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321 - 340 of 365 Comments Last updated Aug 21, 2013
Gail Perry

United States

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#345
Aug 1, 2012
 
Oh really Mick why do you have to make it personal? I haven't posted here in MONTHS and in you go again, starting it all up.

I'm very sorry for your mother, but your extreme over-reaction to very old posts is your problem, not mine. It's really a shame that you can't hear other sides of a topic. Did you really think that everyone on line will always agree on every little detail?

You're the one with the problem, pal. Suck it up and grow up so you can be *mature* support for your mother as she goes through this. Having been through it myself, I know it's worth it all on the other side, but she still needs you with a smile on your face, not whining about some stranger in a discussion that you weren't even a part of.

Put your big boy panties on.
Gail Perry

Conley, GA

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#347
Aug 2, 2012
 

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Oh gee, Mick the Moron, did I read your post? Sorry, it's your wife, not your mother. Then she needs your support even more.

Instead you come on line to attack someone who has been through exactly what your wife is going through (except that I was lucky; when I got of AI's my hair did grow back, although not everywhere -- or did you miss that in your need to rage at someone?)

Personally I think you need help. If YOU had a shred of sanity you wouldn't have made the first post.

Do you really think this is helping anyone? Try Wal-Mart. They sell those big-boy panties there. Stop whining and find a positive way to support your wife. You may need professional help getting to that point but I'll guarantee you you're not really doing her much good right now.

I would have been devastated if my hair hadn't grown back in, and that seemed like a possibility for a long time. I did lose all my teeth, so I did lose something as important to me as my hair.

But I'm alive, and I've learned to deal with it. The treatments for breast cancer is worth it but we women pay a very high price. I am going to complain to the moderator about you, because all you have done here is viciously attack me. You're a bully, Mick.
Choko

Pittsburgh, PA

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#348
Sep 3, 2012
 

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I just want to know what SA is going to do to compensate women for the permanent hair loss? I was not told about it. The literature I received said alopecia was temporary. I don't appreciate it...having to go around looking like a man. What....our hair loss is to be ignored? I am glad I'm alive, but if my self image is shot, or I always have to wear a wig and wonder is it going to blow off or if I am intimate or trying to be and my head is looking like a man???

I need to be compensated for the mental anguish, the inconvenience, the shame...

Does this company feel that this is not a big deal because we are WOMEN?
Gail Perry

Seminole, FL

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#349
Sep 4, 2012
 
Choko aren't you at all upset with the doctor for not telling you? It's in the literature. It isn't the drug company that didn't tell you. It's the doctor and his/her staff.
choko

Pittsburgh, PA

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#350
Nov 30, 2012
 

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Gail Perry wrote:
Choko aren't you at all upset with the doctor for not telling you? It's in the literature. It isn't the drug company that didn't tell you. It's the doctor and his/her staff.
thank you for your comment...but the literature that they quoted and used did NOT say anything about permanent hair loss. So i shouldblame them when they use the literatre that is based on the product insert??
sanofi did not disclose that fact and did not push to make it well known.they changed the info due to pressure.they still did not put it out there like that.
yes...i hope there is a class action suit against sanofi. I will be part of it. Are you bald or have thinning hair due to taxotere?
choko

Pittsburgh, PA

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#351
Nov 30, 2012
 

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choko wrote:
<quoted text>
thank you for your comment...but the literature that they quoted and used did NOT say anything about permanent hair loss. So i shouldblame them when they use the literatre that is based on the product insert??
sanofi did not disclose that fact and did not push to make it well known.they changed the info due to pressure.they still did not put it out there like that.
yes...i hope there is a class action suit against sanofi. I will be part of it. Are you bald or have thinning hair due to taxotere?
if not...dont try to silence me. I was not told, the lit did not mention permanent hair loss. Is there an MD or PhD behind your name, becuse you are talking to folks like you are the only person with any sense. Do you work for sanofi?
Gail Perry

Saint Petersburg, FL

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#352
Nov 30, 2012
 

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"
choko wrote:
<quoted text>
thank you for your comment...but the literature that they quoted and used did NOT say anything about permanent hair loss. So i shouldblame them when they use the literatre that is based on the product insert??
sanofi did not disclose that fact and did not push to make it well known.they changed the info due to pressure.they still did not put it out there like that.
yes...i hope there is a class action suit against sanofi. I will be part of it. Are you bald or have thinning hair due to taxotere?

if not...dont try to silence me. I was not told, the lit did not mention permanent hair loss. Is there an MD or PhD behind your name, becuse you are talking to folks like you are the only person with any sense. Do you work for sanofi? "

@@

No one is trying to silence you. I'm just surprised that you were given different literature than I was, that's all. Some people get on the Internet and then expect 50 million or more people to all agree with them. That's not terribly realistic.

And no, I don't work for any drug company, nor did I ever. I had Taxotere as you did. I was told -- six years ago -- that rarely, the hair loss can be permanent.

