Aa
why do we complain about inteferon and cancer patients don't complain about chemo??
"Chemo is a horrible treatment for many, radiation isn't much better. I wonder why people get angry about a rough hep C treatment that, to date, is the only chance for a cure, but don't about chemo?"
Someone recently sent the above to me in a discussion.
I thought it'd be interesting to see what you all think??
Someone recently sent the above to me in a discussion.
I thought it'd be interesting to see what you all think??
Hi OH.. I have been fortunate enough myself to have never had to undergo chemo or radiation ,however have witnessed a few family members undergo these procedures and your are right ..never a peep or a complaint from any of them ..ever.
Possibly this...once a person is faced with these dramatic treatments for the most part they are in "life saving mode" meaning a last ditch method to try and prolong life.... To them it seems the will to live is their only focus ...and the pain and suffering they sometimes go through to achieve this takes a back seat.
I wish for peace and comfort to anyone who goes through that struggle...
Just my thoughts..
Will
Possibly this...once a person is faced with these dramatic treatments for the most part they are in "life saving mode" meaning a last ditch method to try and prolong life.... To them it seems the will to live is their only focus ...and the pain and suffering they sometimes go through to achieve this takes a back seat.
I wish for peace and comfort to anyone who goes through that struggle...
Just my thoughts..
Will
After reading your post again..I see I really didn"t reply to the question you asked... I apologize.... got side tracked somewhat
Best..
Will
Best..
Will
NO will I think you got it exactly right I thought all the exact same things.
From what people I have known on chemo go through - it seems all hepc treatments are damn easy the thing is I dont think people REALLY see it as 'saving their lives' as chemo would do for cancer. I doubt faced with stage 3 cancer someone would be so anti-interferon, but hcv patients dont realize how easily they could develop HCC and have cancer themselves if they dont beat the disease.
From what people I have known on chemo go through - it seems all hepc treatments are damn easy the thing is I dont think people REALLY see it as 'saving their lives' as chemo would do for cancer. I doubt faced with stage 3 cancer someone would be so anti-interferon, but hcv patients dont realize how easily they could develop HCC and have cancer themselves if they dont beat the disease.
PS I never see you complain Hawkie, in fact I believe you are one of the few folks who understand exactly how important it is to kill this disease regardless of what it is you have to do!!!!
I agree.
People don't take HCV as seriously as cancer patients take cancer.
I wouldn't call the complainers crybabies though, because - let's face it - treatment is no picnic.
People don't take HCV as seriously as cancer patients take cancer.
I wouldn't call the complainers crybabies though, because - let's face it - treatment is no picnic.
I just received this from someone who wishes not to post, but had a message hoping perhaps we would understand better.
"Please post and enlighten Orphaned Hawk that people doing chemo and radiation do not have the energy or the strength to complain. They are using everything they have to survive the treatment. There's nothing left for internet forums or bitching or whining."
"Please post and enlighten Orphaned Hawk that people doing chemo and radiation do not have the energy or the strength to complain. They are using everything they have to survive the treatment. There's nothing left for internet forums or bitching or whining."
Hmmm. I posted this as something someone else wrote to me in this mornings email.
I thought it was an interesting topic worth discussion.
My friends who've had cancer, including one of my closest who died of it just a year ago, went through chemo.
The one who survived is happy to be alive but the question of why chemo? why radiation? never arose.
Why isn't there research into better cancer treatments?
My thought about the difference may come from the mental side effects of interferon as found on the web site o:f irritation, depression, etc.
To the coward who thinks they have to write via nygirl to me:
It is unlikely a coward can enlighten one who is fearless.
Enlighten thyself.
I came close to dying from ESLD.
According to my surgeon I had 6 weeks of life left in me before my tp.
I know what its like to spend more time prone, exhausted wasting away.
My friend with the tumor undergoing chemo, and I spoke on the phone and commiserated. While I recovered post tp, her cancer returned aggressively.
The great thing is now, I fear not death. I've looked my own mortality in the eye.
NYgirl: In the future tell that chicken to write to me herself.
I thought it was an interesting topic worth discussion.
My friends who've had cancer, including one of my closest who died of it just a year ago, went through chemo.
The one who survived is happy to be alive but the question of why chemo? why radiation? never arose.
Why isn't there research into better cancer treatments?
