Ovarian cancer and brain metastases

evertheoptimist

Tethys41 said:

Appreciation for information
Ever,
I can't speak for everyone here, but I deeply appreciate the information Greg regularly posts here. Just as with the information my doctor shares with me, if I have a question regarding Greg's information, I will ask him about it. If I'm still not comfortable with it, I will do further research. I have seen your posts over on the Uterine cancer board. I spent a few short weeks posting over there until the confrontational, "I'm right/you're wrong" attitude discouraged me from continuing to visit over there. Not saying you're one oof them. As with any member here on the Ovarian cancer board, feel free to ask questions, but please do not make this into an all or nothing debate. People on the Uterine board miss out on a lot of beneficial information that is out there because a few members are contrary and combative. Please do not discourage our helpful resources on this board.

tethy,
If anything, on the
tethy,

If anything, on the uterine board, I posted a reply defending Greg when some snarky posters asked him why he is posting all this, to inform us or scare us. I have done that in other boards too where greg provides a lot of information and some odious posters came up with unpleasant responses to his posts. I do believe he is a very valuable source. I correspond with him and collaborate with him in many interesting discussion threads.

I believe my reply was measured and reasoned and added value to this discussion. The fact that I challenged some of statements should NOT be regarded as shutting him up. As long as discussion is civil and based on logic, chastising posters for challenging other's claim is just as bad as coming up with snarky, dismissive replies. He was going in the direction of dismissing taxol as a meaningful therapeutic agent, and I challenged that with a very well grounded logic. I think I enriched the discussion by pointing out the potential that Taxol has a valid position as a therapeutic agent.

Just as you mentioned in your post, please do not discourage people from sharing thoughtful and well laid out logic. If I had used uncivil language and unfounded logic, you would have every right to censure me. Since this is NOT the case, you should not assume the position to discourage people from contributing their well thought out opinions. when this type of censorship proliferates, it lowers the quality of discussion.

gdpawel

evertheoptimist said:

tethy,
If anything, on the
tethy,

If anything, on the uterine board, I posted a reply defending Greg when some snarky posters asked him why he is posting all this, to inform us or scare us. I have done that in other boards too where greg provides a lot of information and some odious posters came up with unpleasant responses to his posts. I do believe he is a very valuable source. I correspond with him and collaborate with him in many interesting discussion threads.

I believe my reply was measured and reasoned and added value to this discussion. The fact that I challenged some of statements should NOT be regarded as shutting him up. As long as discussion is civil and based on logic, chastising posters for challenging other's claim is just as bad as coming up with snarky, dismissive replies. He was going in the direction of dismissing taxol as a meaningful therapeutic agent, and I challenged that with a very well grounded logic. I think I enriched the discussion by pointing out the potential that Taxol has a valid position as a therapeutic agent.

Just as you mentioned in your post, please do not discourage people from sharing thoughtful and well laid out logic. If I had used uncivil language and unfounded logic, you would have every right to censure me. Since this is NOT the case, you should not assume the position to discourage people from contributing their well thought out opinions. when this type of censorship proliferates, it lowers the quality of discussion.

Just a little banter
There is nothing really wrong with a little bantering tone in discussion forums. The playful and friendly exchange of teasing remarks. They are not takened seriously. It is all in the art of forensics, debating, speech and argumentation. I learn just as much (if not more) from thought-provoking questions on boards. You'd be surprised how much you can pick up. There is nothing wrong with being challenged.

Major health care issues are discussed on blogs and discussion boards more extensively than they could ever be discussed in academic articles. The ability of readers to leave comments in an interactive format is probably the most important part of most blogs and discussion boards. The interactive format allows rapid responses to medical and health care issues which provides valuable feedback and commentary not available through traditional media.

There is one thing that really annoys me on the CSN board, that is the software program. I see what "slow as molasses in january" means! It has a lot to be desired.

leesag

Tethys41 said:

Currently NED
Leesa,
I am currently NED, but am practicing the same lifestyle guidelines as those who do control their tumors, in order to stay NED as long as possible.

