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justkeepgoing 08-27-2011 03:31 AM

Hair loss on TDM1?
 
Hi,
I am starting TDM1 next week and wondering if hair loss is common. My last chemo was June of '08 and I have all my hair. I think there is hair thinning . Just wondering if I should dust off that old wig I have stashed in my drawer!
Thanks

Sheila 08-27-2011 05:11 AM

Re: Hair loss on TDM1?
 
I think Chris would be the expert on this, since she was on TDM-1 from the beginning trials...I think over 3 years, and her hair always seemed the same...no loss that was apparent...of course she is quite the blond bombshell, so she may have been doing some special treatments to keep the hair identity...hoping she responds. I was only on it 3 rounds...not long enough to tell!

Kathy T 08-27-2011 08:01 AM

Re: Hair loss on TDM1?
 
I have been receiving T-DM1 for 2 years--no hair loss but my hair was very curly --now straight.
Kathy T

hutchibk 08-27-2011 10:06 AM

Re: Hair loss on TDM1?
 
Hair loss is not a side effect of TDM1... mine was thinner and slower growing on Tykerb, but since starting TDM1 in March it is noticeably thicker and grows faster.

chrisy 08-27-2011 06:24 PM

Re: Hair loss on TDM1?
 
I had no hair challenges (other than the usual bad hair days) while on tdm1. And Sheila, not sure what you're implying, but I owe all the bombshell-ness to chocolate and potato balls:)

hutchibk 08-27-2011 07:37 PM

Re: Hair loss on TDM1?
 
The potato balls have done wonders for me as well...

justkeepgoing 01-20-2012 10:24 PM

Re: Hair loss on TDM1?
 
Wow, 2 years??? I am on TDM-1 as of September and my disease improved greatly at the first scan and now at my last scan it stabilized. My doctor believes it will not improve upon it's stable condition and I am wondering what your experience has been. I feel so sad about this!
Thanks!

Kathy T 01-21-2012 09:32 AM

Re: Hair loss on TDM1?
 
I have remained stable with 2 1/2 years on T-DM1 but no NED. I am thankful for the stability.
Kathy T

KDR 01-21-2012 07:14 PM

Re: Hair loss on TDM1?
 
I just started the 09-093 trial, which is Taxol combined with MCC-DM1 and Pertuzumab. I lost may hair upon Taxol recall, much more so this time. It does say, as did my onco, that hair thinning would be side effect of the MCC-DM1, but until I'm off the Taxol, maybe in two months or so or when there is shrinkage or complete response, I won't know if the DM-1 causes hair thinning for me.
First set of scans on Wednesday. I feel different. I did after the first treatment. Shall let you know,
Karen


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