My thought about the difference may come from the mental side effects of interferon as found on the web site o:f irritation, depression, etc.
To the coward who thinks they have to write via nygirl to me:
It is unlikely a coward can enlighten one who is fearless.
Enlighten thyself.
I came close to dying from ESLD.
According to my surgeon I had 6 weeks of life left in me before my tp.
I know what its like to spend more time prone, exhausted wasting away.
My friend with the tumor undergoing chemo, and I spoke on the phone and commiserated. While I recovered post tp, her cancer returned aggressively.
The great thing is now, I fear not death. I've looked my own mortality in the eye.
NYgirl: In the future tell that chicken to write to me herself.
For the same reason ugly chicks look good at 2AM. Last chance. Hail Mary.
Diagnosed with cirrhosis I had little trouble getting through tx. And I've occasionally considered chewing off my arm in the morning.
Diagnosed with cirrhosis I had little trouble getting through tx. And I've occasionally considered chewing off my arm in the morning.
Will, There is no need to apologize to me ever for digressing besides I started this just as food for thought, it sure got me thinking when I read it this morning.
Mike: I think you may have it right. Although many people act crazy when they hear they have hep C, they don't immediately think of death.
I wonder if the fact that cancer is such an old accepted disease while hep C is relatively new, and still kept in the dark, has anything to do with it, or not.
Mike: I think you may have it right. Although many people act crazy when they hear they have hep C, they don't immediately think of death.
I wonder if the fact that cancer is such an old accepted disease while hep C is relatively new, and still kept in the dark, has anything to do with it, or not.
I think the largest difference is the acceptance of mortality. For most folks treating hcv, it's not a life or death choice... suffering with treatment often feels "nastier" than suffering with the disease. For most folks diagnosed with cancer, it's a life or death decision to do chemo, radiation, etc. or not; suffering with cancer treatment often feels "better" than succumbing to the disease.
My instincts incline me to guess that you probably complained less about transplant than you do about treatment :).
My instincts incline me to guess that you probably complained less about transplant than you do about treatment :).
I kept in touch with a forum member after they'd cleared HVC and they, within the year, had to do chemo. A comment made from her may shed a little light in that there is a lot of money, fund-raising, extra support and social acceptance around chemo for cancer, and cancer has affected more people so more people are willing to be supportive, financially or other ways.
Reading her blog, there was absolutely no doubt that the chemo was very very hard, and I can't comment about the comparison. But certainly, many folk with HCV on this forum alone are facing a life or death situation and certainly those who have researched know it.
There is a stigma still with HCV - there is not the same level of sympathy, or comprehension of what we're facing when we treat. God knows, who of us here would've known what we were facing without this forum, and, of course, the differing stages of HCV complicate it.
GoofyDad - there's no such thing as an ugly chick in a happy hen house; I hope you don't wake up one morning minus an arm :-).
Reading her blog, there was absolutely no doubt that the chemo was very very hard, and I can't comment about the comparison. But certainly, many folk with HCV on this forum alone are facing a life or death situation and certainly those who have researched know it.
There is a stigma still with HCV - there is not the same level of sympathy, or comprehension of what we're facing when we treat. God knows, who of us here would've known what we were facing without this forum, and, of course, the differing stages of HCV complicate it.
GoofyDad - there's no such thing as an ugly chick in a happy hen house; I hope you don't wake up one morning minus an arm :-).
AND.... (lol), on the forum, at least, I don't think it's complaining; it's asking for help and understanding - it's perhaps a little easier for a chemo patient to get that - more health professionals are up to date with cancer treatments than with HCV.
My dad did both chemo and radiation before he died of cancer, radiation was a walk in the park compared to the chemo, he really felt he could beat the odds. I think that would be pretty common in people. If they didn't have that hope they would never do it....... He was so sick from the chemo he didn't even want to talk on the phone let alone mess with the internet
I dont think they meant to insult or belittle you in any way, just they were saying on chemo they were too sick to even think of getting on the internet. From what i have seen of some chemo's (and some are stronger than others) if you are going through that and radiation I would imagine it would take all your energy just to keep your peace of mind.
I hope to never find out and make an honest comparison personally, I dont think even after 72 weeks of dd'ing riba and inf (sometimes) that I could handle chemo (but I guess you do what you have to do and try and manage it with as much dignity as possible...which in my case would be very, very little).
