Just a quick update...
 

In January, I did 5 more days of IMRT on 3 previously treated brain spots, and also the previously treated one in the pituitary area (which is inside the skull, but not in the brain/blood brain barrier). The good news (I guess it's good news, but I'd rather have none at all...) is that there are still no new spots. Just pesky old buggers.

I also enrolled in the T-DM1 EAP trial in Denver last week, so I am off of old school Herceptin, Tykerb, and tamoxifen now (2 week washout period). I get my first T-DM1 treatment in Denver on March 4! Whew! Will be flying up there every 3 weeks... and it's pretty easy travel. This has been long and hard fought (been eyeing this thing since October, and finally I made it happen.) I am very excited. My trial doc is truly top notch and I love the clinic there! I think this will be a great opportunity on my particular uncharted path.

Best wishes to all out in our little world who are also looking for options and answers... crossing my fingers and toes and eyes that we all find options as we continue to need them!

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Brenda,
Thank you for the update. I have been thinking of you and saying my prayers that would lead to the best treatment for you. You are just amazing. You certainly are the traveler with a fixed course. Only you would state that going every 3 wks. to Denver is easy travel!!!! I know some people who complain about going over the bridge to the city...you are one special warrior woman.

Sending you lots of hugs and good wishes.
Jean

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Hi Brenda what you had (IMRT) is that the same as volumetric modulate arch therapy? (VMAT- IMRT). I start this treatment tomorrow it only treats the Pesky's and not good tissue.Its very new here only one machine thats been operating since October.

Bit scared but so pleased to start something. I wish you all the best for your travels. I to like to travel and did six months of New Zealand to Seattle which i would do again if i had a chance.

I look forward to see how T-DM1 goes for you good luck and well done getting on the trial. Regards Jacqui

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So glad you could get the treatment you've been working towards and that it feels right to you. I'm hopeful that it will go well.
Trish

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Brenda,

Thanks for the update, and best of luck to you with your new treatment.

Regards,

Hopeful

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Brenda, I am happy you got in the TDM1 trial! I hope it will be a good option for you like it was for others in our group. Michka

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Thanks for the update. Good luck with T DM1. Let us know how it is going when you have time. Take good care of yourself.

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Brenda, glad you got in the trial. Best wishes!!! Mary L

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Sending good wishes Brenda and hoping the trial works well for you!!

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Brenda;
Sending my best wishes the TDM1 trial works really well. I'm sending my support and prayers your way.
Hugs and prayers,
Kris.....

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Hi Brenda
Really good to read your post.Good luck with your T-DM1 trial.
Please keep us posted. Your posts always used to cheer me up on bad days.

Hugs
Ellie

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Brenda,
You are a strong and classy lady (as I see from your pic). My prayers are with you for strength and a way to NED!
Elizabeth

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Brenda,

So glad to hear you finally made it happen and are on your way in the trial. It certainly was a hard fought battle. I'll bet this is the ticket!

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Brenda,

"Where there's a will, there's a way." You certainly have examplified that! Here's to a good 'trial' result!

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Hey Brenda!
March 4 is just around the corner. I'm so excited that all you hard work has gotten you in the trial. You'll surely be on my mind and in my prayers for that special dayp and all those to come.

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Brenda
Its been said perserveance is the hard work you do
after you get tired of doing the hard work you already
did. You defintly have it. Best of luck with the new
treatment and many good flights on the wings of angels
to a complete dance with NED.
patb

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Hey, Roomy, I knew you'd hound them 'til they surrendered! Well done! Now about that new avatar.....sorry, but who is that? You? Ya know, it looks a little like Johnny Depp's Willy Wonka!

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That was my halloween costume, Alice in Wonkaland. So glad you figured part of it out! I am impressed! New avatar coming soon. How are you doing??

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MA in TX, we need to get together sometime soon, since we are only about an hour away from each other... I happen into SA pretty often.

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Go Brenda! Thanks for the update. Lots of good wishes go with you on your trips to the mountains.

I laughed (hard!) at your sentence about "old school" drugs!

Love,
Debbie Laxague

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Brenda,

Wishing you the best of luck with this treatment that so many call "a miracle". Hoping forever NED for you:).. Please keep us posted

Lots of Love,
Laura

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Wish you all the best brenda

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Brenda, you are not only pioneer, but also beautiful woman!

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Go, Brenda, go! Hope you meet lots of other survivors on your trips!

A.A.

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Hi Brenda,

I'm so happy you posted. I come to her2support and always think of you and wonder how you are doing.

Praying all goes well but thankful you have found yet another option for you.

Blessings and much love,

Mary Jo

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Crap on a crapstick... ECHO and MUGA came back too low (45%) to start TDM1 tomorrow. Will make an appt with a Cardiologist for early next week and possibly start Coreg and Linisopril, as well as diligent appropriate exercise, no alcohol/no caffeine, low sodium, and CoQ10... and hope for nice recovery of over 50% in the next 2-3 weeks. It's always something!

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Good luck Brenda, I hope that your heart scores go up quickly so you can start TDM1 as soon as possible.

all the best
caya

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Are you in Denver right now? I wondered if the altitude had affected the MUGA score. Hope it improves soon.

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Well Brenda, you know what I think about it...

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That crapstick is getting awfully FULL!
Time to get a new one?

Sorry about the MUGA. There always seems to be some area of our body that wants special attention. Give that heart what it needs and it will respond, just like your brain and other "places in need."

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I am sorry Brenda. I hope the meds and a healthy diet get your LVF up and over 50 in the next week weeks, so you can start T DM1 then.

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Thanks my friends... yes, I may be in the market for a new crapstick, Steph.

Jackie, I am in Austin. All of my scans are being done here, just treatment in Denver. So, I have canceled my plans to fly there in the morning. Will try again in 3 weeks.

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I plan to be re-ECHOed/or/MUGAed in 3 weeks, after doing all the stuff listed above to help increase my percentages, and continuing them so that I can stay in trial. I wish it were just the wonkiness of my MUGA, but it matched the exact % of my ECHO that was done 7 days prior, so I think it is probably correct...

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I think that walking or hiking everyday makes a huge difference. CoQ10 will also help. The omega vitamins, too. I am sending good hearts to you!!! xo Flori

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Brenda;
Rats, rats, rats. I am really hoping the exercise and COQ10 will bring the EVF to 50. I'm passing along my best wishes and prayers that you'll get to those levels in 3 weeks. All my exercising I will pass along to you as support. I wish I could virtually give it to your heart.
Hugs,
Kris....

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Hey Brenda,
Thinking of you today. Let me know when you're free. Ayden goes to Disney World for spring break.....maybe then? You're the best! ma

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Brenda:
Damn it! If it's not this, it's that! That's how cancer likes to roll. I hate this setback for you after having so much invested in getting into the TDM1 trial.

I will keep a vigil of good vibes for your ticker to improve asap.

I'm on hold for my last dose of TDM1 due to low platelets. Hope to get back on track next Wednesday.

If anyone has some extra platelets they are not using, could you send them my way!!!

Sending my best and looking forward to sharing TDM1 experiences with you SOON!!!!

Darlene

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ARGGGHHHHH!!!!

Brenda,just wanted to let you know I have come up with a mantra I'll be using on your behalf..EF 60...EF 60...EF 60...