartbeat.
As far as it being chemo, I believe that it is one of the "new improved" treatments that targets certain aspects of cells and fights the cancer that way. It's nothing like the heavy duty stuff that many of us have done right after or prior to surgery.
I also did Avastin for 5 months prior to any surgery I had and it did what it was supposed to do. It starved the tumors in my liver and made me operable.
Hope this helps.
-phil
Wow Thank you also for the advice & info. I suppose the rash is what worries me , and I work at a school which I don't want to frighten, the kids yet if it saves mt life? !! I have done so many treatments, I guess this is what type drew up next for me. Yes, Been on avastin, gemsar & Xeloda past 6 momths. Whew I just hadn't heard much about it. and my dr rushed me into it I thought, without alot of explaination. so... Well Thanks again Take Care you seem so positive like I am. Guess I am just tired of all of it for the last years. But Hell I am good! Thank you Sincerely amy0 -
ErbutuxJohn23 said:Amy-
(Is the "Burger King" really groping you?)
(You can get big $$$ for that!)
Re:
"...... rec'd chemo twice during 04, and 05. then NED. was clean for 5 yrs
then last yr returned with mets to my lung. They are small tumors and....."
Big question: Is it really cc mets, or lung cancer? As far as I know,
no-one can diagnose the exact type of cancer without a biopsy.
The smaller question is: Do you prefer gambling with chemo, or
an alternative? (that's actually the bigger question)
I won't deliver a bunch of banter regarding the worthiness
of either. But if you're seriously interested, click on my
name and read both my experience, and the "blog".
Each of us has to make our own choices, and they should be
made without fear being the driving force.
Here's to another 50 years to add to your last 5 !!
Good health to you,
John
Actually Cap't Hook at Disneyland years ago.... when I was younger. but thank you for your advice. I take in all I can0 -
You're Welcomefmsamos said:Yes
Wow Thank you also for the advice & info. I suppose the rash is what worries me , and I work at a school which I don't want to frighten, the kids yet if it saves mt life? !! I have done so many treatments, I guess this is what type drew up next for me. Yes, Been on avastin, gemsar & Xeloda past 6 momths. Whew I just hadn't heard much about it. and my dr rushed me into it I thought, without alot of explaination. so... Well Thanks again Take Care you seem so positive like I am. Guess I am just tired of all of it for the last years. But Hell I am good! Thank you Sincerely amy
Like I said, the rash at first can be bad, it's not always bad but it can be a bit nasty. You'd be surprised how little people really notice though, it's more of a self-conscious thing I found. My profile photo was taken around this past forth of July. No zits!
Erbitux has been around for a while and it's been good to me.
As far as the kids go, if it "keeps them in line" then it's a plus
;-)
Best wishes, stay in contact with us here if you can.
-phil0 -
Amy -
Phil's oncologists are a rare find. They've found the best way
to help Phil, and probably many others.....So much so, that
if I ever decided to go the chemo route, I will pay Phil for
the names on his oncologist team!
You're doing the right thing by attempting to learn as much
as you can about the drugs you may decide to take. There
are pros and cons to everything in life, but most cancer struck
individuals become too scared, and just take whatever advice
they assume to be correct from whoever they decide is
knowledgeable enough to make decisions for them.
FDA Approves Avastin; Serious Side Effects
Sunday, 07 March 2004
Last Updated Wednesday, 17 March 2010
http://www.cancerdecisions.com/
Take note on the paragraph that explains the advantage of
taking these "new" drugs (new=2004). The "advantage" is
given in months and weeks, not years.
Take the time to understand the ramifications to your body
and health, should you live longer than the prognosis provided.
Even the most well educated individuals often confuse
"forward looking reports" with actual test data. There's a
very big difference between data designed to encourage
investments, and reports regarding the actual limitations
and failures of the item.
The FDA basis it's decisions on the data from the company,
and that data can often be quite convoluted. VIOXX is a great
example. Avastin for breast cancer, is another. In fact, the
list is near endless.
So make your own decisions based on all the information
you can garner. You're doing that now anyway, right?
But... also try to listen to your "gut feeling"; the basic life supporting
gift that we all have buried inside us. Some call it "intuition",
and other will say it's instinct. Either way, listen to it and heed it;
it just might save your life.