Deb
I hope to never find out and make an honest comparison personally, I dont think even after 72 weeks of dd'ing riba and inf (sometimes) that I could handle chemo (but I guess you do what you have to do and try and manage it with as much dignity as possible...which in my case would be very, very little).
Deb
How come so many cancer patients are put on chemo when the docs know the probability of a good outcome is zilch? Because a person with cancer needs HOPE and treatment gives them that in many cases. And attitude is an integral part of the equation.
Why do so many on HCV tx complain - we don't feel like we are in a burning building (esld excepted) with the only hope being that of jumping out the window...so we look for a more comfortable egress.
Why do so many on HCV tx complain - we don't feel like we are in a burning building (esld excepted) with the only hope being that of jumping out the window...so we look for a more comfortable egress.
Sorry to anyone who my rant about the unknown poster, offended.
Unfortunately between my riba rage and the unidentified source, I went off, having already been agitated.
Kristina: I think you make a very valid point about the acceptance of cancer.
Hep C is still the hidden epidemic.
Unfortunately between my riba rage and the unidentified source, I went off, having already been agitated.
Kristina: I think you make a very valid point about the acceptance of cancer.
Hep C is still the hidden epidemic.
I guess I will put in my 2 ¢ worth since I have done both. Not sure if it is even worth 2 ¢ actually. Not that my answer is "better" then anyone else.
First, I find it "interesting" that it appears that most people who posted are thinking about cancer as something other people have. Once a person with hepatitis C progresses to stage 4 cirrhosis they have a increased chance of developing HCC (liver cancer). Thankfully few people progress to ESLD or HCC. And with the advent of antiviral treatment even less people in the future will. Of course this is a developed nations concentric point of view. As most people that develop liver cancer in the world who have liver cancer get it because they are chronically infected by hepatitis B.
To go back to OH's original statement.
"I wonder why people get angry about a rough hep C treatment that, to date, is the only chance for a cure, but don't about chemo?"
First IMHO the statement is not true that "we" don't complain about chemo. This forum and the forum for Hepatitis C is not where people with cancer of any sort usually post about experiences with chemo. Including us or our loved ones with hepatitis C who have now developed liver cancer. There are forum for us other places were we get angry, scream, moan and cry about what we are going through. But this is not the place for us to do that. While we have been through many of the same experiences living with hepatitis C, when your doctor tells you that you have cancer, it is a moment in your life that you will never forget. There is still a association in society between cancer and death. Even though in 2012 many/most cancers are managed successfully and most survive it especially if caught in the early stages. For example; Colorectal Cancer which my mother has had recently. There is now a 90% of survival rate over five years thanks to the 40% drop in deaths since the 1970s. Or Breast Cancer which occurs mainly in women but men can also have breast cancer 9 of of 10 people who have been diagnosed with breast cancer are alive in 5 years. Of course this is due to the many wonderful advocates for breast cancer who have put the issue front and center at least in the US. Since unlike many cancers liver cancer still has a 100% mortality within only a few years if not managed properly. Again I find it curious that in all of these posts except for Eureka's, liver cancer was never even considered as "real cancer".
I don't want to say any more about the data because I don't want to take anything away from the brave people that have been through suffering and pain I can not even comprehend. My heart goes out to all who suffer. Whether it is from any cause. I try to be conscious of the way we/I divide ourselves from others just because their illness for example is from something other than hep C.
I have had my share of orthopedic cancer, hep C, cirrhosis, ESLD, and liver cancer. All I can tell you is suffering is suffering whatever the cause. And I am happy that most people will never have to experience it. Just like I don't want to experience some of the horrible things my friends have and are going through. If I had my choice I would prefer to be obvious to it all. But it is never a choice. It it what it is. So as a responsible adult I deal with it as well as I can with the help of my supportive friends and family. I am just trying to do the best I can and live by my on beliefs with as much dignity as I can muster.
We are human beings and we go through every emotion including angry about our cancer. I try (although not always succeeding) to help others that have cirrhosis, ESLD and liver cancer here. Many of them are frightened and feel alone just like all of us when we first were diagnosed with hep C. We knew it wasn't a good thing to have hep C, but we didn't know how serious it could be. As for being diagnosed with cancer my experience both times and every time they find a new tumor in my liver is my gut feeling of dread and then the shock comes over me. Before I can ever even think about what has happened. It is a feeling before it is a thought. And it is not just my experience. I have met many people with cancers and they have all talked about that same feeling of dread when they first find out.