Congratulations
Congratulations on being NED! May you continue to enjoy the dance for the next several decades (at least a half dozen!) I, too, am NED at the moment-thanks to my Gyn/Onc's surgery, my Med/Onc's chemo, my Neurosurgeon's brain surgery, and my Radiation/Onc's wbr, and Gamma Knife.

And lest I forget, my faith that God has a plan for me and my job isn't done by a long shot!

Through it all, I drank red wine and ate chocolate without regret or apologies!

Cheers!

Leesa

Hissy_Fitz

leesag said:

Congratulations
Congratulations on being NED! May you continue to enjoy the dance for the next several decades (at least a half dozen!) I, too, am NED at the moment-thanks to my Gyn/Onc's surgery, my Med/Onc's chemo, my Neurosurgeon's brain surgery, and my Radiation/Onc's wbr, and Gamma Knife.

And lest I forget, my faith that God has a plan for me and my job isn't done by a long shot!

Through it all, I drank red wine and ate chocolate without regret or apologies!

Cheers!

Leesa

I have been NED officially
I have been NED officially for 19 months - probably NED for a couple of additional months. I would be really, really pissed if I gave up alcohol, sugar, dairy, red meat and God knows what else, only to recur anyway. So I've decided not to take the chance.

Carlene

Tethys41

leesag said:

Congratulations
Congratulations on being NED! May you continue to enjoy the dance for the next several decades (at least a half dozen!) I, too, am NED at the moment-thanks to my Gyn/Onc's surgery, my Med/Onc's chemo, my Neurosurgeon's brain surgery, and my Radiation/Onc's wbr, and Gamma Knife.

And lest I forget, my faith that God has a plan for me and my job isn't done by a long shot!

Through it all, I drank red wine and ate chocolate without regret or apologies!

Cheers!

Leesa

It's a personal choice
Leesa, I have kept up with the posts related to your journey and I hold you in very high esteem. I think we all need to do whatever we are most comfortable doing. That doesn't make any of us wrong. I am so happy that your treatments and surgeries have done you well, and deeply hope they continue to do so.

Carlene, I had to laugh when I read your response because I think in just the opposite way. If I had a recurrance and had not changed my diet and lifestyle, I'd be kicking myself, thinking that if I had only done something more, maybe I would have prevented it. I feel that the changes I've made are one's I really knew I should have made before my diagnosis, but never had the motivation. I won't kid you, it was a bit challenging kicking the sugar and gluten habit. But now, I don't miss them at all.

Stay healthy

california_artist

gdpawel said:

Just a little banter
There is nothing really wrong with a little bantering tone in discussion forums. The playful and friendly exchange of teasing remarks. They are not takened seriously. It is all in the art of forensics, debating, speech and argumentation. I learn just as much (if not more) from thought-provoking questions on boards. You'd be surprised how much you can pick up. There is nothing wrong with being challenged.

Major health care issues are discussed on blogs and discussion boards more extensively than they could ever be discussed in academic articles. The ability of readers to leave comments in an interactive format is probably the most important part of most blogs and discussion boards. The interactive format allows rapid responses to medical and health care issues which provides valuable feedback and commentary not available through traditional media.

There is one thing that really annoys me on the CSN board, that is the software program. I see what "slow as molasses in january" means! It has a lot to be desired.

Greg and friendly banter
I am from NYC originally, and the most fun one could have was a lively opinionated discussion in a coffee place in the Village, among friends, sometimes people at a neighboring table would chime in with their thoughts too. Things would get loud as people were passionate, there could even be such high brow comments as “your mother,” but in the end we all hugged with a see you tomorrow. so I just love the give and take on these boards, and never understand when defensiveness sneaks in, although there was one time when I did get all huffy and puffy, which I regret tremendously, as that is not my way. I am in fact an incredibly friendly, funny, joke making sort who loves an intellectual discussion. I have learned so much from all of you. So, to all of you, I'm all for more of the same. Hope we keep having fun and learning all we can from each other. The more we know, the more rational the decision we can make.

