ENDO Messages for August, 1998: Re: National Lupron Victims network

Re: National Lupron Victims network

From: Chandra (anonymous@obgyn.net)
Sun Aug 30 12:10:22 1998

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All:

Explain something to me: Why is a dentist (Dr. Linda Abend) making the Lupron decision for everyone? It is my understanding that she has never had Endo, and she is definately not an Ob-Gyn. Why does she feel like she has such knowledge on this subject?

I don't understand.

Chandra Manassas, VA mrscmartin@hotmail.com

----Original Message Follows---- Date: Sat, 29 Aug 1998 16:35:15 -0500 Reply-To: anonymous@obgyn.net From: Dragon <anonymous@obgyn.net> To: Multiple recipients of list <anonymous@obgyn.net> Subject: Re: National Lupron Victims network-- Marla

I'm gonna snip the stuff I'm not directly responding too because otherwise this thing would be HUGE. I do not intend to take anything out of context.

1. I am just now going through my mail after camping (see an earlier post) so if this has been re-spoken on agan, please frogive my repetetion, I'm trying to go through in a semi-orderly fashion.

>One thing first - in reference to our differing reactions to
medications. >I agree. There are many biological differences between people, and for
>whatever reason, many react differently to Lupron than others. Some do
not >have reactions at all. But until we know what it is that makes type
"X" >person react devastatingly and type "Y" person not react at all, we are
>taking a gamble with our lives by taking a drug with potentially fatal
>effects. Even those who initially had no effects on Lupron have begun
to Yes, but the point we have tried continually to make to the NLVN is that it is a choice for *each individual* to make *for herself*. All evidence I have been witness to out of the NLVN is that Dr. Linda Abend (who is a *dentist* not a doctor who has anything to do with our area of problems) feels it is her right and duty to make the decision about Lupron for everyone herself. Carey was simply pointig out that many of us have expereienced Linda first hand and it was anything but pleasant. Many have found the site to be extremely one sided and many of us prefer to have someone know *both* sides of the situation. Good stories as well as the bad. Me, persnally, I can't stand the woman or what I've seen of her site but that's not something to be hashing up in here right now.

It would be wrong for me to tell all of you that you can not take vicadin because I had a horrid allergic reaction to it, wouldn't it? Yet, we didn't know ahead of time that I would have that reaction, or what would make another person have that reaction....aren't you all taking the chance of putting your lives at risk if you choose vicadin as your painreliever? Its the same thing and can be exended to any number of things...peanuts, taking a shower vs a bath, taking aspirin if you even *might* be asthmatic, etc. Linda Abend is no more right to make medical decisions for me than I am to make medical decisions for her, you or anyone else. (please note, I refer to NVLN and Linda Abend as one in the same because to me, they are)

>serious risk to consider. It cannot be compared to common household
>medicines of course, because while with Lupron, the majority of women
>suffer ill-effects from this drug, household drugs only have bad or
Really? In talking with women who have taken this drug, I have found many who would not consider the side effects they have suffered to be horrid....many would simply say annoying and uncomfortable....I do know others who say worse things and I kow others who say better things, ut I do believe the majority I have heard from would hardy consider what they went through as horrid, etc. Household drugs are found to have many more ill-effects than we ever tend to hear about....I've found out many things about NSAIDs from the experieences of my endo sisters. Makes me think twice before taking a tylenol or motrin.

>But the KEY DIFFERENCE here - in comparing chemotherapy to Lupron's
usage >(and I believe you are mistaken in saying that NLVN disapproves usage
for >men with prostate cancer) -

Nah, the impression I was given was that Linda would be happiest if they forced the stopping of the drug production for everything...but then, that's just the impression I have.

>is that chemotherapy is used in LIFE THREATENING situations.
As we tried to exlain to whats-her-face before, Endo has the potential to be life-threatening if it causes a bowel obstruction, ejtc.

>The Lupron use that almost all of us condemn is for INFERTILITY or
FIBROID >SHRINKAGE or other reproductive difficulties. No matter how emotional
we "that almost all of us condemn" Excuse me? Are you trying to tell me what is and is not right for me? Because taht's certainly how I read it.

>But to choose a drug (remember thalydamide - do you even realize how
long >that was used BEFORE all the potential side-effects were realized) as a
>health-AID, well then I feel it is the duty of everyone who believes
that >the drug is wrong, to try to spare those who consider taking it as a
>problem-solver.