Sorry to go on tangents...We don't accept our cancers and suck it up and say doc I want chemo hit me up ASAP. No that is not reality. We are just like you. We pretend is can't be true, we say why me? We beg, plead, cry and a million other things but in the end many, not all, decide we want to live and if we have to suffer in the short term (chemo)for a chance of surviving then it is worth doing. It ain't fun. It is not something a person would choose to do. But when it comes down to life and death many thing look different when you are there. We unfortunately have no other options. We tied whatever we could first, and failed before we choose the chemo. It is usually our last hope. It is either chemo or death. For myself it is not really choice. I still have the will to live. And if I have to walk through hell to live so be it.
So I hope someone will get what I am saying. This is only my opinion based on my own experience. I defer to Eureka to speak for herself and must say she and her husband some of the most amazing people I have ever known in my life. And I can only feel lucky to ever have known them. There are positive things about having cancer...though I don't recommend having a potentially fatal cancer in order to appreciate the beauty of each minute of life and all the wonderful and all the wonderful caring people that have supported me along the way.
And of course you, Orpanedhawk, are an amazing person yourself. A hero in my book. What you have been through I can only imagine and actually I can not imagine... but I feel for you, feel empathy, care for you and admire you. And now you are taking on hep C again and beating it. How amazing is that? Give yourself some appreciation and hugs for all you have accomplish. Not everyone can do what you have and are doing. You didn't have a transplant because you wanted to. You had too. To continue living. Just like us with cancer. We do chemo because the alternative is worse. It is not a choice between good and bad. It is a choice between bad and worse. There are no other options. So we do what we have to do.
I guess this is as good of time as any to update my Medhelp status as of now. As some my know I had chemo December 12th for my liver cancer. I have received word that not only did the treatment work but it appears that my tumor is completely gone. This only happens in about 10-15% of cases. Wow it is more than I even hoped for. I am so grateful to my team of docs at UCSF. No words can express my gratitude for the care they have given me. What can I say? I don't know. but I want to hug them all and will get the chance very soon...
For all the relief and happiness I feel I was also devastated to learn that I now have another tumor in another part of my liver and will behaving another chemo treatment probably in the next few weeks. This is what we with ESLD and liver cancer call refer to as the "roller coaster" of emotions we go through living with these diseases. Just when you think you have your opponent on the ropes, a right upper cut comes out of nowhere and you find yourself down on the mat and trying to get back up to your knees before the 10 count. Hmmmm I guess I have some concept of what Muhammad Ali's opponents feel like. When he gave them the "sting like a bee.."
Hector
First, I find it "interesting" that it appears that most people who posted are thinking about cancer as something other people have. Once a person with hepatitis C progresses to stage 4 cirrhosis they have a increased chance of developing HCC (liver cancer). Thankfully few people progress to ESLD or HCC. And with the advent of antiviral treatment even less people in the future will. Of course this is a developed nations concentric point of view. As most people that develop liver cancer in the world who have liver cancer get it because they are chronically infected by hepatitis B.
To go back to OH's original statement.
"I wonder why people get angry about a rough hep C treatment that, to date, is the only chance for a cure, but don't about chemo?"
First IMHO the statement is not true that "we" don't complain about chemo. This forum and the forum for Hepatitis C is not where people with cancer of any sort usually post about experiences with chemo. Including us or our loved ones with hepatitis C who have now developed liver cancer. There are forum for us other places were we get angry, scream, moan and cry about what we are going through. But this is not the place for us to do that. While we have been through many of the same experiences living with hepatitis C, when your doctor tells you that you have cancer, it is a moment in your life that you will never forget. There is still a association in society between cancer and death. Even though in 2012 many/most cancers are managed successfully and most survive it especially if caught in the early stages. For example; Colorectal Cancer which my mother has had recently. There is now a 90% of survival rate over five years thanks to the 40% drop in deaths since the 1970s. Or Breast Cancer which occurs mainly in women but men can also have breast cancer 9 of of 10 people who have been diagnosed with breast cancer are alive in 5 years. Of course this is due to the many wonderful advocates for breast cancer who have put the issue front and center at least in the US. Since unlike many cancers liver cancer still has a 100% mortality within only a few years if not managed properly. Again I find it curious that in all of these posts except for Eureka's, liver cancer was never even considered as "real cancer".
