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Old 09-18-2012, 06:59 PM   #11
Lori R
Senior Member
 
Join Date: Jan 2008
Location: Evergreen, Colorado
Posts: 454
Re: TDM-1 side effects

Hi ,
I am bumping this string up for Nancy L, who was questioningTDM-1 side effects and their timing.

There is a good news story, so keep reading.

I had my first treatment of Taxol + TDM-1 4 weeks ago. I felt fine driving home Friday evening and even ran some errands on Saturday. WOW....livin large. Curled up on the couch Saturday evening where in the span of an hour I had severe chills, and energy dropped to 10% normal. It was all I could do to get to my bedroom. Slept in clothes that night.

Sunday felt horrible with flu symptoms, nausea, headache. SOOOO afraid this was going to last for days. At 4 p.m on Sunday the clouds began to part.

Lesson learned.
I didn't drink NEAR enough water...Hydration is key to feeling better. I can tell immediately after a big drink.
I didn't have anti-nausea meds on hand. (never needed them with) NOT smart. No I have the meds.

2nd TDM-1 Dr. prescribed a hit of steroid. I REALLY don't want to take unnecessary drugs, so I cut the dose in half. The weekend was OK!! Drank and drank (water that is), took antinausea meds and had PJs on at 6 p.m on Saturday evening.

I was able to be out and about both days. YEA!!! Celebrate. The Onc. said that some people experience a "violent" reaction (I am pretty sure my words not his), and that the reaction reduces with each progressive treatment.

Runny, slightly bloody nose
Fatigue

I hope these insights help.

It would be GREAT if you had someone drive you. I drive myself, as I am hanging onto my independence with every bit of strength I have. I hope it doesn't prove to be stupid.

Please keep us posted on your experience!! Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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