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Just brilliant Brenda,you deserve a break!! Please keep us updated about T-DM1, we are all cheering for you.

Ellie

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What good news! I am happy you are going to benefit from TDM1 after such a long wait. Hugs. Michka

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thinking 'bout you today on the echo....60....60...60...

And I'll take some of those platelets, please!

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Thanks all for rootin' for me! I did my part, and now I have to keep it up and build on it.

The recipe for me was 1. Lisinopril at bedtime, 2. CoQ10, 100mg, twice a day, 3. CardioProtect supplement twice a day, (which has l-taurine, resveratrol, CoQ10 <50mg> and other vits and extracts), made by Bio Genesis, 2 in the am and 2 in the pm, 4. Omega 3 ~ (EPA, DHA, GLA) 2 per day, 5. NO alcohol, NO caffeine, LOW sodium, 6. Brisk walking 30-45 minutes every day.

I did this for 3 weeks religiously and my LVEF increased from 45% to 53% (and I have been off of Herceptin/Tykerb for 5 week "wash out" period before trial treatment, which was bound to help, too).

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Chrisy, I have some little side plates that I call "platelets" ~ but I guess those won't really help, huh? ; )

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Just GREAT!

Could you explain your CoQ10 dosage?
Would be nice to know that effective dose.

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Brilliant!

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Fantastic, enjoy the trip.
Trish

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Brenda,
Congratulations! That's just wonderful news. All that hard work and medication paid off. Wishing you lots of luck with the T-DM1. Have a safe flight and keep us updated when you have a chance. You so deserve this. Woo hoo!

Chelee

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Hey Steph... good idea... I'll edit the post above w/ the dosages...

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Brenda,

Your posts always inspire me to be strong and a fighter! Wishing you lots of good luck with TDM-1. Will be waiting eagerly to hear your updates!

hugs,
shobha

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Brenda,

I really admire your tenacity in fighting this disease. You are totally remarkable and a great example to all of us. You have strength and purpose in getting through the information, bureaucracy, and paperwork to get the treatment you need.

Congratulations! And hoping the combo completely knocks out the cancer!

Joan

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Happy Dance!!!!!

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Brenda! Yahoooooo! So glad you are on your way. You are such a rock star. And, ooooohhhh, how you girls make me laugh with all your football talk. LOL Seriously, I do miss my beloved Texas teams...and my Texas weather. :)

I eagerly await all the good news you will be posting. We love you, Brenda!

Maureen

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Thanks girlz! OK, so here's how it's going so far:
Day 2 (day after treatment) doesn't feel terrible... I slept hard and long (13 hours) and didn't want to wake up, but the cat was determined that I would wake up and feed him. So, I did. I have felt like being horizontal most of the day, just feel on the edge of a small headache but just not really there, a little achy and puny like the last day of the flu, no fever, just run down and no energy. I have to say, it's loads better than I felt after TaxotereAdriaCytoxan or TaxolCarboHerceptin, but just different from Herceptin/Tykerb... I can handle this no prob. We'll see how tomorrow goes. And I hear that it will probably mellow out a little too.

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Yup, day 2 sleepies...
Since I work full time and get treated on Monday, I have to remind myself on Tuesday and sometimes Wednesday that about 3pm I might hit a wall. But I do enjoy indulging in a good, long nights sleep for the first few days.

And you have described the symptoms perfectly - sort of like the last day of a flu. Remember, you can avoid all of these with an advil if you need to.

Me being a good little lab rat, I usually let it ride so I can give a good "report" when quizzed about how high did my fever get? They seem to be so disappointed when I tell them I didn't have time to deal with it so I popped an advil, I hate to see that little quivering lip on the study nurse:)

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They also gave me a script for Levaquin to keep on me in case I do get a high fever... which the doc says would indicate an infection, in which case I am required to page him and he will call me back. He's an incredible doc...

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Brenda, Thanks for the report. I love the part "I can handle this no prob". Am so glad that you are on the TDM1 path. I am almost at the end of March madness (no treatment) and will meet with my onc on April 1st to see wtf to do next. My main question is if I'm allergic to Herceptin as a drip - will I also react to the tdm1 version? Anyhow - good to hear you say "I can handle this" because if you can, then I can, too. Sending much love, Flori

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Flori - I didn't know you were allergic to Herceptin... even with benadryl? Hmmmm ~ it's definitely worth an ask about T-DM1. (and I would move on it sooner rather than later if you are curious, as I have heard rumblings that the EAP may be concluded in the next few (3ish) months and changed to a phase 3 trial, comparing it to physicians choice (to bolster data for the next FDA attempt). It would open up again in 2012/13 time frame when it goes to the FDA for approval again, as the bridge for mets patients while they wait for it to come to market.

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Had to stop last infusion. Red ears, weird not right feeling all over, pounding heart, although my lvef is fine at 70%. Time before that I had numb hands, then arms then chest and had to slow drip down to 50 mph (don't really know the rate but it was hours not minutes to finish one bag). Seems like an allergy. Some schools of thought say stopping histamine response does not stop my body from clearing it fast - could be as fast as 5 hours. Is 5 hours enough to do any good? And on and on with the questions. I see my onc on Friday and will see if she can offer some guidance. I am nervous in the service.

Hey, just noticed that this is my 1000th post!! And my 4 year cancerversary of stage rage.