I don't want to say any more about the data because I don't want to take anything away from the brave people that have been through suffering and pain I can not even comprehend. My heart goes out to all who suffer. Whether it is from any cause. I try to be conscious of the way we/I divide ourselves from others just because their illness for example is from something other than hep C.
I have had my share of orthopedic cancer, hep C, cirrhosis, ESLD, and liver cancer. All I can tell you is suffering is suffering whatever the cause. And I am happy that most people will never have to experience it. Just like I don't want to experience some of the horrible things my friends have and are going through. If I had my choice I would prefer to be obvious to it all. But it is never a choice. It it what it is. So as a responsible adult I deal with it as well as I can with the help of my supportive friends and family. I am just trying to do the best I can and live by my on beliefs with as much dignity as I can muster.
We are human beings and we go through every emotion including angry about our cancer. I try (although not always succeeding) to help others that have cirrhosis, ESLD and liver cancer here. Many of them are frightened and feel alone just like all of us when we first were diagnosed with hep C. We knew it wasn't a good thing to have hep C, but we didn't know how serious it could be. As for being diagnosed with cancer my experience both times and every time they find a new tumor in my liver is my gut feeling of dread and then the shock comes over me. Before I can ever even think about what has happened. It is a feeling before it is a thought. And it is not just my experience. I have met many people with cancers and they have all talked about that same feeling of dread when they first find out.
Sorry to go on tangents...We don't accept our cancers and suck it up and say doc I want chemo hit me up ASAP. No that is not reality. We are just like you. We pretend is can't be true, we say why me? We beg, plead, cry and a million other things but in the end many, not all, decide we want to live and if we have to suffer in the short term (chemo)for a chance of surviving then it is worth doing. It ain't fun. It is not something a person would choose to do. But when it comes down to life and death many thing look different when you are there. We unfortunately have no other options. We tied whatever we could first, and failed before we choose the chemo. It is usually our last hope. It is either chemo or death. For myself it is not really choice. I still have the will to live. And if I have to walk through hell to live so be it.
So I hope someone will get what I am saying. This is only my opinion based on my own experience. I defer to Eureka to speak for herself and must say she and her husband some of the most amazing people I have ever known in my life. And I can only feel lucky to ever have known them. There are positive things about having cancer...though I don't recommend having a potentially fatal cancer in order to appreciate the beauty of each minute of life and all the wonderful and all the wonderful caring people that have supported me along the way.
And of course you, Orpanedhawk, are an amazing person yourself. A hero in my book. What you have been through I can only imagine and actually I can not imagine... but I feel for you, feel empathy, care for you and admire you. And now you are taking on hep C again and beating it. How amazing is that? Give yourself some appreciation and hugs for all you have accomplish. Not everyone can do what you have and are doing. You didn't have a transplant because you wanted to. You had too. To continue living. Just like us with cancer. We do chemo because the alternative is worse. It is not a choice between good and bad. It is a choice between bad and worse. There are no other options. So we do what we have to do.
I guess this is as good of time as any to update my Medhelp status as of now. As some my know I had chemo December 12th for my liver cancer. I have received word that not only did the treatment work but it appears that my tumor is completely gone. This only happens in about 10-15% of cases. Wow it is more than I even hoped for. I am so grateful to my team of docs at UCSF. No words can express my gratitude for the care they have given me. What can I say? I don't know. but I want to hug them all and will get the chance very soon...
For all the relief and happiness I feel I was also devastated to learn that I now have another tumor in another part of my liver and will behaving another chemo treatment probably in the next few weeks. This is what we with ESLD and liver cancer call refer to as the "roller coaster" of emotions we go through living with these diseases. Just when you think you have your opponent on the ropes, a right upper cut comes out of nowhere and you find yourself down on the mat and trying to get back up to your knees before the 10 count. Hmmmm I guess I have some concept of what Muhammad Ali's opponents feel like. When he gave them the "sting like a bee.."