Best wishes for you.....
John0 -
Avastin and the FDAJohn23 said:Amy -
Phil's oncologists are a rare find. They've found the best way
to help Phil, and probably many others.....So much so, that
if I ever decided to go the chemo route, I will pay Phil for
the names on his oncologist team!
You're doing the right thing by attempting to learn as much
as you can about the drugs you may decide to take. There
are pros and cons to everything in life, but most cancer struck
individuals become too scared, and just take whatever advice
they assume to be correct from whoever they decide is
knowledgeable enough to make decisions for them.
FDA Approves Avastin; Serious Side Effects
Sunday, 07 March 2004
Last Updated Wednesday, 17 March 2010
http://www.cancerdecisions.com/
Take note on the paragraph that explains the advantage of
taking these "new" drugs (new=2004). The "advantage" is
given in months and weeks, not years.
Take the time to understand the ramifications to your body
and health, should you live longer than the prognosis provided.
Even the most well educated individuals often confuse
"forward looking reports" with actual test data. There's a
very big difference between data designed to encourage
investments, and reports regarding the actual limitations
and failures of the item.
The FDA basis it's decisions on the data from the company,
and that data can often be quite convoluted. VIOXX is a great
example. Avastin for breast cancer, is another. In fact, the
list is near endless.
So make your own decisions based on all the information
you can garner. You're doing that now anyway, right?
But... also try to listen to your "gut feeling"; the basic life supporting
gift that we all have buried inside us. Some call it "intuition",
and other will say it's instinct. Either way, listen to it and heed it;
it just might save your life.
Best wishes for you.....
John
John,
Neither Avastin nor Vioxx was up for discussion here, and your link is to, what I would refer to as, a site with a clear financial interest in making conventional treatments scary (they are scary, however you could choose sites with a less blatant financial interest), but there are some things that need to be added:
Avastin was approved for BC in 2008 against the recommendation of the FDA's own advisory panel, mostly on the basis of disease free progression.
In 2011 the FDA revisited Avastin, looked at the same data, and came to a different conclusion, this time removing its approval for the treatment of BC. There is legitimate controversy for both decisions. If I was sitting with metastatic BC today, I might like the idea of disease free progression.
Avastin continues to be an approved drug for CRC, and shows greater success than with BC.
"Take note on the paragraph that explains the advantage of
taking these "new" drugs (new=2004). The "advantage" is
given in months and weeks, not years."
I know you have trouble with this one, but those numbers refer to a median, in other words, the patient in the middle (half live longer, half live shorter). Here is a quote from study 2107:
"Median OS: 20.3 vs 15.6 months (hazard ratio [HR]=0.66, P<0.001)"
Why is that important to most on this board? Forums like this one trend younger than their actual demographic (I would guess the median age on this forum to be above 53 and below 60). The median age at dx for CRC is 74, so most of the patients on this forum are considerably younger (and healthier) than the general demographic of CRC patients.
In other words, those medians do not apply to us.
Here is a number for you: The two year survival rate from the 2107 study for the patients getting Folfox + Avastin was 50% greater than for the patients getting Folfox alone.
Lastly, the addition of Erbitux, Avastin and the current recommendation of liver resection have caused the survival rate for mCRC patients to double over the last decade.
Thanks John, and best of health to you.0 -
Blake -Buckwirth said:Avastin and the FDA
John,
Neither Avastin nor Vioxx was up for discussion here, and your link is to, what I would refer to as, a site with a clear financial interest in making conventional treatments scary (they are scary, however you could choose sites with a less blatant financial interest), but there are some things that need to be added:
Avastin was approved for BC in 2008 against the recommendation of the FDA's own advisory panel, mostly on the basis of disease free progression.
In 2011 the FDA revisited Avastin, looked at the same data, and came to a different conclusion, this time removing its approval for the treatment of BC. There is legitimate controversy for both decisions. If I was sitting with metastatic BC today, I might like the idea of disease free progression.
Avastin continues to be an approved drug for CRC, and shows greater success than with BC.
"Take note on the paragraph that explains the advantage of
taking these "new" drugs (new=2004). The "advantage" is
given in months and weeks, not years."
