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CourtneyL 08-17-2011 04:24 PM

Intrathecal Herceptin Update
 
Well there is good news and there is bad news. Being as how I am a glass half-full type of girl, I will start with the good news.

First, my tumor markers have begun to come down since I started Ixempra in June for progression to the soft tissue and lungs. Hooray Ixempra! Keep kicking butt!

Second, last week's brain MRI showed that the two brain tumors I had that appeared to be outside the brain tissue itself have disappeared completely! That's right. After only 5 Intrathecal treatments, these tumors are gone! Miraculous!

The bad news is that the two brain tumors I have deeper in the brain tissue are now bigger - they have doubled in size since May with the largest being 1 cm. And there is also a new 4 mm tumor in the brain - for a total of three.

Fortunately, I already have Gamma Knife scheduled for this Monday, August 22nd and these suckers will be blasted to oblivion once again. Now we'll just need to find a way for me to stop getting these darn things. Its getting really old. I don't like being a frequent customer at the Gamma Knife office.

Thank you as always for your continued love, support and prayers. The ladies of this board have made and continue to make my journey all the more bearable and even enjoyable.

Laurel 08-17-2011 05:30 PM

Re: Intrathecal Herceptin Update
 
Well, Courtney, I see far more cause for hope in your update than for discouragement. How is the Ixempra working out on the lung and soft tissue suckers? Do you tolerate it well?

Good luck with your visit with the "knife." I'll just wish your brain mets a polite "good-bye and good riddance" right now!

KDR 08-17-2011 05:34 PM

Re: Intrathecal Herceptin Update
 
Courtney,
I read your CB page, and am glad you posted here, too. As always, you are an inspiration to all. I love you!
Karen

bejuce 08-17-2011 05:50 PM

Re: Intrathecal Herceptin Update
 
Keep rocking, Courtney!!! Thanks for
being such a trailblazer and positive force of life. May the good news
keep coming and the Gamma knife and Ixempra working!

caya 08-17-2011 06:54 PM

Re: Intrathecal Herceptin Update
 
Good luck on Monday with the Gamma Knife, Courtney.
Hoping all 3 of those buggers get zapped!!

all the best
caya

Joan M 08-17-2011 07:12 PM

Re: Intrathecal Herceptin Update
 
Courtney,

A half-glass full is always good.

Glad to hear that you received some results from the intrathecal treatments. You're a trailblazer. Praying that the rads knock out the other brain mets and Ixempra takes care of the rest.

Good luck on the 22d.

Joan

Ceesun 08-17-2011 07:24 PM

Re: Intrathecal Herceptin Update
 
Courtney, I admire your fortitude...your update sounds very promising for sure. Wishing you great success with the gamma knife procedure. Ceesun

LoisLane 08-17-2011 07:58 PM

Re: Intrathecal Herceptin Update
 
Courtney thank you for always keeping the glass half full.....you are a remarkable young women and may God bless you and be by your side as you continue to triumph over these hurdles. You are right the women on this site are really wonderful and we all give each other so much support and care. Take care. Lois

JennyB 08-17-2011 08:19 PM

Re: Intrathecal Herceptin Update
 
Good luck on the 22nd but I think those tumours know they have their marching orders!
Glad the Ixempra is doing its thing also!
Very happy to hear your positive update.
Jenny

Jackie07 08-17-2011 08:39 PM

Re: Intrathecal Herceptin Update
 
Thanks for the update. GKRS is effective and safe. You will see good result soon.

I'm seeing the neurosurgeon to get his opinion on another form of radiosurgery for one of the Central Neurocytomas near the right side of the Thalamus. So I'll be thinking of you while visiting a similar facility.

ElaineM 08-17-2011 08:45 PM

Re: Intrathecal Herceptin Update
 
Great luck to you on Monday. Keep on putting one foot in front of the other. You do that so well !!!!!!!!

Elizabethtx 08-17-2011 08:48 PM

Re: Intrathecal Herceptin Update
 
So proud of your strength and courage. Sounds like you are on a good path and will have more good news soon! Hugs and prayers!

radiant 08-17-2011 08:49 PM

Re: Intrathecal Herceptin Update
 
Hi Courtney:

Thank-you for letting us know how you are doing. I have been thinking about you - and feeling intuitively that things are going great on Ixempra. Ixempra kicks it to the curb, that's for sure.