Love and hugs to go around, : ~ )- and yes, I did make a stupid smiley face. Good Grief!

claudia

daisy366

california_artist said:

Greg and friendly banter
I am from NYC originally, and the most fun one could have was a lively opinionated discussion in a coffee place in the Village, among friends, sometimes people at a neighboring table would chime in with their thoughts too. Things would get loud as people were passionate, there could even be such high brow comments as “your mother,” but in the end we all hugged with a see you tomorrow. so I just love the give and take on these boards, and never understand when defensiveness sneaks in, although there was one time when I did get all huffy and puffy, which I regret tremendously, as that is not my way. I am in fact an incredibly friendly, funny, joke making sort who loves an intellectual discussion. I have learned so much from all of you. So, to all of you, I'm all for more of the same. Hope we keep having fun and learning all we can from each other. The more we know, the more rational the decision we can make.

Love and hugs to go around, : ~ )- and yes, I did make a stupid smiley face. Good Grief!

claudia

Greg and Optimist
Greg, I am happy to read that you are open to discussion and not easily offended. I am there with you - to discuss and learn - and question. Questions are good because that's how we learn and give deeper meaning to things.

I'm sorry, optimist, that you took my response as snarky (I love that word). I try not to be. I wanted more information, is all. Life is too short and precious. I agree with Claudia and Greg, that we should continue on with civil conversation, unafraid.

My best to all here, Mary Ann

JoAnnDK

daisy366 said:

Greg and Optimist
Greg, I am happy to read that you are open to discussion and not easily offended. I am there with you - to discuss and learn - and question. Questions are good because that's how we learn and give deeper meaning to things.

I'm sorry, optimist, that you took my response as snarky (I love that word). I try not to be. I wanted more information, is all. Life is too short and precious. I agree with Claudia and Greg, that we should continue on with civil conversation, unafraid.

My best to all here, Mary Ann

CARLENE !!!!
I loved your post! You are too funny. I too would be really pissed if I gave all that stuff up for naught.

I have cut back on red meat (a long time ago) and meat in general now, but still eat it. And pasta and rice. After all, the anti-inflamation diets all "allow" fish and whole grains. I just add a bit to that.....an occasional dessert and definitely wine.

JoAnn

JoAnnDK

JoAnnDK said:

CARLENE !!!!
I loved your post! You are too funny. I too would be really pissed if I gave all that stuff up for naught.

I have cut back on red meat (a long time ago) and meat in general now, but still eat it. And pasta and rice. After all, the anti-inflamation diets all "allow" fish and whole grains. I just add a bit to that.....an occasional dessert and definitely wine.

JoAnn

Snarky
Is it "snarky" to post something that offers a correction to something else that was posted? For example, if I posted that "red meat is good for cancer patients" and someone corrected me, would that be "snarky" ????

At any rate, go ahead and consider this snarky or helpful...it is everyone's choice. This is a post of mine from the uterine cancer board where I wrote:

MedPage Today

Greg, MedPageToday should be ashamed of itself for this headline:

ASTRO: Brain Metastases Common in Ovarian Cancer

.....when this is not true at all and was extrapolated from ONE abstract of an article that has not yet even been peer-reviewed OR published in a medical journal.

This was one study of 78 women ---- conducted over 27 years. How many cases of ovarian cancer were seen at Sloan Kettering in those 27 years? I would bet it was thousands, yet this so-called study focused on 78.

So the headline should rightly say "Brain Metastases Common in 78 Ovarian Cancer Patients in 27 years". But this would not have garnered nearly as much attention, would it?

I have long noticed this tendency of MedPage to sensationalize in its headlines. Shame on them.

Here is a similar study done by/at MD Anderson which is NOT misleading because it states the number of patients there over the years who had ovarian cancer (8,225) versus the number studied (72).

http://www.ncbi.nlm.nih.gov/pubmed/15015663

This is even more accurate: http://theoncologist.alphamedpress.org/content/11/3/252.full

Background. Brain metastases from epithelial ovarian cancer (EOC) are rare. This report is based on a review of the literature.

Brain metastases in ovarian cancer are RARE (not common)......emphasis mine.

I was a researcher for a long time and always remember a class I had in college....subtitled "How to Lie With Statistics". One has to be so careful to check out all these sensationalist articles for validity.

JoAnn

LaundryQueen

JoAnnDK said:

Snarky
Is it "snarky" to post something that offers a correction to something else that was posted? For example, if I posted that "red meat is good for cancer patients" and someone corrected me, would that be "snarky" ????

