A tweak here, a tweak there...

[hutchibk]

Let's see...

Brain MRI results last Friday showed my IMRT targeted spots are all shrinking like they are supposed to, and NO NEW SPOTS! Three have shrunk by 1mm and one by 2mm. He was very pleased. As am I...

I am having a fun time getting used to my new "do" - very odd pattern of hair loss from the radiation beams, and I don't have quite enough hair to really cover it, so when the wind blows I look like I have the mange. It's pretty hilarious, but I have about 25 different hats accumulated, so I just defer to those and all is well. Doc says it might be about a year before I see regrowth in those areas... sigh. Oh well. Just another thing to laugh about!

Started back on my Tykerb this week. So I am on Herceptin infusion every 3 weeks and 1000mg Tykerb daily (4 pills). I did better on 3 pills, that 4th one is activating my bowels again... sigh. Oh well. Just another thing to laugh about!

My TM (CA15.3) is down from 20 on Oct. 22 to 12.8 on Nov. 12!! That is the kind of news I have been needing to hear. Even though my TMs always hover below the "normal" ranges, they still indicate activity when they climb a little, so I am thrilled that the Herc/Tykerb is doing good work. I love hearing that the numbers are going in the opposite direction.

Met with my cosmetic surgeon this week to look at my implant. It's not been doing very well, kind of flattening out. Turns out, I have capsular contraction again, tugging it down flat. So now we plan to do day surgery in February (first chance I have to set aside 4-6 weeks for healing) to release the scar tissue and replace the implant... sigh. Oh well. Just another thing to look forward to... 6 weeks of surgical healing.

In the meantime, I have been looking for ways to climb over the 'fatigue hump' that came barreling into my life about 3-4 weeks after the IMRT. It's true what they say about heart rate, activity vs. sedentary, and endorphins... they do really really really help with the mental, emotional and physical fatigue. It's the initial motivation to put one foot in front of the other and get out the door that is the bugger. But I am doing it, and it feels pretty good.

And that's what's new with me. All's well with a little tweak here and a little tweak there.

[StephN]

Dear Brenda -
Say what?? That is such good news. All but the "mange" part. Oh and the capsular contraction. Are there some exercises you can do to minimize that from happening??

I know there have been some other gals here with that problem. One good thing about a lumpectomy - you can always fill that in without having another major procedure.

Keep up the good work, and I know you will find a way to deal with that "fourth Tykerb."

[Rich66]

Hey mangey one,
What is this CA15.3 you speak of? I know only of CA23.

[Jean]

Hey Brenda,
Mange - Smange...you still must look great!
So thrilled about your great news....I rejoice
in your news.

Hugs,
Jean

[Chelee]

Brenda, That's great news. Nothing like shrinking spots and dropping TM's to put a smile on one's face. Its so nice that the Herceptin and Tykerb are working so well. (Except for the fact you have to take that 4th pill.) That doesn't sound like much fun. But at least you know it's working...that's something. Hang in there. (Sounds like you have the "hat dance" wired.) ;)

Chelee

[madubois63]

Some GREAT news!!!!!!!!!!! Keep laughing the minor stuff. R?emember cancer hates the sound of laughter...

[caya]

Thanks for sharing this great news Brenda! I am happy that both the brain mets and the TMs are shrinking. Good luck with your 'do, being a hairdresser, I'm sure you can be very creative.

all the best
caya

[Ceesun]

Hye Bk.....Terrific Wonderful Awesome news, enough said, sweetie!! Happy, Ceesun

[Mary Anne in TX]

So glad treatment is doing it's stuff! Wish the "little annoyances" didn't go along with it, but I'm so glad things are heading in the right direction! Thank you for making time to let us know. See you in SAT in Dec. ma

[chrisy]

Well Brenda, glad to hear you have so much to laugh about, and that behind that there is so much encouraging news! Can't wait to see the new you in SA. I'll bring the immodium.

[Mary Jo]

Glad your results are laughable and your attitude continues to be outstanding.

God is good.................

Mary Jo

[Julie2]

Brenda,

Glad to hear that Herceptin and Tykerb is doing an excellent job. Keep the positive things going.

Julie

[Colleens_Husband]

Brenda:

I am so proud of you in that you are able to laugh at your new wave haircut. Remember Cyndi Lauper actually chose that hairstyle. The challenge is to convince everyone that you are either avant garde, retro, or the next new phenomena. It is the attitude that lets you pull it off.

Keep up the good fight! You are an inspiration to us all.

Lee

[Joan M]

Brenda,

What? A year before the hair grows back! Is that what I have to look forward to? Me, Ms. Vanity Hair, whose going around with a schmatta on my head to hide the 6-inch stubble line along my hairline from the brain surgery because I refuse to cut bangs because I don't want bangs.

