Laurie4b Posted July 20, 2012 Share Posted July 20, 2012 I have not shared on this forum before that I was dx'd with breast cancer last spring. It was a rough year, but my oncologist gives me a 93-99% chance of cure. I had wonderful support from our church. I got a complete pathologic response (They found zero cancer at the original site. Chemo preceded surgery. That gives a very good prognosis. I'm very grateful). I am deeply grateful. I am feeling healthy and moving on. The reason I've decided to post is that there is a common drug used for estrogen positive cancers that can cause permanent hair loss. Women are rarely told about this. I found out about it because it happened to me. I am one of the lucky ones--I am not totally bald, but have hair like a guy in his mid-30s who will be bald in a couple years: temples receding, see-through thin on top, a small bald spot on the back. I had super thick hair going into chemo and not one woman in our family has experienced thinning hair. So it was an adjustment . I guess my super thick hair is the reason I still have some and just look like an elderly lady or a middle aged guy instead of like Bozo the Clown, like so many other women affected by this end up. The drug is Taxotere. I am going to be meeting up soon with a woman who is pretty much bald because of the same drug. She lives in my town and went through treatment about the same time. There seems to be a lot of denial in the medical community about this. I'll share a couple links at the end where you can read about this. I'm sharing this not for sympathy--I don't like it, but I've accepted it. There is some possibility (not probability) that maybe some more could still grow in over a couple years, but for now, I keep it covered with cute hats and a wig. But it is classified as permanent when it's not grown back by 8 months post chemo. I am not one to post private stuff on the web. The reason I'm violating my own privacy and sharing it is so other women will be informed and can use the info to make the best decision for themselves. Sometimes, there is another drug that may work as well or close to as well or have different side effects. At least women can choose or be prepared. A lot of intelligent women read this site and many of you "know" me to some extent from years past, so I hope it's a way of getting the word out. There is a ton of support for cancer patients who lose their hair temporarily. I and the other woman have experienced very little having lost our hair permanently. The probability of this occurring is currently thought to be as high as 6% with some chemo combinations. That doesn't sound high, but picture it like this: you're in a room with 16 other women and one of you won't have her hair when you walk out. Do those sound like odds you like? http://www.connexionfrance.com/baldness-cancer-taxotere-sanofi-aventis-cancer-support-group-10508-news-article.html http://www.aheadofourtime.org If anyone posts that I should be glad that I am cured, I hope someone else will "slap her upside the head" as they say in parts of the south. Again, I'm not posting this for sympathy and have accepted it and am dealing with it. Of course I am glad I am cured! I am deeply, deeply grateful--but I would also like to have my hair and I'm not sure that it was necessary to lose it to be cured. I think there was an alternative drug I might have chosen. To me, it's two different issues. At any rate, I was never told this was even a possibility. And I want other women out there to know, choosing with their eyes open. Who knows? Had I been told, I may have chosen this option anyway. It's a good drug--nasty like any other chemo, but currently used for many bc patients. Had I gotten my particular cancer this year or next instead of last year, I would have benefitted from the smart bomb drug they are talking about. No debilitating chemo at all. Bad timing. But Taxotere will still be used for many other women for other types of e + breast cancer. So here's your warning. I hope none of you need it, but practically speaking, you're at least likely to know someone who might appreciate the info. Quote Link to comment Share on other sites More sharing options...
TranquilMind Posted July 20, 2012 Share Posted July 20, 2012 The drug is Taxotere. If anyone posts that I should be glad that I am cured, I hope someone else will "slap her upside the head" as they say in parts of the south. Again, I'm not posting this for sympathy and have accepted it and am dealing with it. Of course I am glad I am cured! I am deeply, deeply grateful--but I would also like to have my hair and I'm not sure that it was necessary to lose it to be cured. I think there was an alternative drug I might have chosen. To me, it's two different issues. At any rate, I was never told this was even a possibility. And I want other women out there to know, choosing with their eyes open. Who knows? Had I been told, I may have chosen this option anyway. It's a good drug--nasty like any other chemo, but currently used for many bc patients. Had I gotten my particular cancer this year or next instead of last year, I would have benefitted from the smart bomb drug they are talking about. No debilitating chemo at all. Bad timing. But Taxotere will still be used for many other women for other types of e + breast cancer. So here's your warning. I hope none of you need it, but practically speaking, you're at least likely to know someone who might appreciate the info. Thanks for sharing this. And I'll smack them upside the head for you. Glad you are fine now! Quote Link to comment Share on other sites More sharing options...