I am really sorry to hear about the brain mets. I know completely that you are SO ready to live your life w/out these worries/interruptions.

Hugs,
Kim

hutchibk 08-17-2011 09:05 PM

Re: Intrathecal Herceptin Update
 
Blast away!! And keep on keeping on sister. We do what we gotta do... and you're doing it!

My thoughts and prayers are with you. I agree that you are remarkable.

CourtneyL 08-17-2011 10:24 PM

Re: Intrathecal Herceptin Update
 
Thank you all so much for your kind words of love and support. I can always count on you to lift me up.

I forgot to mention one other potential piece of good news. I just found out the other day that two of the tumors may just turn out to be necrotic! The MRI readers did not look at where I had previously been treated with Gamma Knife so they couldn't have known that it was a possibility. But when the Gamma Knife team saw the scan, they noted that two of the spots are previously treated areas so there is a possibility they are just necrotic cells. I'll have a profusion scan the morning of Gamma Knife to confirm this. Fingers crossed they're just lame old dead cancer cells!

StephN 08-17-2011 11:03 PM

Re: Intrathecal Herceptin Update
 
Dear Courtney -
I am going with the "lame duck" theory. That is what I had - just dying tumors that showed activity. With all the roughing up you have been giving those brain mets, they could not possibly be live mets!

Good news on the other fronts - and that makes me smile for you.

Delaney 08-18-2011 01:06 AM

Re: Intrathecal Herceptin Update
 
Courtney,
More good news than bad news which is always welcome. Thank you for the update, you are always so positive, your posts are encouraging to read. I wish you the very best of luck on Monday and look forward to hearing good news soon. xxxxxxxxxxx

chrisy 08-18-2011 12:02 PM

Re: Intrathecal Herceptin Update
 
Courtney, I'm with Laurel on this - except I see no reason to be polite. That cancer does not belong, kick it's but outta there no apologies needed. And I just read your second post on this thread, about the necrosis - maybe they have decided to just slink away as they should.

I know how it hits you in the face, being a frequent flyer at the treatment center - they should at least give you perks! I was up at UCSF this morning and not only do they all know me ("chris, can you show me your id?") but I am the only patient known to have memorized my MRN (medical record number). I gave directions to 2 other patients looking for the infusion center this morning and indeed, had "fun" doing it. It is a crazy ride.

As my first oncologist said it, "nobody wants to die, because life is so much fun!" No, cancer is not fun, but LIFE can be still be. That's why we fight for it.

You are a real trooper and continue to be an inspiration to so many, including me. Keep focused, one foot in front of the other, and remember to breathe!

Much love
Chris

hutchibk 08-18-2011 02:45 PM

Re: Intrathecal Herceptin Update
 
Courtney, I was also going to ask if any of the brain spots were necrotic? I had this exact back and forth with some docs last year (during my initial attempt to enroll in TDM1 EAP), who WERE NOT my historical radiologist or radiation Oncologist, who looked and my scans and deemed that I had new activity, no doubt about it... even though my historical rads Onc, my historical radiologist and a Neurosurgeon I visited (as I considered having them removed to be sure) had all three compared all my historical scans to the new one and had determined that those two spots had already been treated and what we were seeing was almost certainly necrotic spread... my three doctors argued that point with them repeatedly, yet they stuck to their stubborn opinion.

My rads onc had to treat the new activity in my pituitary area anyway, so he went ahead and blasted them again just as extra insurance, but once he did his own mapping CTs, etc, he knew that they were scar tissue.

That is FANTASTIC news. I wonder if the "new" baby one they are seeing is really a new one, or one that could have already been seen as a punctate/pinpoint on a previous scan that is just now waking up? If so, then it's not brand spanking new, and I like to believe (unscientifically, of course) that all my Tykerb actually protected my brain from future brand new brain mets!

Lani 08-18-2011 03:06 PM

Re: Intrathecal Herceptin Update
 
Courtney, are you continuing on intravenous Herceptin? Many studies show this to be helpful when there are brain mets even though herceptin does not normally cross the blood-brain barrier.

Congratulations on all your good news!


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