It hasn't all grown back and likely won't. but I'm alive.
Choko

Pittsburgh, PA

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#353
Nov 30, 2012
 

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I am glad you are alive...I am glad I am alive. That doesn't mean that I must be pleased with the fact of having thinned hair or women should be ok that they are bald now after receiving taxotere.
If I had been informed properly, I would have chosen another course of treatment..even if that course was longer.
I do not care if you agree with me or not. I am seeking a group of women who have a common bond and who are not trying to strong arm one another into being pleased about being misinformed...or really partially informed.
I saw that originally Ms. ledlie began the discussion and then it got real ugly with overbearing people. That's who I REALLY would like to dialog with. I mean, she had the courage to battle with Sanofi on Facebook and they had to shut it down for a minute.
I am here to get info, and lend support ...not to be browbeaten because I ain't jumping for joy and my hair is all jacked up.
For real...who on here can point me to Ms. ledlie?
Thank you...and have a good evening.
Gail Perry

Saint Petersburg, FL

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#354
Dec 1, 2012
 

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Choko wrote:
I am glad you are alive...I am glad I am alive. That doesn't mean that I must be pleased with the fact of having thinned hair or women should be ok that they are bald now after receiving taxotere.
If I had been informed properly, I would have chosen another course of treatment..even if that course was longer.
I do not care if you agree with me or not. I am seeking a group of women who have a common bond and who are not trying to strong arm one another into being pleased about being misinformed...or really partially informed.
I saw that originally Ms. ledlie began the discussion and then it got real ugly with overbearing people. That's who I REALLY would like to dialog with. I mean, she had the courage to battle with Sanofi on Facebook and they had to shut it down for a minute.
I am here to get info, and lend support ...not to be browbeaten because I ain't jumping for joy and my hair is all jacked up.
For real...who on here can point me to Ms. ledlie?
Thank you...and have a good evening.
Somewhere you've missed the fact that I too have thinned hair from all of this. I'm the one being browbeaten, by the way, by people who just can't bring themselves to say "OK, you have your opinion and I have mine."

My hair is also "all jacked up," and I have half (half) the eyelashes I used to have. I'm alive, but I'd rather be alive with all my hair and eyelashes. Who wouldn't?

But since I'm the one being bullied here again, I will say again -- that I was told. I was told it was rare but that it could happen. I'm very sorry that not everyone was. As I have also pointed out, I was not told about other side effects from other drugs that had a very negative effect on me.

I actually AGREE with you on this. But as long as you try to bully me, I will stand up to you, and that's a promise.
Choko

Fair Lawn, NJ

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#355
Dec 4, 2012
 

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You know what...from what I have read, YOU are the bully. You even chased Ms.
Ledlie off of here. I don't care about you and all that noise...you seem to like to twist things. If you take the truth and a no nonsense view as someone bullying you, that sounds like a personal problem to me.

Stand up to me...please. I think you need to go take a break.
babes

Athens, Greece

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#356
Dec 5, 2012
 

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What Gail does not understand is that it is not really the chemo that does any good because breast cancer is a systemic disease at the time of diagnosis.
Despite the strong medication the 5 year survival rate has not improved.I depends entirely upon each personal cancer whether it spreads finally or not and medication like Taxotere has very few to offer unfortunately. However doctors are married to the pharmaceutical companies and their strong bond does not let them tell always the truth.
Each one of us lives in a nightmare and needs to grab something to feel safe.
Gail has grabbed Taxotere...so sad...
Gail Perry

Tampa, FL

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#357
Dec 6, 2012
 

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Choko wrote:
You know what...from what I have read, YOU are the bully. You even chased Ms.
Ledlie off of here. I don't care about you and all that noise...you seem to like to twist things. If you take the truth and a no nonsense view as someone bullying you, that sounds like a personal problem to me.
Stand up to me...please. I think you need to go take a break.
I didn't chase Shirley off here. She harassed me for reporting ONE different experience out of many that she had. Bullies like to have backup, and that's what you're doing now. People don't read posts accurately, and having breast cancer is so emotional that people can't always behave on line as they typically would. Trying to rip people up doesn't win supporters, and you're completely off-topic now, attacking me instead of talking about the very real issue here -- poor communication from our doctors.
Gail Perry

Tampa, FL

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#358
Dec 6, 2012
 

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babes wrote:
What Gail does not understand is that it is not really the chemo that does any good because breast cancer is a systemic disease at the time of diagnosis.
Despite the strong medication the 5 year survival rate has not improved.I depends entirely upon each personal cancer whether it spreads finally or not and medication like Taxotere has very few to offer unfortunately. However doctors are married to the pharmaceutical companies and their strong bond does not let them tell always the truth.
Each one of us lives in a nightmare and needs to grab something to feel safe.
Gail has grabbed Taxotere...so sad...
Actually, five-year rates have SKYROCKETED since effective chemotherapies have been developed. It DOES depend on each person's type of cancer. That's why there are so many different treatments. THIS thread happens to involve people for whom Taxotere was an option.

I didn't "grab" Taxotere to "feel safe." I carefully researched all the options open to me. Fortunately I am trained in how to read medical research, which is a specialized kind of reading and writing (so are legal documents; law students take classes on that).

