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Stage IV - are we sending misinformation

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Hi all -

It's a long story and this is second hand, but a very good friend of mine met someone who has recently diagnosed CRC - Stage IV. This person has never posted on our board, but has lurked and read. My friend told me that her friend (the lurker) told her that there are "several" Stage IV patients on this board who never had chemo and are doing fine. So the lurker is seriously considering not doing any chemo.

I'm all for alternatives, but I don't actually know any Stage IV folks her who have done no chemo. This "lurker" may be not so bright - know nothing about her - but if we are giving the impression that there are many successful outcomes from Stage IV CRC without chemo we should stop. OK - Scouty, my friend, I know you are the first to say that you had chemo which got you to a point where you felt comfortable stopping. You are probably not the only one. But, I am worried that folks "out there" are saying that chemo is not needed for Stage IV cuz we have many survivors who have proved that.

Not sure where this idea came from, but wanted to share that it is apparently out there.

Betsy

AveriRN's picture
AveriRN
Posts: 61
Joined: Aug 2004

Completely agree with you, and as a St 4 myself, never having met another who didn't do chemotherapy/radiation, I would continue to educate myself before making that decision. And I would be wary of "alternative" ways except and unless there were actual "survivors" you could speak to personally. For me, I am thankful for the chemo option, I know it played a role in my remission.

Averi

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

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

katefm's picture
katefm
Posts: 112
Joined: Oct 2006

My husband is doing chemo - he's stage IV, in an erbitux vs. avastin trial. Our doctor has recommended a minimum of 6 months, after which time we're hoping for a liver resection. Chemo isn't fun, but in our situation it seems to be a necessary evil.

Maybe she's thinking of rf ablation or something like that? We're doing systemic chemo since the cancer is other places in my husband's body - not just on the liver. (Also on the abdominal wall.)

Hopefully this woman will do a little more investigation!

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

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

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

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

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

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's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

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

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Betsy -

No need to apologize - you brought-up an issue and made us aware of it. You let us know that some people may be trying to pull something out of our discussions that isn't really there. Hopefully our comments in this thread spoke to the very people you were referring to and they got the message - make that plural - messages - we put out there.

Thanks for posting.

Be well, betsy

- SpongeBob

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

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

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I totally agree with that Rodney!!!!!

Betsy, you know you are a friend of mine and still are. You only made one poor choice of words, otherwise your message was great and well intended!!!

Thank you and keep it up!!!!

Lisa P.

lynn1222
Posts: 105
Joined: Nov 2006

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

levensweg
Posts: 55
Joined: Jul 2006

I'm a stage 4 survivor. NED for 15 months now. I did chemo. At thiry three years old I didn't have to think about it much.

I did a lot of research on chemo intially, and still do from time to time. I also consulted with three different oncologists. I have never read a publication wether it be New England Journal of Medicine, Am J Surg Pathol, Pub Med, etc that didn't show results from adjuvant chemotherapy in stage 4 CC patients that were staggeringly better than a group that didn't recieve chemotherapy.

I'm not a promoter of chemotherapy persay. Chemo wasn't a walk in the park for me. Everyone is entitled to do what they want. There are always different factors for each person.

Having said this I think chemo isn't enough. I believe one needs to fight cancer with everything they have. Every resource must be used. Nutrition, exercise, protecting yourself from environmental and job related toxins and so on.

When you have cancer, it's foolish to limit your options and make assumptions.

-Lev

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

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

66Rose
Posts: 58
Joined: Dec 2006

Well I am a newbie here and I am stage II or III and said that, we are not sure of node involovement. And I am refusing post-surgery Chemo, I did Chemo and radiation before surgery, but no more now. But I think I made that clear what stage I was and I know I have said that if I was stage IV I would be first in line to get Chemo after surgery.

Becuase of my personal situation and what stage I am in and the health of my body, I am not taking Chemo, I weighed the percentages I would gain and I have made my own decision.

God Bless,

Liz

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Sometimes a distinction is made between "alternative" and "complementary" treatments, meaning by the first that the treatment replaces conventional therapy, and by the second that conventional therapy is supplemented. I've noticed on this board, and actually in this thread, that "alternative" is almost always used to mean "complementary" (if one makes the distinction). This could produce some confusion for casual readers.

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

to clarify my own comments, I meant both...

Betsydoglover's picture
Betsydoglover
Posts: 1255
Joined: Jul 2005

Thanks All - I've shared your thoughts with my friend and we both agree - her friend is terrified of chemo and is looking for any excuse not to do it. So, she hears what she wants to hear. I strongly suggested to my friend that her aquaintance post here, but apparently she doesn't want "to get involved". I've also offered to talk to her personally, but again no interest, at least right now. Hard to understand, but everyone has to make their own way - in their own time.

Thanks all for the input - I agree this is a support group, not a medical advisory group and we aren't saying the wrong things, though folks can hear whatever it is they want to hear.

Take care all,
Betsy

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

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!

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