nono Posted July 20, 2012 Share Posted July 20, 2012 :grouphug::grouphug: Thanks for taking the chance. It's great to try to help others! Quote Link to comment Share on other sites More sharing options...
thescrappyhomeschooler Posted July 20, 2012 Share Posted July 20, 2012 You've been through a lot. Thanks for sharing your experience and knowledge. Quote Link to comment Share on other sites More sharing options...
Catherine Posted July 20, 2012 Share Posted July 20, 2012 My Mom nearly died after a blood clot that was likely the result of hormonal chemotherapy she was taking. I mean, she DID die, and through the grace of God and some very skillful CPR and lifesaving, and a very long stay in the hospital, she survived and is OK today. These are not benign drugs. They are not used lightly and certainly not recommended without considering the risks and benefits. The difficulty is that given the odds of a serious or disfiguring side effect, which is a possibility for ALL chemotherapy drugs, how does one make a decision without knowing the future? It is just an unknown. Regardless, I will hold you in my thoughts and hope that you do get some regrowth of your hair. Quote Link to comment Share on other sites More sharing options...
tammyw Posted July 20, 2012 Share Posted July 20, 2012 I'm so sorry for what you've had to go through. That is terrible you weren't told of the other possible side effects. And thank you for sharing your story. My mom had breast cancer, and it's always a fear in the back of my mind. I think it's important to have information like this out there. Quote Link to comment Share on other sites More sharing options...
lionfamily1999 Posted July 20, 2012 Share Posted July 20, 2012 :( my mom had her dose of this last week :( it is part of her rounds. :banghead: :banghead: :banghead: Thank yoh for sharing. Quote Link to comment Share on other sites More sharing options...
justamouse Posted July 20, 2012 Share Posted July 20, 2012 Oh God, you poor thing. As if it didn't take enough from you. :grouphug: Quote Link to comment Share on other sites More sharing options...
Happy Posted July 20, 2012 Share Posted July 20, 2012 (edited) I've just been through 5 1/2 months of taxotere in treatment for breast cancer. Sigh. I don't think your post is particularly helpful. It certainly wouldn't have helped me in January as I begin treatment with taxotere. The drug can also cause permanent liver problems. In rare cases it can cause a blood problem five or six years post chemo. I didn't dwell much about later damage before treatment because it simply is the BEST drug for me and my treatment. I'd rather take the chance and live to tell about it than fear all the what ifs. Every drug has side effects...and some of them can be permanent. Herceptin can cause huge heart issues. I'm going to be taking it for a full year and then some...is it a risk? Yes, so is is dying from breast cancer. I watched my mom die of it... I'm sorry you are dealing with permanent hair loss. It's tough on a woman to lose her hair. If my hair was the cost of being cancer free...Ill pay it because I want the chance to watch my sons grow and to dance in a couple of decades at my granddaugher's wedding. I've gotten kinda used to wearing a cute cap everywhere. And it takes very little time to get ready in the morning if you slap on a cap or (if I'm meeting a client) to pull on the wig. I know people who've lost limbs to cancer. Even more who lost their lives to the blasted evilness. I still choose taxotere as my best darn chance. Slap away if you want. Remember you are slapping a person in treatment for breast cancer. Edited July 20, 2012 by Happy Quote Link to comment Share on other sites More sharing options...
M&M Posted July 20, 2012 Share Posted July 20, 2012 Laurie I am so happy that you are well! I am very sorry for you loss and thank you for sharing in such a public way. I have two friends who have fought bc and are also doing well. I think that both of them would liked to have known in advance if their hair loss could be permanent. I think the re-growth of hair is a milestone for cancer survivors, ((hugs)) that you cannot have that milestone. Quote Link to comment Share on other sites More sharing options...
