Stage IV - are we sending misinformation

I was diagnosed as Stage III and had 5-FU and Leukovorin for 6 months. 2 months after completing that I was found to have a tumor on my liver. So I was considered Stage IV at that point. It was removed and I was on FOLFIRI for 6 rounds. Later I was found to have 2 small nodules on my right lung which were also surgically removed. At that point I was NED and I did not have chemo again. I was told by my surgeon that it was not necessary or statistically helpful (at MD Anderson). I opted not to have chemo that time and I have been NED for over 2 years. Others do decide to have chemo in the same situation. However, this is very specific to resectable lung nodules, not for Stage IV in general....I have probably told this story before and it maybe that your friends friend is interpreting that as not having chemo, however, whether it helped me or not I did have chemo 2x prior to the lung resection.
-Susan

I think she may be confusing some of the stories are that are Stage II and III where, after removal of tumours, the person chose to forego chemo. I really don't think it is the fault of anyone writing on this board. For the most part, the stage of the cancer is the first thing mentioned, and when there is doubt, I go into the personal web pages for clarification. Everyone is doing a great job, it just would be more beneficial for the 'lurker' to get involved and ask the questions herself, in order to avoid misinformation. Just my 2 cents. Monica

i 100% agree with spoungebob, i think everyone post thier own personal battles here and what may work for one may not work for another. i dont think anyone is purposely trying to push thier treatments options on anyone else. i really beileve we all post to benefit as many people as possible. we have all traveled our own journeys with this and no two people will have the exact same outcome.

lynn

I am also 100% in agreement with Lynn and Sponge..
this is a cancer support group, not a medical advisory group, and bottom line is that the patient is ultimately responsible for their treatment decisions and the consequeces of that treatment. I have had chemo, radiation, and several alternative protocols, including some of
Emily's-(2behealed). I am still alive going on six years, and I'll never know why, but I believe that 80% of the cause of cancer is diet related, therefore I certainly wouldn't exclude diet/supplement related alternative protocols.
bud

spongebob said:

Betsy -

After a few years here on the board, I can only name one person who (proudly) proclaims to not have done chemo - that would be 2bhealed - and she was Stage III not Stage IV. She had some deeply personal reasons and carefully weighed the pros and cons of her chosen path.

I don't think that anyone here on the board actually advocates not doing chemo (not even Emily), but we do share our stories. I think that we all benefit from that - discussing alternative perspectives, what is working for someone, and revelling in each others' success stories. Win-Win.

Unfortunately, some people hear/see/read what they want. If they are afraid of chemo to start with and then see someone discussing not doing chemo, doing it in conjunction with naturopathic treatments or doing it until they feel compelled to quit they may well decide that = no need for chemo.

One's decision to do or not do chemo is deeply personal and should be discussed candidly with their medical team, family, and any other contributing/affected party. I hope that someone isn't making a life and death decision based upon personal anecdotes gleaned from a discussion board. With that in mind, I don't think we should walk/type on eggshells here because someone who might be lurking might do something foolish based on their erroneous interpretation of what we're talking about.

If the "lurker" is out there, we'd love to engage you in a discussion! No need to be anonymous, we're all friends here!!

Cheers

- Bob

I also hope the "lurker" keeps lurking or even better, post. But to be honest, I wouldn't, not after being told I "may not be too bright".

If you are out there, I would be happy to talk to you about all of this. Read my personal web page here and you will see why.

Lisa P.

PS Some of you will be pleased to know I will not get engaged in any other chemo vs. no chemo threads due to the high emotions they seem to invoke. I will funnel all my comments by personal emails going forward.

Betsydoglover said:

Lisa and all -

I am sorry and apologize to everyone. I want to help, but clearly don't know how, so I need to think long and hard about this.

You've all been a big help to me and perhaps in the future I can help some newbies. But I guess I need to get my head straight first.

Betsy

I don't agree that you don't know how to help. You've helped me many times.

Hi All!

I know for a fact that I am always clear on sharing my Staging with my testimony. I did have lymph involvement but thankfully no organs were involved.

Sponger is right on. And I think PGL makes a good point in reminding us about the distinction between alternative and complementary. I only did alternatives after my surgery to remove my tumor. I like to give people hope that they can make choices and empower themselves in making that decision based on knowledge and not fear (but having said that, chemo scared me because of what I saw it do to my 3 family members).

One of the very first resources I consulted was Dr. Ralph Moss who is formerly a researcher with Memorial Sloan-Kettering. He now heads up their Complementary Medicine (www.cancerdecisions.com). I sent away for his very thick and expensive comprehensive guide after reading his eye-opening book, "Questioning Chemotherapy" which I think is a good reference for obvious reasons.

But since I am late to this discussion it sounds like it is already pretty well figured out. Just thought I would clarify anything for anyone who may have confused my being a Stage 3 No Chemo with a Stage 4 on here.

I am pretty sure that I also stress that just because I did not do any chemo does not mean I didn't do anything. I did a TON! Whew!

:-)

And I am happy to share with anyone just what I did. But as someone on here has already stated.....what works for one person may be different for another.

You all are awesome and I love ya!

Semi-colons ROCK!

peace, emily who has been terribly busy with her 5 kids and not on here much.......miss ya!