Hair loss on TDM1?

[justkeepgoing]

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]

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]

I have been receiving T-DM1 for 2 years--no hair loss but my hair was very curly --now straight.
Kathy T

[hutchibk]

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]

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]

The potato balls have done wonders for me as well...

[justkeepgoing]

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]

I have remained stable with 2 1/2 years on T-DM1 but no NED. I am thankful for the stability.
Kathy T

[KDR]

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