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Midwest Alice · 10-26-2009, 06:52 PM

When I said Herceptin doesn't cross the blood brain barrier, he said thats right or thats right but we don't know.

I really like him, but I talk to his nurse then a fellow or his PA. They go back and talk to him. Then he comes in and I talk to him. So I don't know if he gets everything I say.

This was my first MUGA there. His PA told me I should be off H in Janurary because my MUGA had gone form 53 to 43 then up to 48 on Enarapril. He keep me on it and said get my MUGA up. So I changed my eating habits, started walking and lost 30 lbs. My MUGA went up 11 points! to 59...

The PA came in first said all clear. He wants you to go off H and Z. I said no he told me I would be on it forever. Oh I will check blah..blah.. I ask about the spots that were there in Jan. and they were all gone.

I ask her if they were cancer and she said they were because they were gone. That would make me a IV

So I got out my reports. One states many spots, for example list T3, blah,T10 blah, T5 blah,, For example means they couldn't even write them all down. And ask her why I would want to stop H her answer was because they are not active.

Then I had to ask her for my MUGA score. and it was up 11 points!! go figure. Again why would I want to go off H?

"Well that is a good score for you" ok yes it was very good for me.

Jill I am at a loss

10-26-2009, 06:52 PM	#8
Midwest Alice Senior Member Join Date: Dec 2008 Location: Southern Indiana Posts: 455	Re: 3 years + on Herceptin, Why When I said Herceptin doesn't cross the blood brain barrier, he said thats right or thats right but we don't know. I really like him, but I talk to his nurse then a fellow or his PA. They go back and talk to him. Then he comes in and I talk to him. So I don't know if he gets everything I say. This was my first MUGA there. His PA told me I should be off H in Janurary because my MUGA had gone form 53 to 43 then up to 48 on Enarapril. He keep me on it and said get my MUGA up. So I changed my eating habits, started walking and lost 30 lbs. My MUGA went up 11 points! to 59... The PA came in first said all clear. He wants you to go off H and Z. I said no he told me I would be on it forever. Oh I will check blah..blah.. I ask about the spots that were there in Jan. and they were all gone. I ask her if they were cancer and she said they were because they were gone. That would make me a IV So I got out my reports. One states many spots, for example list T3, blah,T10 blah, T5 blah,, For example means they couldn't even write them all down. And ask her why I would want to stop H her answer was because they are not active. Then I had to ask her for my MUGA score. and it was up 11 points!! go figure. Again why would I want to go off H? "Well that is a good score for you" ok yes it was very good for me. Jill I am at a loss __________________ Alice 04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53 06/08, 4 A/C, Neulasta 08/08, Herceptin/tax 12 every week 10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks 11/08 33Rads; 12/08 MUGA 48 2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove 4/09 Brain MRI - CLEAR; MUGA 54 7/09 chest ultrasound, 10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!! 1/11 Hip replacement 7/11 Hip 2 replacement 4/12 4 years!! Herceptin 6/12 start reconstruction finish in 12/12 2/14 Herception - 6 years!!! 1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it."