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-   -   Just a quick update... (https://her2support.org/vbulletin/showthread.php?t=48902)

hutchibk 03-04-2011 08:01 PM

Re: Just a quick update...
 
I don't have any spare platelets... but maybe you can borrow some tiger's blood from Charlie Sheen?

I will be happy with EF 51 but I like that you are setting my standards a little higher! EF 60 EF 60 EF 60 EF 60!

sassy 03-04-2011 08:11 PM

Re: Just a quick update...
 
Hang in there Brenda. We know you have enough heart to rise to the occasion! Keeping you in my thoughts and prayers.

Sheila 03-06-2011 06:35 AM

Re: Just a quick update...
 
Brenda, did you see the cardiologist and get the drugs? They worked quickly on my, and my heart is older and rustier!!! I am hoping your echo surpasses your muga!!!

Darlene Denise...I will trade platelets for white blood cells....this could turn into a gigantic swap meet!!!

hutchibk 03-06-2011 01:36 PM

Re: Just a quick update...
 
I see the Cardiologist on Tuesday, it's the soonest I could get in... and then I will start the Lisonopril and Coreg... EF 60! EF 60! EF 60! EF 60!

I love the new swap meet we are starting! I'll swap my healthy CBCs for 5-10 percentage points of EF!!

Soccermom 03-06-2011 01:41 PM

Re: Just a quick update...
 
I can spare them Hutchi...cyber sending my extra EF's to you!
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> >>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> EF 60>>>>>>>>>>>>>>>hutchbk@cyberspace.com>>>>>>>>>>> >>>>>>>>>>><3 Marcia

Laurel 03-06-2011 05:56 PM

Re: Just a quick update...
 
Dang, Brenda, this cannot be! You have worked so hard to get into that trial! I am so p'od for you. I'll keep my fingers crossed for you on Tuesday. Praying you are 51 or better, kiddo.

Chelee 03-06-2011 09:34 PM

Re: Just a quick update...
 
Brenda,
I have lots of faith that with the help of Coreg and Linisopril your EF will be up in that safe zone quickly! I know too many ppl on those two drugs and they work really well. So...get prepared for take off...you will be on T-DM1 in no time. You just amaze me...you really do! You are truly an inspriation to me and no doubt so many others here. It's just one of those bumps in the road that was unexpected...but no worries because you will get 'er done! (You always do!) Will be keeping good thoughts for you.

Chelee

Jean 03-06-2011 10:32 PM

Re: Just a quick update...
 
Brenda,
Forget that crapstick.....with your determination and energy you will certainly reach the 60 mark goal. Then
it is off to Denver....

Hugs,
Jean

hutchibk 03-09-2011 08:56 AM

Re: Just a quick update...
 
All I need is 50... but I'll hope for 60!

Mary L 03-09-2011 09:20 AM

Re: Just a quick update...
 
Brenda, Coreg and Lisinopril worked wonderfully for me. My EF would go down after a few months of Herceptin and I would take the medication and a short break and it would come back up. Best Wishes. Mary L

hutchibk 03-09-2011 05:31 PM

Re: Just a quick update...
 
I can't take Coreg... yet. My heart rate showed up as slow on the EKG and Coreg could prove deadly, so I have to wear a heart monitor for 24 hours to see if it was a true reading. If it was only a blip, then I can take Coreg, too... in the meantime I am only on Lisinopril and crossing my fingers it works!

Chelee 03-09-2011 06:32 PM

Re: Just a quick update...
 
Brenda,
Well darn it all! It's always something isn't it. I can tell you that Lisinopril is a really good drug on it's own. It has literally been a life saver for my MIL which probably wouldn't be here without that one drug alone. Lets hope your EKG was just a blip and all is fine once they check your ticker for 24 hrs. Your medical team will get this figured out for you...I just know it.

Many of the blood pressure meds take up to two wks to work...but it seems the Lisinopril makes a difference right away. :) So I'll been keeping possitive thoughts and prayers for you. Keep us updated.

Chelee

Laurel 03-09-2011 06:49 PM

Re: Just a quick update...
 