I know you have trouble with this one, but those numbers refer to a median, in other words, the patient in the middle (half live longer, half live shorter). Here is a quote from study 2107:
"Median OS: 20.3 vs 15.6 months (hazard ratio [HR]=0.66, P<0.001)"
Why is that important to most on this board? Forums like this one trend younger than their actual demographic (I would guess the median age on this forum to be above 53 and below 60). The median age at dx for CRC is 74, so most of the patients on this forum are considerably younger (and healthier) than the general demographic of CRC patients.
In other words, those medians do not apply to us.
Here is a number for you: The two year survival rate from the 2107 study for the patients getting Folfox + Avastin was 50% greater than for the patients getting Folfox alone.
Lastly, the addition of Erbitux, Avastin and the current recommendation of liver resection have caused the survival rate for mCRC patients to double over the last decade.
Thanks John, and best of health to you.</p>
Thanks. That was a very noble attempt at a positive
attitude regarding the continued failure of "new drugs".
"Both Erbitux and Avastin are genetically engineered versions of a
mouse antibody that contains both human and mouse components.
Avastin is the first angiogenesis inhibitor ever approved to
treat cancer. As such, it has generated a great deal of hope and
excitement. It appears to work in accordance with a theory put
forward 30 years ago by Prof. Judah Folkman of Harvard, who
suggested that by stopping the growth of new blood vessels one
could halt the growth of cancer."
From: http://www.cancerdecisions.com/
"(Reuters) - U.S. health advisers unanimously rejected use of the
drug Avastin for breast cancer, dealing a blow to its
manufacturer and patients who insisted that the medicine saved
their lives.
Advisers to the U.S. Food and Drug Administration agreed that the
Roche Holding AG drug was not safe or clinically beneficial,
based on several years of follow-up trials.
Their vote endorsed an FDA move in December to revoke its
approval for Avastin in breast cancer. FDA Commissioner Margaret
Hamburg is due to make a final decision later.
"No matter what way we look at it, there's nothing we can hang
our hat on in these studies that would make me feel comfortable
continuing to expose a lot of patients to risk without a clear
benefit," said Mikkael Sekeres, associate professor of medicine
at the Cleveland Clinic Taussig Cancer Institute and one of the
panel members."
From: http://www.reuters.com
There's a "rule of thumb" Blake, that -if- there is one
lie in a part of testimony, one has the right to reject all
of the testimony. The FDA approved Avastin based
on the data provided by the manufacturer of Avastin.
That data was later to be found to be false.
How many cancer sufferers have been exposed to treatments
that have left them with permanent neurological damage,
and second cancers, without the drug doing one damned thing
to help them fight cancer?
Blake, the promotion of "wishful thinking" -does not- help
anyone attempting to decide their choice regarding their
efforts to deal with cancer.
Every one of us here, lives in fear of cancer. Every single one
of us here, is trying to make the right decisions regarding
our personal fight to stay alive.
Every ounce of data available should be weighed and tested
for corroboration from qualified sources.
There's simply no room or time to explore 'wishful thinking"
while ignoring realistic, factual data.
Stay well,
John0 -
"That data was later to be found to be false."John23 said:Blake -
Thanks. That was a very noble attempt at a positive
attitude regarding the continued failure of "new drugs".
"Both Erbitux and Avastin are genetically engineered versions of a
mouse antibody that contains both human and mouse components.
Avastin is the first angiogenesis inhibitor ever approved to
treat cancer. As such, it has generated a great deal of hope and
excitement. It appears to work in accordance with a theory put
forward 30 years ago by Prof. Judah Folkman of Harvard, who
suggested that by stopping the growth of new blood vessels one
could halt the growth of cancer."
From: http://www.cancerdecisions.com/
"(Reuters) - U.S. health advisers unanimously rejected use of the
drug Avastin for breast cancer, dealing a blow to its
manufacturer and patients who insisted that the medicine saved
their lives.
Advisers to the U.S. Food and Drug Administration agreed that the
Roche Holding AG drug was not safe or clinically beneficial,
based on several years of follow-up trials.
