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Chelee · 08-22-2010, 03:03 AM

Pam, I just wanted to add one more thing in case you do get a get a chance or find a way to try T-DM1. I went back to read what Irene said about T-DM1 as I remembered it worked so well for her. (I do agree it might not be a magic bullet for everyone...but so far it seems to have worked really well on most everyone I've heard about.) Here is one paragraph from Irene's post.
__________________________________________________ __
On herceptin/dmi trial

>>>>Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.<<<<

I found this sentence in another post from Irene about T-DM1.
>>>>This has been working miracles on me and would like to be given another chance.<<<<
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As you know Irene had been on so many chemo regimens since 1996 thur 2008--so I think that says alot coming from her. For her to say she has never responded that well to any chemo is exciting to me & gives me so much hope for all of us women that need this drug. I just wish they would hurry up so those of us that need it don't have to fly across the country and go broke trying to get to a trial site. I wish you didn't have to deal with any of this. Hang in there.

Chelee

08-22-2010, 03:03 AM	#15
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: update - what to do? Pam, I just wanted to add one more thing in case you do get a get a chance or find a way to try T-DM1. I went back to read what Irene said about T-DM1 as I remembered it worked so well for her. (I do agree it might not be a magic bullet for everyone...but so far it seems to have worked really well on most everyone I've heard about.) Here is one paragraph from Irene's post. __________________________________________________ __ On herceptin/dmi trial >>>>Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.<<<< I found this sentence in another post from Irene about T-DM1. >>>>This has been working miracles on me and would like to be given another chance.<<<< ____________________________________________ As you know Irene had been on so many chemo regimens since 1996 thur 2008--so I think that says alot coming from her. For her to say she has never responded that well to any chemo is exciting to me & gives me so much hope for all of us women that need this drug. I just wish they would hurry up so those of us that need it don't have to fly across the country and go broke trying to get to a trial site. I wish you didn't have to deal with any of this. Hang in there. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.