3browneyedboys4me Posted July 20, 2012 Share Posted July 20, 2012 I think your post is VERY helpful and I, for one, appreciate any information that migt protect me from side effects. I do believe all meds have them, but this is a side effect that you are saying they aren't acknowledging. That's not fair. So, thank you! How sweet and kind of you to put yourself out there and give other women the chance to make that decision. You are very kind and have been through a LOT! God Bless you! :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
3browneyedboys4me Posted July 20, 2012 Share Posted July 20, 2012 I'm sorry for your ordeal, but I disagree that her post isn't helpful. It is always nice to have information about potential side effects that dr's aren't revealing to patients. I know that the side effect isn't a 'health problem' but it's always nice to know what you are going into with your eyes wide open. You should have the right to know and weigh your decision based on ALL info. :grouphug: I've just been through 5 1/2 months of taxotere in treatment for breast cancer. Sigh. I don't think your post is particularly helpful. It certainly wouldn't have helped me in January as I begin treatment with taxotere. The drug can also cause permanent liver problems. In rare cases it can cause a blood problem five or six years post chemo. I didn't dwell much about later damage before treatment because it simply is the BEST drug for me and my treatment. I'd rather take the chance and live to tell about it than fear all the what ifs. Every drug has side effects...and some of them can be permanent. Herceptin can cause huge heart issues. I'm going to be taking it for a full year and then some...is it a risk? Yes, so is is dying from breast cancer. I watched my mom die of it... I'm sorry you are dealing with permanent hair loss. It's tough on a woman to lose her hair. If my hair was the cost of being cancer free...Ill pay it because I want the chance to watch my sons grow and to dance in a couple of decades at my granddaugher's wedding. I've gotten kinda used to wearing a cute cap everywhere. And it takes very little time to get ready in the morning if you slap on a cap or (if I'm meeting a client) to pull on the wig. I know people who've lost limbs to cancer. Even more who lost their lives to the blasted evilness. I still choose taxotere as my best darn chance. Slap away if you want. Remember you are slapping a person in treatment for breast cancer. Quote Link to comment Share on other sites More sharing options...
yarrow Posted July 20, 2012 Share Posted July 20, 2012 (edited) . Edited July 20, 2012 by Karen in NE Quote Link to comment Share on other sites More sharing options...
Night Elf Posted July 20, 2012 Share Posted July 20, 2012 Slap away if you want. Remember you are slapping a person in treatment for breast cancer. I'm sorry for what you're going through but the OP deliberately asked people to not say that. What you're feeling is likely very different from what she is feeling. You're using your treatment to get away with doing something that someone asked you not to do. That's not cool. So I guess you'll think I'm being mean because I'm calling you out on this. Again, I'm sorry for what you're going through but I don't think you need to put someone else down for how they are handling their own treatment. And my sister also had breast cancer, so I'm not totally ignorant of what someone feels when she is going through it. It was one of the hardest things she's ever done in her life. Quote Link to comment Share on other sites More sharing options...