So Brenda, when will you be able to have your muga/echo again? Had to sign on tonight just to see what has transpired with you today with the Cardio doc. Do you need to be on this drug for a week or two before they redo the muga? Maybe all that clean living, no caffeine, beer, etc. has slowed your ticker! Go visit Starbucks. That motor oil they sell will get your ticker racing for sure!

Keeping fingers crossed for you, my friend. How'd your Spurs fare this season?

hutchibk 03-09-2011 10:53 PM

Re: Just a quick update...
 
Thanks Chelee... I get my next ECHO on March 22, after being on Lisinopril for 2 weeks, hoping to get my first TDM1 on March 25. Crossing all my fingers, toes and eyes...

Actually Laurel, I'm not supposed to have ANY caffeine or alcohol... as apparently they compromise the heart muscle.

My Spurs just happen to be #1 in the NBA right now... nice year for my boys. Hope they go all the way!

Sheila 03-10-2011 06:33 AM

Re: Just a quick update...
 
Brenda...just remember they have to overcome da Bulls, again....just sayin~~~

hutchibk 03-10-2011 09:23 AM

Re: Just a quick update...
 
Yeah... I know, Sheila. Da Bulls are getting pretty feisty right about now, and we see them next Tuesday! I have tons of respect for 'em, but they are young and not quite playoff/finals tested enough just yet. Sorry Boozer went down last night, that could be a bummer for Da Bulls.

Missyw 03-10-2011 09:36 AM

Re: Just a quick update...
 
Thank you for the update. I wish you all the best with the new treatment. Lots of prayers coming your way!!

Laurel 03-10-2011 04:53 PM

Re: Just a quick update...
 
Hey Brenda and Sheila,

Lovin' the b-ball trash talk! Well since alcohol and caffeine are out, how about spicy foods? They rev you up, too! Sean Connery used to get my heart to beat faster, of course that was before the AIs......

Joan M 03-13-2011 01:44 PM

Re: Just a quick update...
 
Brenda,

Sorry to hear about the heart test results and your having to postpone the T-DM1. It's always something! With the right attention your heart should spring back soon. Keep us posted.

Joan

hutchibk 03-22-2011 08:02 AM

Re: Just a quick update...
 
I got my ECHO today and it's at 53%!! Whew! Yippee! I'm going to Denver on Friday to get my first TDM1... hallelujah!

Ellie F 03-22-2011 08:23 AM

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

Ellie

michka 03-22-2011 08:57 AM

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

chrisy 03-22-2011 09:27 AM

Re: Just a quick update...
 
thinking 'bout you today on the echo....60....60...60...

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

hutchibk 03-22-2011 09:42 PM

Re: Just a quick update...
 
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).

hutchibk 03-22-2011 09:43 PM

Re: Just a quick update...
 
Chrisy, I have some little side plates that I call "platelets" ~ but I guess those won't really help, huh? ; )

StephN 03-22-2011 09:44 PM

Re: Just a quick update...
 
Just GREAT!

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

Jackie07 03-22-2011 11:25 PM

Re: Just a quick update...
 
Brilliant!

Trish 03-23-2011 12:05 AM

Re: Just a quick update...
 
Fantastic, enjoy the trip.
Trish

Chelee 03-23-2011 02:04 AM

Re: Just a quick update...
 
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

hutchibk 03-23-2011 07:54 AM

Re: Just a quick update...
 
Hey Steph... good idea... I'll edit the post above w/ the dosages...

Shobha 03-23-2011 09:22 AM

Re: Just a quick update...
 
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

Joan M 03-23-2011 03:29 PM

Re: Just a quick update...
 
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

sassy 03-23-2011 06:17 PM

Re: Just a quick update...
 
Happy Dance!!!!!

mmoons 03-26-2011 04:08 PM

Re: Just a quick update...
 
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

hutchibk 03-26-2011 06:09 PM

Re: Just a quick update...
 
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.

chrisy 03-27-2011 09:38 AM

Re: Just a quick update...
 
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:)

hutchibk 03-27-2011 10:18 AM

Re: Just a quick update...
 
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...

SoCalGal 03-27-2011 11:08 AM

Re: Just a quick update...
 
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

hutchibk 03-27-2011 06:45 PM

Re: Just a quick update...
 
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.

SoCalGal 03-30-2011 02:46 PM

Re: Just a quick update...
 
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.


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