Re: Just a little brain surgery...
 

Praying that you'll be fully mended soon with headaches and brain mets finally behind you. From one craniotomy survivor to another -- cancer sucks!! Joan

Re: Just a little brain surgery...
 

All you chickadees, thanks for your thoughts! I will keep on keeping on, for sure... Just wanted to let you know where I've been and maybe, just maybe, there will be something in that story that others can learn from. I think the double radiation to that area, is a good starting point. The second time it was radiated was because the trial doc in San Antonio (who I DIDN'T go to, I went to Denver instead. They ROCK in Denver by the way) thought it was tumor and used a questionable MRI spectroscopy as an additional tool. We didn't believe it to be tumor at all (and we were right), but out of an abundance of caution, we re-radiated it, not knowing that it might lead to necrotic spread.

As I said, I hope there is something in this story for someone to take something from.

Re: Just a little brain surgery...
 

Brenda - you have just rewritten "The Perils of Pauline" squared! Tie you to the RR tracks? No problem - it is the train that will take a beating ...

Live and learn, live and learn. If we all knew now what we should have known a couple of years ago, things could be different.

Let's hope all will settle now and forever with this brain surgery. You know I got the infernal cerebral fluid leak and they had to go in again and fix that - but it was not due to the surgery cavity, just that the closure of my sub-scalp did not hold.

I did NOT put up with the chatter in the hall/nurses station. Closed my door and asked the staff to "keep it down, so patients may rest." After just five days I was almost beside myself from sleep deficit, can't imagine 12 nights!

Re: Just a little brain surgery...
 

Brenda, My jaw actually dropped reading your post. You are amazing, I need some of your bravery! You really are an inspiration and thank you for letting us know that its possible to come thru all of that. Very best wishes for a speedy recovery.

Re: Just a little brain surgery...
 

Oh, I didn't put up with the hallway chatter at all. I had the curtain pulled and the door closed. But at night, they had to come in to check my breathing, pulse and temp every 2 hours. And to hook me up to my liquid antibiotic, based on my surgery time, which ended up falling at 4am... so no sleep in the hospital for me.

I knew that about yours, Steph... and I hoped I could avoid it. Well, so I did, I took the other way around and decided to even make it scarier. Heh heh heh. Yikes!

Re: Just a little brain surgery...
 

You are an inspiration.

Re: Just a little brain surgery...
 

Wow Brenda what a scary experience for you and one you'll remember I'm sure, sending good thoughts for your continued good healing!

Re: Just a little brain surgery...
 

I learned hope is really endless!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Thank you Brenda for keeping us up to date! what an awesome out come. God is good all the time!

Re: Just a little brain surgery...
 

You are an amazing woman, Brenda. Glad to hear from you.

Amelia

Re: Just a little brain surgery...
 

Wow, every time I think I've heard it all, something new crops up to take my breath away! How scary to have gone through all of that and yet here you are sounding amazing and humor fully in tact :) I am on tdm1 as well and my platelets have been dropping. My onc called the study to see what the cut off is (75,000) to be able to have chemo. I was just above that and hope to try and stay there! But its good to know about others who are having this same effect from tdm1.

I also have a "blob" on my brain showing up, but not showing up in the typical way a cancer does- its remained stable and has not grown and I have no symptoms. New scans are scheduled in a week and we will see.

So yes, thanks for all of the insight, I can glean a lot of info from your story! You are a true warrior and I am inspired by you and your story. I wish you well on your healing and recovery!

Re: Just a little brain surgery...
 

Gosh Brenda
Just got home from being in hospital myself for a week again and read your post.
What a brave and inspiring woman you are! Not only brain surgery but a trip for T-DM1.You have always inspired me from joining the board and you continue to do so.
One thing that has become very clear to me being in a ward of very ill ppl with a variety of cancers is that whilst bc is c**p compared to other tumours there are many more treatment options available for us!
Soon I believe we will have the tools to keep the beast at bay!

Will remember your post next time I feel wimpy!
Hugs
Ellie

Re: Just a little brain surgery...
 

Just adding my "wow" to the list. You are a great example of keeping the faith, no matter what!

Re: Just a little brain surgery...
 

Yeah, Brenda - they sure do come in and check vitals, etc all the time day and night! I seemed to get a little used to that routine and asked my night nurse to be as quiet as possible when she came in. They would try, so that was nice.

A double dose of brain surgery IS the pits. But not painful, at least mine wasn't. Probably the least painful procedure I have had so far!

UGH! but glad you're okay now!Re: Just a little brain surgery...
 

Yowze, Brenda!
There are NO WORDS, I'm just so glad that all of that
is behind you, and more so, so so glad you are one the mend.
You are an amazing woman, a total warrior.
And so thrilled that you were able to get your TDM1 - just hope it doesn't create complications for you.

Here's to 2012 getting better and better and better for you!

(Mine has started of a little crummy - Halaven stopped working somewhere between week9 - week18, so I've switched treatments again. just need something to hold me over til Pertuzumab is approved. and then there's the matter of my repeat brain mri to look at a suspicious spot, discovered 8 weeks ago, near the one that I had novalis'd in summer '10...crossing fingers,toes,eyes,nose)

Keep the Faith~
Jessica

Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?
Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion.
R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.

Re: Just a little brain surgery...
 

Hey, Hucklebuck! I have been off the boards for a week or so due to the death of my Pop. I was shocked to read your newest saga. So this was the same pesky issue that got you kicked from doing TDM-1 in San Antonio? Major crap on a crap stick!

Ya know, Hutch, I beginning to think you are just trying to get your signature to take up the entire page..... :)

Re: Just a little brain surgery...
 

Oh my gosh Brenda I am just now reading this.

My heart was in my stomache while reading. I am so glad that you are doing so well.

Sending good vibes and prayers for your recovery.

Re: Just a little brain surgery...
 

Hey there, Hucklebuck! I hope you're having a good day. Please accept my cyber hug. You're something else, sugar. Love ya, Bill

Re: Just a little brain surgery...
 

Thanks again, ya'll. Wonderful words from wonderful folks! Ha ha Laurel, very funny! (and so very sorry to hear about your dad).

Steph, it is true, very un-painful, I have to say! Nerves are trying to knit together, etc, so I get the occasional ping of 1 second pain here or there, but it only happens 3 or 4 times a day.

JML and Sheila, I so wish that Halaven was holding folks... c'mon Pertuzamab and FDA, HURRY!

Re: Just a little brain surgery...
 

Brenda, you are my hero. I am speechless-ish. Eyes tearing and so glad you are on the mend. Don't have any platelet info but like Rich, I can't believe you got on a plane. Way to be a warrior. You just snapped me out of my scanxiety. Petscan-shmetscan. Sending love. Flori

Re: Just a little brain surgery...
 

I so wonder that some publisher passing thru these woods hasn't snatched you up and demanded that you write your story intertwinned with your amazing adventures. I just see me watching your story on TV with timeouts for tears and laughter. I didn't think you & your story could become even more amazing.....but, you have.
Here's to better days and more laughter.