I'll try to post some REAL statistics on the improved survival rates, but here's an example: my mother had breast cancer in 1957. Fortunately the lump was near the surface and she found it while it was very small (the size of a pea). All they had to offer then was surgery, and she survived to die of something completely unrelated 32 years later. However, the death rate was so high in 1957 that when a doctor was taking my sister's medical history about 10 years ago, he questioned whether she really had had breast cancer.

I don't know of anyone who went into chemo-therapy without asking hard questions first, and I've met a lot of people who have had breast cancer (including several men) at this point.

By the way, the first recommendation for me was Taxol. WE (not the doctor, I and the doctor together) switched it to Taxotere at MY request. Taxotere was slightly less likely to cause neuropathy.

Once I had a slight hint of neuropathy develop, I stopped the treatment. Fortunately I was almost done, but that's the choice I made. I also made the choice, against doctor's advice, to stop taking AI's.

When you speak condescendingly of people you haven't met, it reflects on you, not them.
Gail Perry

Tampa, FL

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#359
Dec 6, 2012
 

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babes wrote:
What Gail does not understand is that it is not really the chemo that does any good because breast cancer is a systemic disease at the time of diagnosis.
Despite the strong medication the 5 year survival rate has not improved.I depends entirely upon each personal cancer whether it spreads finally or not and medication like Taxotere has very few to offer unfortunately. However doctors are married to the pharmaceutical companies and their strong bond does not let them tell always the truth.
Each one of us lives in a nightmare and needs to grab something to feel safe.
Gail has grabbed Taxotere...so sad...
I just went and looked it up. According to an article in the UK Guardian, survival rates have DOUBLED since the 70's. Couldn't find anything going back to the 50's. But just since the 70's they've DOUBLED.

That's why so many people choose the harsh treatments, which will no doubt look barbaric in 200 years. Life is better than death. I wish that for everyone here, but the path to survival is to use every treatment possible -- even if it leaves you with "jacked up hair," or worse, bald.

Terribly hard choices to make. I had a mastectomy because I didn't want all that radiation.*For me* it was the right choice, but I had a lot of medical pressure to not do it that way. It wasn't their life, and a couple of doctors went too far trying to pressure me. It's a very real issue, what *started* this thread -- are we *really* told everything we should be told? I wasn't always. Apparently Shirley wasn't either. I hope she's doing well.
babes

Athens, Greece

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#360
Dec 6, 2012
 

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Sorry Gail, but UK Guardian is not a scientific journal at all. I just happen to be in the medical field as well.
choko

New London, OH

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#361
Dec 6, 2012
 

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Gail Perry wrote:
<quoted text>
I didn't chase Shirley off here. She harassed me for reporting ONE different experience out of many that she had. Bullies like to have backup, and that's what you're doing now. People don't read posts accurately, and having breast cancer is so emotional that people can't always behave on line as they typically would. Trying to rip people up doesn't win supporters, and you're completely off-topic now, attacking me instead of talking about the very real issue here -- poor communication from our doctors.
You are a LIAR...I have NOT attcked you. I ended our dialog and you keep arguing with me and everyone else. You seem to take offense when people "read" you. Like the man Mike who called things as he saw them and you ripped into him and it really made you appear out of control and...well...crazy. it is no wonder that there arent many currnt posts on here. Your behavior is reaaly unacceptable. Perhaps you should create a blog where you can run the show and rant all you want.
i think you are rude and ignorant.
like Mike...i call them as i see them as well.
you have a great day, ok?
choko

New London, OH

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#362
Dec 6, 2012
 

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babes wrote:
Sorry Gail, but UK Guardian is not a scientific journal at all. I just happen to be in the medical field as well.
Thank you babes...that's like getting medical info from the National Inquirer or People magazine.

I have chosen to ignore gail...the effort is not woth the trouble to have meaningful dialog on this site with her ranting and accusing...

Thanks again
Gail Perry

Tampa, FL

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#363
Dec 7, 2012
 

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babes wrote:
Sorry Gail, but UK Guardian is not a scientific journal at all. I just happen to be in the medical field as well.
Then you will have no problem finding the confirming research! Aren't you the lucky one!

Sorry, "Babes," but if you really understood science that's what you would have done. You would prefer to have ACCURATE information, and would have gone to check it out for yourself.

Have fun doing that, and do come back and correct your misinformation when you're done,'K? People's lives can be changed for the worse if they believe inaccurate information in the 'net. I'm sure you wouldn't want to be part of that.
babes

Athens, Greece

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#364
Dec 7, 2012
 

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How silly could someone be Gail?
Anyway we live in a free world you can believe what you like,but the way you support this issue is either professional or pathological.
Maybe a good shrink could help you...
Gail Perry

Tampa, FL

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#365
Dec 9, 2012
 

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babes wrote:
How silly could someone be Gail?
Anyway we live in a free world you can believe what you like,but the way you support this issue is either professional or pathological.
Maybe a good shrink could help you...
To judge how silly someone could be, I suggest you look in the mirror. What a shame that you resort to name-calling. Not a strong way to make your case.

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