At any rate, go ahead and consider this snarky or helpful...it is everyone's choice. This is a post of mine from the uterine cancer board where I wrote:

MedPage Today

Greg, MedPageToday should be ashamed of itself for this headline:

ASTRO: Brain Metastases Common in Ovarian Cancer

.....when this is not true at all and was extrapolated from ONE abstract of an article that has not yet even been peer-reviewed OR published in a medical journal.

This was one study of 78 women ---- conducted over 27 years. How many cases of ovarian cancer were seen at Sloan Kettering in those 27 years? I would bet it was thousands, yet this so-called study focused on 78.

So the headline should rightly say "Brain Metastases Common in 78 Ovarian Cancer Patients in 27 years". But this would not have garnered nearly as much attention, would it?

I have long noticed this tendency of MedPage to sensationalize in its headlines. Shame on them.

Here is a similar study done by/at MD Anderson which is NOT misleading because it states the number of patients there over the years who had ovarian cancer (8,225) versus the number studied (72).

http://www.ncbi.nlm.nih.gov/pubmed/15015663

This is even more accurate: http://theoncologist.alphamedpress.org/content/11/3/252.full

Background. Brain metastases from epithelial ovarian cancer (EOC) are rare. This report is based on a review of the literature.

Brain metastases in ovarian cancer are RARE (not common)......emphasis mine.

I was a researcher for a long time and always remember a class I had in college....subtitled "How to Lie With Statistics". One has to be so careful to check out all these sensationalist articles for validity.

JoAnn

Statistics
Ugh! If you are going to be that way about statistics, JoAnn, then how can you trust ANY research? I agree with you about how data can be manipulated--there is a lot of data being "massaged" every day. I think it's important to sift thru as much information as one can and make the best informed decision possible.

I believe that there is an art to practicing medicine as well as a science--I think less than 50% of what is practiced is evidence based. There's an expression that goes something like this: Change happens in medicine one funeral at a time (the funeral is in reference to the death of the physician rather than the patient). In 100 years, the treatment of cancer will be very different that it is today of that I feel certain.

JoAnnDK

LaundryQueen said:

Statistics
Ugh! If you are going to be that way about statistics, JoAnn, then how can you trust ANY research? I agree with you about how data can be manipulated--there is a lot of data being "massaged" every day. I think it's important to sift thru as much information as one can and make the best informed decision possible.

I believe that there is an art to practicing medicine as well as a science--I think less than 50% of what is practiced is evidence based. There's an expression that goes something like this: Change happens in medicine one funeral at a time (the funeral is in reference to the death of the physician rather than the patient). In 100 years, the treatment of cancer will be very different that it is today of that I feel certain.

Yes to research
Yes, I can trust research, but ONE study, misrepresented by MedPage Today, is not one I will believe in.

Like you, I believe in sifting through information. One has to look at the information, the source, etc. I am so disappointed in MedPage Today.....like I said, they should be ashamed. That headline is so deceiving. But then again, if one looks at googled results and trusts everything one sees, many of those results are deceptive.

gdpawel

JoAnnDK said:

Yes to research
Yes, I can trust research, but ONE study, misrepresented by MedPage Today, is not one I will believe in.

Like you, I believe in sifting through information. One has to look at the information, the source, etc. I am so disappointed in MedPage Today.....like I said, they should be ashamed. That headline is so deceiving. But then again, if one looks at googled results and trusts everything one sees, many of those results are deceptive.

Brain metastasis
I've been following the taxane dissemination and brain metastasis reasearch for ten years, ever since I discovered cell function analysis in 2001. Every once in awhile more and more data come out. It's just that the data hits across various tumor types. http://cancerfocus.org/forum/showthread.php?t=2871

An article in Gynecologic Oncology (Volume 92, Issue 3, March 2004, Pages 978-980) by John P. Micha, et al, Gynecologic Oncology Associates, Hoag Memorial Hospital Cancer Center, Newport Beach, CA states that brain metastases resulting from primary ovarian cancer are rare, however, there have been recent studies suggesting an increased incidence of brain metastases (PubMed PMID: 14984970).

Greg