Great to hear your news about the tumors shrinking and the tumor markers going down. I noticed in your e-mail the other day where you pointed out the pattern in your markers. My markers (CA27-29 and CA15-3) have never been elevated either above the normal range, and I should go back and look for any pattern around the time of the lung and brain tumors.

Tomorrow I go for my mask fitting and alignment for the radiation which will start on Nov. 28 (I had better eat lightly on turkey day). And the rads onc suggested I try the rads without Decadron (he brought it up before I got a chance to ask him). He's going to give me a script for it if I need it. There will be five hypofractioned sessions. The machine, Trilogy, is a linear accelerator. I'm going to take another look at your post describing your five days of radiation.

I'm still trying to decide whether to add Tykerb, Xeloda? Decisions, decisions ...

Maryann, pretty funny about cancer hating the sound of laughter.

Joan

[SoCalGal]

Sorry this combo is rough but at least it's working. I also take a probiotic - bio dophilus by douglas labs. It seems to help and at least it puts back what is being depleted. Also - if you are having very bad runs remember to replace potassium and electrolytes. I use vitamin water brand - purple label - "REVIVE" just cause I don't like gatorade. Good news on the brain and the markers.

[mts]

Hi Brenda,

Please know I am thinking about you.

You are like a slinky -always a step ahead in every way !

Also, you are so enviably tall that no one will see the mangy spot...Besides, I have the feeling you don't care what people think.

XO
Maria

[yankeebikachic]

Keep up the great work!
I know what you mean about the tykerb, I am taking 5 pills and on xeloda. Needless to say, I make trips to sam's club for toilet supplies!
Ditto on the probiotics. I take them everyday.
Hang in there!
Beth

[Jackie07]

Nice 'tweaks', Brenda. Thanks for sharing.

BTW, when are we going to have a 'Central Texas reunion'?

[jones7676]

So glad to hear your mets are shrinking! I totally understand!

[WomanofSteel]

Here a tweak, there a tweak, everywhere a tweak , tweak. Sounds like some whacked version of Old Mcdonald. But as long as the farm is strong and healthy...... Glad to hear things are going pretty good. Here's hoping the tweaks work out just as well. Keeping you in my prayers. Jacquie

[Believe51]

....here a tweak, there a tweak, everywhere a tweak-tweak. You always inspire me with your upbeat attitude and pleasant disposition towards this disease. I gather strength and laughter from everything you relay to us. I picked today to sit and reply to this post just for that reason. Today I needed to be inspired and get another belly laugh while relaxing thinking of you specifically.

I am so happy to hear how things are working out for you, well, besides that fourth pill!! Again, you are paving the way for others, Ed being one of them. This combo appears to be working wonders for you and my heart is so full and happy for you.

As far as the mange goes, I will have to make Ed laugh when he gets back up, he really can relate to that. I will have to get stocked up on the toilet supplies as I heed this as a warning! LOL.

Lots of love Sweetheart, today and always>>Believe51

PS: Thanks for giving me ideas of what to send you for the holidays...tehehe!

[Believe51]

Hey, WomanofSteel, I guess warped minds think alike!! LOL! I had this thread opened for a while and you replied during that time.

That too made me laugh. Love you also!!>>Believe51

[Bill]

Hi Hucklebuck! I'm glad things are working for you. As far as the hair thing goes, it's not all it's cracked up to be. I shaved my head a year ago for Nikki as a 'gesture' of solidarity, now I do it on a regular basis. I've discovered many benefits to having no hair. I was going to list them here, but I think maybe I'll start a different post instead. Brenda, keep in mind, gal, that when the wind is whipping around you there's nothing to sting your eyeball when you're trying to focus.

[Vic]

Hi Brenda,

You've got some good things going for you and, hey, the mange look would do well here in L.A.-O.C. for a change, instead of the plastic look. I like Lee's spin on the various ways you can label your new image. You are unique and one-of-a-kind and I'm sure you are workin' it.

As for your tumor markers, they are better numbers than mine and low is good (my last CA15-3 was 38), so you're on the right track.

Good you're checking in with your cosmetic surgeon and your "girls" will be fine.

Your last paragraph about getting out the door and exercising was so motivating to me. I can think of so many excuses, so THANK YOU for kicking my butt on this. My workout clothes are out and ready to go for tomorrow.

You rock, sister. Your tweaks are just what we needed!

Vic

[harrie]

Brenda, I am happy to hear of your good news!! Right on.....

And dont we all have those tweaks here and tweaks there....

When were your implants initially put in? Mine have been in for 14 months and so far so good.

Take care.
Maryanne