Happy Posted July 20, 2012 Share Posted July 20, 2012 I'm sorry for your ordeal, but I disagree that her post isn't helpful. It is always nice to have information about potential side effects that dr's aren't revealing to patients. I know that the side effect isn't a 'health problem' but it's always nice to know what you are going into with your eyes wide open. You should have the right to know and weigh your decision based on ALL info. :grouphug: The reason I don't consider her post helpful is that it is emotional to deal with diagnosis, treatment, and the fallout of treatment. It's hard to hear you will lose your hair during the normal process of chemo. I fear someone may read her post and decide to never allow taxotere if their HAIR may never return. It's just hair (and I don't have any at the moment. I'm living this, remember.) Should the docs tell you side effects that could be permanent? Sure. Mine did....but she didn't dwell on the potential for permanent--mentioned and moved on. Docs also don't need a fear of hair loss to sway someone from using the best drug in the arsenal-- if that's the determination. I spent a lot of time reading up on the drugs as I started treatment. I spent a lot of time over on breastcancer.org and heard many of these same vents. Some of the things scared me spitless--needlessly. I have never been so terrified as when I started chemo. And it was HARD, HARD, HARD. I even had a few unexpected side effects...but none of them were a surprise to my oncologist. If I look in my notes, I see she mentioned every none of them as a potential problem. It's not that I love taxotere. I just don't want someone to be put off treatment because of this. Your mileage may vary. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted July 20, 2012 Author Share Posted July 20, 2012 (edited) I'm glad some women's onc's do tell them. It was not discussed with me. I had a friend who had been through bc 8 years prior there in addition to dh, so I know it wasn't just that my mind wasn't processing everything--that's why I took my friend. She had also worked as a volunteer at the cancer center. The woman I've connected to who is pretty much bald had the same experience with the same onc. One of the top in the country. I was in the cohort that should have expected 3%; the other woman I spoke of had the kind of treatment that would be 6%. We are both expressing ourselves to the onc. . My point is that women should know ahead of time, and if you read the aheadofourtime site, women were by and large not told. That site also has a study saying another drug, Taxol, is as effective as Taxotere, and has a much lower rate of permanent hair loss. It might well have other side effects but the main issue is that it is less convenient (need it once a week.) That is an issue for some people; wouldn't have been for me. Like I said, I may well have still chosen Taxotere, but I would have liked to have been told. And I'm not one of the ones who is bald. I just look like an old lady. I'm not angry about it; I've accepted it. But I want other women to be able to have all the information. Since every single one I've connected with with this side effect reported that she did not get the info, I wanted to do my part to get the word out. Edited July 20, 2012 by Laurie4b Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted July 20, 2012 Author Share Posted July 20, 2012 :( my mom had her dose of this last week :( it is part of her rounds. :banghead: :banghead: :banghead: Thank yoh for sharing. It's more probable that she's in the 90+ % who don't get it, and as I said, it's an effective drug. I might well have chosen it anyway. I didn't worry about what might happen with this and that. Just took it day by day. And with over 40 side effects and hospitalization with an infection, sometimes it was hour by hour, that's what you have to do. But before you begin treatment, you really should have full disclosure. I hope all goes well for your mom. It does for most people! Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 20, 2012 Share Posted July 20, 2012 Thank you for breaking your own rules for the benefit of everyone else. I admire you for that!!! I am so glad to hear you are doing well. So very glad!!! Quote Link to comment Share on other sites More sharing options...
CatholicMom Posted July 20, 2012 Share Posted July 20, 2012 Good info to know. Doesn't hurt anything to tell people what you wish you knew. They can do with it what they want. I agree; It is 2 separate issues as to whether you are thankful for the treatment that saved your life, and whether you are unhappy about losing your hair. Obviously you would rather be half-bald than dead, but that's not the point. If there's another drug that is very effective and has comparable side-effects but doesn't have the possible side-effect of permanent hair loss, it would be perfectly rational for someone to choose that instead based on this information. Quote Link to comment Share on other sites More sharing options...
Denisemomof4 Posted July 20, 2012 Share Posted July 20, 2012 Good info to know. Doesn't hurt anything to tell people what you wish you knew. They can do with it what they want. :iagree: Quote Link to comment Share on other sites More sharing options...
lionfamily1999 Posted July 20, 2012 Share Posted July 20, 2012 It's more probable that she's in the 90+ % who don't get it, and as I said, it's an effective drug. I might well have chosen it anyway. I didn't worry about what might happen with this and that. Just took it day by day. And with over 40 side effects and hospitalization with an infection, sometimes it was hour by hour, that's what you have to do. But before you begin treatment, you really should have full disclosure. I hope all goes well for your mom. It does for most people! She has been taking it once a month for a long time now and most of her hair is gone. :grouphug: Hers metastisized last year after two years c free. I am just disappointed that this would be pigpiled on that. Sorry for the angry post, it just gets so frustrating. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted July 20, 2012 Author Share Posted July 20, 2012 She has been taking it once a month for a long time now and most of her hair is gone. :grouphug: Hers metastisized last year after two years c free. I am just disappointed that this would be pigpiled on that. Sorry for the angry post, it just gets so frustrating. Sorry I misunderstood. :grouphug: to your mom. Quote Link to comment Share on other sites More sharing options...
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