Ladies, for anyone not on our emailing list for the above problem , if you havent got your hair back after 6 months please contact me.
We are a large group of ladies who give each other support and are busy working on things :-) you dont have to do anything but you will at least keep up to date with whats going on.
I am gathering stats for my spread sheet so need as many sufferers of this disfigurment as poss.
thanks alot.
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dlb823 Joined: Aug 2008 Posts: 2,502 |
Aug 17, 2009 12:56 pm
dlb823 wrote:
shirley ~ I've heard of this happening occasionally, but assumed it was extremely rare. So when you say "large group" that caught my attention. I went through TC last summer/fall, and in spite of talking to 3 different oncs, I don't recall ever being told that this could happen. I'm curious to know if it's in the hand-out literature as a potential SE for either T or C. I'm also curious to know if the # of infusions (4 vs. 6) appears to make any difference. It would be good to have the facts even if we are fortunate enough not to have had this horrible SE happen to us. Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb
Dx 2/1/2008, 1cm, Stage IIa, Grade 3, 1/16 nodes, ER+/PR+, HER2- |
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shirleyl Joined: Mar 2007 Posts: 142 |
Aug 17, 2009 01:20 pm
shirleyl wrote:
Hi Deanna, i cant help you with the literature as i am not in the USA but France. There doesnt seem to be any pattern as to wether its more likely the more sessions you have, myself only had 3 and without checking theres at least another 2 ladies that had just 3. The thing is the Oncs dont know about it because the drugs company are keeping it hushed up which is scandalus! |
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chelev Joined: Feb 2009 Posts: 977 |
Aug 17, 2009 01:25 pm
chelev wrote:
Hi, Shirley. I had only 2 treatments (stopped because of allergic reactions - one of which being severe folliculitis that lasted three weeks) and the last one was April 23, 2009. I am getting growth except on the very top of my head, like male pattern baldness. Very frustrating and I am fearful the taxotere is causing it. Am using 2% minoxodil for women, as recommended by a pharmacist familiar with breast cancer treatments and side effects. Only using it 2 weeks, so don't think I am having results yet. chelev - Life is what you make of it - keep what works and get rid of what doesn't. TC - 2 rounds, Radiation - 33 rounds. Oncotype score - 27 (18%). "What that does not kill you will make you stronger."
Dx 2/14/2009, IDC, 3cm, Stage II, Grade 2, 0/4 nodes, ER+/PR+, HER2- |
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shirleyl Joined: Mar 2007 Posts: 142 |
Aug 17, 2009 01:33 pm
shirleyl wrote:
I am sorry it does sound familiar! The minoxodil only works if you keep using it - when you stop any of the hair the drug has prodused will fall out. Our problem seems to usually look like male pattern baldness - its very destressing. Give it another month or two before really panicking :-) please, keep us in mind and if you are another unlucky one get in touch and we can add you to our growing list and you will get plenty of support from people who understand. Hopefully yours will return. What does your onc say about it, they HAVE to report it to Sanofi Aventis as a side effect - but they will say its extremely rare as this is what they always say. WHATS EXTREMELY RARE! |
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