Hector
Congrats that your tumor is completely gone! I had no idea the stats were as abysmal as that. You beat the odds and lived to tell the tale. Your observation that with cancer the live or die dynamic is in general more prevalent than it is with HCV is a poignant one.
Hi Hawk:)
Hector,
You will rid the new tumor as well. You will!!
Sending my very best
Elaine
Hector,
You will rid the new tumor as well. You will!!
Sending my very best
Elaine
I am so very happy that your treatment has worked, Thank you for sharing that wonderful news. I have been thinking about you and wondering how you are.
Thank God, you are on this forum, you give people information, hope support all the while fighting your own battles. I really admire your strength, compassion and your willingness to share with all of us. This forum keeps me going with all the support advice suggestions. I hope this will be the last time I treat and can go on to help others here.
((()))
Hugs all around
Dee
Thank God, you are on this forum, you give people information, hope support all the while fighting your own battles. I really admire your strength, compassion and your willingness to share with all of us. This forum keeps me going with all the support advice suggestions. I hope this will be the last time I treat and can go on to help others here.
((()))
Hugs all around
Dee
Oh Hector oh Hector I'm just overwhelmed with gratitude that the chemo is working. I do believe, as always, in the amount of strength you have and that you will win this fight.
That is just the best news I have seen in a long long time and I am truly happy for you.
Congrations keep it up my friend!
deb
That is just the best news I have seen in a long long time and I am truly happy for you.
Congrations keep it up my friend!
deb
Hi I was told that the treatment we are on is chemo, chemo means chemical therapy. Was there a study done where they discovered that we complained more than people with cancer? When I was dx in 2007 I did think it was a death sentence. I treated because in my mind the alternative was death. It may not be that way for everyone, perhaps some people had no symptoms or damage so they wonder why they started tx in the first place.
I do think there is the matter of support. In my case those around me do not consider HCV to be life threatening so they almost think my tx was elective. Before joining this forum I tried to find a support group in my area and there was one. I opted to come here, not only to receive help but also to give help, maybe provide some comfort, experience etc. Perhaps the person who said this to you doesn't realize that there are many different type of cancer so that the cancer forums are spread out all over the forum whereas ours is concentrated to one place?
Interferon is used for cancer; I know a woman who after going through several different forms of chemo said that the interferon was the worst due to the mental side effects.
Speaking of mental side effects, my answer may not make much sense due to the mental side effects I am experiencing :)
I apologize if I am not clear. There are times I can not get the right words out and so then offend
Thank you for this forum, I do not think I could have done this tx alone. I have one person helping me through this tx. Thank God for him
I do think there is the matter of support. In my case those around me do not consider HCV to be life threatening so they almost think my tx was elective. Before joining this forum I tried to find a support group in my area and there was one. I opted to come here, not only to receive help but also to give help, maybe provide some comfort, experience etc. Perhaps the person who said this to you doesn't realize that there are many different type of cancer so that the cancer forums are spread out all over the forum whereas ours is concentrated to one place?
Interferon is used for cancer; I know a woman who after going through several different forms of chemo said that the interferon was the worst due to the mental side effects.
Speaking of mental side effects, my answer may not make much sense due to the mental side effects I am experiencing :)
I apologize if I am not clear. There are times I can not get the right words out and so then offend
Thank you for this forum, I do not think I could have done this tx alone. I have one person helping me through this tx. Thank God for him
You continue to amaze me. Your clarity despite your condition is impressive.
Thanks for your kind words. I've taken them to heart beginning to see there are more ways to view an experience, including my own, than my way!
As delighted as I am to know the one tumor is gone, my joy for you is tempered by the realization that you have yet another one to fight off.
Believe me I understand how tired you must feel.
I know I speak for many here when I say, we are rooting for you.
Go get 'em~
I expect to see you over expresso in North Beach in the future, with your healthy new liver and hep C free, like me:)
Thanks for your kind words. I've taken them to heart beginning to see there are more ways to view an experience, including my own, than my way!
As delighted as I am to know the one tumor is gone, my joy for you is tempered by the realization that you have yet another one to fight off.
Believe me I understand how tired you must feel.
I know I speak for many here when I say, we are rooting for you.
Go get 'em~
I expect to see you over expresso in North Beach in the future, with your healthy new liver and hep C free, like me:)
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