Their vote endorsed an FDA move in December to revoke its
approval for Avastin in breast cancer. FDA Commissioner Margaret
Hamburg is due to make a final decision later.
"No matter what way we look at it, there's nothing we can hang
our hat on in these studies that would make me feel comfortable
continuing to expose a lot of patients to risk without a clear
benefit," said Mikkael Sekeres, associate professor of medicine
at the Cleveland Clinic Taussig Cancer Institute and one of the
panel members."
From: http://www.reuters.com
There's a "rule of thumb" Blake, that -if- there is one
lie in a part of testimony, one has the right to reject all
of the testimony. The FDA approved Avastin based
on the data provided by the manufacturer of Avastin.
That data was later to be found to be false.
How many cancer sufferers have been exposed to treatments
that have left them with permanent neurological damage,
and second cancers, without the drug doing one damned thing
to help them fight cancer?
Blake, the promotion of "wishful thinking" -does not- help
anyone attempting to decide their choice regarding their
efforts to deal with cancer.
Every one of us here, lives in fear of cancer. Every single one
of us here, is trying to make the right decisions regarding
our personal fight to stay alive.
Every ounce of data available should be weighed and tested
for corroboration from qualified sources.
There's simply no room or time to explore 'wishful thinking"
while ignoring realistic, factual data.
Stay well,
John
The information on Avastin for BC is the same now as it was in 2008. The difference is a new administration looking at the data and coming the same conclusion that the original advisory council did: Avastin's benefits are not outweighed by either risk or cost when compared to the efficacy of current treatments for BC.
Care to find something that shows that data was falsified? It is a hell of a charge. Other, of course, than information from a site where the site owner, a psychiatrist, charges for reports (rectal cancer "Starting at: $297.00") with his "better" treatments.
Please, you are usually the first to jump on any kind site with a sales pitch or other conflict of interest.
This will be my last post here, as we are way off topic and are hijacking this thread. If you wish to continue the conversation we can do it via PM, or you can start an Avastin thread.
Best of health to you John.0 -
Erbitux / Cetuximab
I was diagnosed with Stage IV metastatic colon cancer on March 31. Tumors covered both lobes of the liver, eliminating surgery as an immediate option. Drs started the FOLFOX regimen April 2. After 2 rounds, I developed severe blood clotting around my port, so the Fluorouracil IV was stopped and switched to Xeloda - an oral version of the fluorouracil. During the first 3 rounds, the liver tumors shrunk by almost 40%. There's a long story about insurance not covering Cetuximab that I won't get into, but after the 4th round of chemo, I transferred to the VA Medical Center in Gainesville, FL. Doctors there are provided by UF-Shands Medical Center. With insurance questions now resolved, I was started on Cetuximab 2 weeks ago - I've now received 2 infusions.
At the end of the first week of Cetuximab, I started mildly breaking out in pimples. After the 2nd round, it became dramatically worse, and I now have pimples all over - from the waist up! The worst of it covers my face on and around my nose, under my eyes and on my forehead. It has been pretty uncomfortable at times, but seems now to be easing up.
I have found a moisturizing cleanser the best to use so far. Acne type cleansers have been too harsh, and added to the burn. Living in Florida, I now stay out of the sun and use a sun block/moisturizer before going out. The Oxiliplatin that is part of my chemo makes be quite sensitive to cold and sun, so i have added incentive to stay covered up / lathered up.
I have also heard that the pimples/rash is a sign that the body is detoxifying itself of the cancer cells, so I am very encouraged. On Tuesday of next week, Aug 23, I will have another CT scan to evaluate the health of my liver. If the tumors have shrunk enough, surgery will be possible. All I hear of Cetuximab is good. If acne is the worst of the side effects, I'll take it.
Good luck with your treatments, which ever way you decide to go.0 -
just goodluck
dear amy,
sorry your back, if you go down the chemo path ask your onc about milk thistle to protect your liver.
i did TCM while on my chemo and survived well enough.
peace of mind and peace in your heart are my top priorities. they give you a survival edge.
it helps to keep the treatment decisions in context. I have some friends in my bowel cancer support group doing well on erbitux, they should not be here, but they are.
hugs,
pete
ps your invited to join the walking post for a peaceful stroll.0 -
I went on Avastin right after it was approved by the FDA. I jumped at the chance. I weighed the risks vs. the benefits about how the drug worked. I didn't read abstracts about it, to me it's like listening to a politician. I have no idea what the POINT is.John23 said:Amy -
Phil's oncologists are a rare find. They've found the best way
to help Phil, and probably many others.....So much so, that
if I ever decided to go the chemo route, I will pay Phil for
the names on his oncologist team!
