CSN Login
Members Online: 7

You are here

answer to my erbitux posts

oneagleswings
Posts: 425
Joined: Jan 2005

Thank you to all who posted encouraging comments...and to the "negative nellies" including and especially Emily...if you have have exhausted all other options..(and trust me- stage 3 will ALWAYS turn into stage 4..(1-5-7-10 years or more- check the stats) and at some point you will grasp at a last ditch chemo option) you will be grateful for the availability of a last chance drug..I really just wanted to see how those who were on erbitux were coping and if they also were given 5FU in addition to iriotecan...we have done and are doing the alternative route (and if it worked 100% I am sure alot more people would be on it making the naturopaths as wealthy as the oncologists)...don't mean to sound negative and I admire the results that "scouty" has had but sadly she is in the minority..I love her AND at least SHE does not discourage others from chemo since in fact she was on oxaliplatin which perhaps gave her the leg up she needed to continue with an alternative plan.
Watching my husband die before my eyes breaks my heart...to those who are in my place know what I mean..and to the others may God not grant you that knowledge.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

I know sometimes it is frustrating to hear all the different opinions on this board, especially when they seem discouraging, but I learned to accept that this board is mostly about everyone's 'personal' experience and therefore the opinions may seem one-sided. The beauty about it is that you get to hear all sides. Check out a posting on chemo vs no chemo and you'll see the lively discussions that ensue. All you can do is listen (or read in this case) and make the right decision for your HUSBAND and you.

I agree that you need to try to beat this beast to the ground, and your husband needs to do what his body allows him to do.

I haven't personally tried Erbitux, but maybe in a few months your husband can give the forum a positive report. God bless. Monica

hopefulone
Posts: 1048
Joined: Jan 2007

Hi. My husband dx stage IV with liver mets. We haven't started chemo yet , but will soon. He's recovering from colon resection and just had chemo port put in etc. We are scared,(fear of the unknown is always worse) but determined and I agree with you that you try all options that are available. What works for one may not for another and vice versa. Your husband may not experience the same side effects or at least to the same degree as others. You won't know if he doesn't try either. No matter what decision you and your spouse make, it's yours and it will be the right decision for you both. You will both be in my prayers. God Bless.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

FORUM: " A public meeting place for open discussion, a medium of open discussion and voicing of ideas.."
Although absolutes are possible candidates for discussion in such an open atmosphere, they leave little room for discussion.. each individual gives and takes what they wish here, and they choose to do so..and are responsible for that choice. Everything started with a minority, and
Emily and Scouty are part of a fast growing minority that the majority is beginning to listen
to..not too long ago,(before patent medicines) we all depended upon the leaves and herbs which are the basis for all medications today. Our medicine is young and naive compared to Traditional Chinese Medicine, which interestingly is showing up in our major cancer centers.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

You know, I have been a member of this forum for a long time too and I am also a Stage IV survivor. Emily is not the only one to be NED for over 2 years. I also did not have chemo following my last surgery, however, I was NED at that time. I am not a big fan of chemo but the thing is that each situation here is different.
Comparing even two cases that are virtually identical is nearly impossible because invariably there will be two different outcomes....However, I have to STRONGLY disagree with your statement that Stage 3 will always turn to Stage IV, even 10 years later. That is simply not true. After 2 years the chance of recurrence drops dramatically, and as time goes on the chance continues to decrease. After 5 years the chance is exceedingly low. To say that Emily will have a recurrence is proposterous and it makes me very angry because it is simply not true. I don't know your husbands situation - but it is not Emilys. I don't really care what she said about Erbitux, it is very bad karma on your part to imply that she will have a recurrence. I assure you she will NOT! BTW, she was in your situation, she saw her sister die before her eyes, so you might consider what she has to say with a little more openmindedness and respect.
-Susan

stage4mom
Posts: 22
Joined: Aug 2006

I agree with Susan. I too strongly disagree with your statement that stage 3 will always turn in to stage IV at some point in time. If you post something like that, then you need to back it up with some strong supporting evidence, which, of course, you cannot do because it simply is not true. And as for your other comments, they were totally out of line, in my opinion.

After my son was diagnosed with stage IV colon cancer in June of 2006, I did little else but read and research, trying to learn anything and everything I could about colon cancer and available treatments. When I discovered this board, I read through every single thread (over 35,000 at the time) and found this to be one of the best places for information and support. What I really liked was the lack of negativity here, and the people were all warm and friendly, often humorous, and very knowledgeable. Your post has no value whatsoever, and in fact, I find it very offensive.

Emily (2bhealed)is an amazing person, and she is a gift to us all with her encouragment and optimism, and her story alone is an inspiration to all of us. She NEVER forces her views on anyone, instead she provides information to let people know there are other ways to treat cancer, methods that are non-toxic to the body, methods that encourage long-lasting results, methods that oftentimes result, not in a temporary remission, but in a real CURE for a cancer patient. If you don't believe that is possible, then I suggest you do some research yourself as I have. But that is not the point of my post. My point is that I have never seen Emily tell anyone not to do chemo or that her way is the only way. She shares her story and that alone speaks volumes, but she never forces anything on anyone, and she certainly does not deserve your negative comments.

Since my son was diagnosed eight months ago, I have visited this site every single day, and even though I rarely post, I could not sit here and not speak up on behalf of Emily who takes the time to help so many of us, and I for one am truly grateful for everything she has done.

Jane

Subscribe to Comments for "answer to my erbitux posts"