You *are* saying you know what's right for me.

>
>If it had not been for the National Lupron Victims Network, I would
>not now know that the GnRH drug I had taken 6 years ago was causing
>the majority of my health problems today, and I would not be going
>for testing of my bone density, cholesterol, and other pertinent
>examinations.
>

I'm sorry you are still suffering....it's a horrid isease and non of our options are cures....we are all taking chances with whateer we choose...that's why it must be of our *own* choosing.

>While I realize that there seem to be personal difficulties going on
>between the Linda and board members, I have had good experiences when
>seeking out
>help from the NLVN, and don't begrudge Linda the need to "correct"
>postings. Also, in reference to "cut and paste," unfortunately, most
"correct" sorry, but from what I've seen that's a laugh and a half. I recently ( before my trip) asked her a Simple yes or no question about something she "cut and paste" on the other newsgroup I am on....I even asked for a regular english answer...ya know what I got? the same stupid mumbojumbo (I couldn't decipher beans out of it so I have little opinon of it) cut and pasted again and still not a straight answer. I don't call that my idea of a good experience seeking help.

>findings. I don't know her personally, but to attack her research
because >it is cut and paste, is to attack every research paper, surgeon's
report, >etc. out there, because they are ALL in fact, cut and paste.
Ohm we don't attack her research, we attack her inability to answer anything she's asked in plain english, in her own words, and anythig she does say in her own words is usually insults. (based on my experiences with her)

>>From the "corrections" I have seen her do, I think that her heart is
>in the right place. While what she has to say may be disheartening
>for some to read, it has always appeared to me that she just wants to
>make sure that the "FACTS" that are constantly flying across the
>netwaves are based on empirical evidence, not upon hearsay or
>doctor's advice (which let's be realistic here - unfortunately, these
Personally, knowing what I know about doctors' adivce, I'd rather have real life stories from patients who have experienced...I don't want Linda's "facts" anymor ethan I want the hype from the drug companies.

>But I digress. My point is that I really do believe that NLVN tries
>to make sure that we are not continually misleading each other,
>albeit a sincere and concerned effort to better each other's lives,
>and that if one person is prevented from a horrible experience, by
>way of hearing the downside before making their choice, then the
>effort has been justified.
>

I can not consider her tactics justified...I just simply Can *NOT*

>will benefit my particular situation and discard which will not. I
>believe that her concerns are real, she does empathize and understand
>and that she just wants the facts to be actual facts, as best it is
>understood to date, whether it is disheartening or not.

She does not empathise or even attempt to understand thsoe of us who I am aware have attempted to communicate to her that not everyone hasa horrid tim eon this disease. She has insulted us, and been hostile, not to mention, she will not "discuss" anything with us...she *only* insults or cuts and pastes...we woudn't mind near asmuch if se would actually discuss things wiht us.

>If it were 2 out of 3, that deemed it worthy of comment. In this
>case, I believe that Linda felt that her statements were not only
>true (based on the empirical evidence available to date), but also
>necessary to prevent further harm from befalling the potential users
>of this controversial and potentially fatal drug.

Have you stopped to think that her "I know what's best for you and you don't" way of doing "busness" may actually be doing harm rather than preventing it?

>
>I am not chastising you by any means, but simply asking you to
>consider the aforementioned points from a fellow board member.
>

Same as above, however, I am upset at the implication that you would condemn someone's use of Lupron if that person actually felt it was in their best interest. You seem to have thought the saem thing at one time, after all, you did take it. Would you have wanted a complete stranger to declare the drug evil and look down on you for considering something that *might* have helped you? I dont' want you to answer by looking back with whatyou know now..I want you to answer as you would have then...with what you knew. I believe women should be educated as possible on their condition and possible treatments...and then, if they still decide lupron could work for them, I say "go for it....if you've gotten educated, you are making the decisino you feel is best, no one ele can know better than you what your body is like."

Now, that's my $1.50 worth....I hate this subject and that's why I eyt (get) realy riled....

Now, I've probably madea horrid reputation for myself on here between this and the get oer it post I made but I believe in our right to choose what is right for ourselves and not be put down for it.

*getting off her soap box now*

Tricia

PS Thanks Carey for making the post I would have when I saw it anyway =)

--
=====================================================
= Patricia Rawski=== === prawski@emunix.emich.edu   = =================== == rawski@online.emich.edu    = ===================================================
=================== nethack addict ==================

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