You're doing the right thing by attempting to learn as much
as you can about the drugs you may decide to take. There
are pros and cons to everything in life, but most cancer struck
individuals become too scared, and just take whatever advice
they assume to be correct from whoever they decide is
knowledgeable enough to make decisions for them.
FDA Approves Avastin; Serious Side Effects
Sunday, 07 March 2004
Last Updated Wednesday, 17 March 2010
http://www.cancerdecisions.com/
Take note on the paragraph that explains the advantage of
taking these "new" drugs (new=2004). The "advantage" is
given in months and weeks, not years.
Take the time to understand the ramifications to your body
and health, should you live longer than the prognosis provided.
Even the most well educated individuals often confuse
"forward looking reports" with actual test data. There's a
very big difference between data designed to encourage
investments, and reports regarding the actual limitations
and failures of the item.
The FDA basis it's decisions on the data from the company,
and that data can often be quite convoluted. VIOXX is a great
example. Avastin for breast cancer, is another. In fact, the
list is near endless.
So make your own decisions based on all the information
you can garner. You're doing that now anyway, right?
But... also try to listen to your "gut feeling"; the basic life supporting
gift that we all have buried inside us. Some call it "intuition",
and other will say it's instinct. Either way, listen to it and heed it;
it just might save your life.
Best wishes for you.....
John
I was part of an AP story back in 04-05(?) about the high cost of drugs and whether they are worth it. Part of it talked about how, at $17000 a month for Avastin, is it worth it if people lived an average of x amount of months. So I've lived about 90 months after taking it. Yeas, it was worth it.
This is what gets me with stats. They often take people who are SO sick that that it would pretty much take a miracle to "cure" them. It's not the average person who was in my position or what sounds like many people's position. Yes, Grandpa, who was 98 years old and had stage IV colon cancer (plus no prostate, 1/2 a lung, blind in one eye, and had syphilis) didn't life more than 5 months when given Avastin. Not to be mean, but I have a hunch Grandpa wasn't going to hit 120 anyway.
I don't recall reading anything positive about anything (other than walking!) that is not measured in months.
There will never be a consensus on here, nor should there be, about treatment options. Just as there are many ways to get cancer, there are many ways to get through it. I agree with John, don't let fear drive you. Fear of other options or fear of what is available for you to use by the medical community. Some of them DO actually care about us.
-phil
PS: I just went with a great Cancer Center-Sloan Kettering.
Research, find doctors who are not too old to try new things, not too young to do things recklessly and don't have enough "hands on" experience.
If you enclose a self-addressed stamped envelope, filled with as many unmarked $50 bills as possible and send it to me, I will release the names of my team
:-)
**UPDATE**
For the rash I took minocyclin which helped for me. I also always tried to use non-scented soaps and lotions. It can really stink for a while but it does ease up over time. ALSO, I have been told (at Sloan) that the absence of a rash does not mean that it is NOT working but when you get the rash, it's nice to know it's doing it's job.
Good luck with your decisions. I hope that my comments were helpful to you.
-p0 -
my mompete43lost_at_sea said:just goodluck
dear amy,
sorry your back, if you go down the chemo path ask your onc about milk thistle to protect your liver.
i did TCM while on my chemo and survived well enough.
peace of mind and peace in your heart are my top priorities. they give you a survival edge.
it helps to keep the treatment decisions in context. I have some friends in my bowel cancer support group doing well on erbitux, they should not be here, but they are.
hugs,
pete
ps your invited to join the walking post for a peaceful stroll.
she's had eight rounds (once a week). The spots in her chest have shrunk, but the spots around her colon have grown a little. The doctor assured her that is was very slow growing. He is going to keep her on it....says it's a great medication. We'll wait and see.
Good Luck. FM0
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