Started Intrathecal Herceptin Today
 

Hello beautiful ladies (and gentleman) of the HER2 board - its been a while since my last post when I wrote in to mention that I had started a high-dose Tykerb regime to see if we could get the brain mets under control. I had Gamma Knife to 3 brain mets in January and my recent follow-up scan showed that all previously treated brain mets have responded beautifully.

The problem is that I keep getting more brain tumors. This week's scan showed 4 new ones (all 6 mm or smaller). So they think that because I keep getting them and many tend to be in the cerrebellum, I likely have cancer cells in my cerebral spinal fluid. Two of these new ones actually appear to be outside of the brain tissue itself and in the lining. So, with that assumption, I had a spinal tap today which withdrew fluid to test for the presence of cancer cells. I also had my first administration of intrathecal herceptin. Since it looks like the Tykerb (even at high doses) isn't getting the job done, we are trying a new approach. I'm going to be receiving these injections every 2 weeks.

It wasn't painful at all and so far I'm feeling fine - no headaches (knock on wood).

I'm greatly encouraged by Lani's recent post about a case study where someone achieved NED in the CNS through intrathecal herceptin (as determined at autoposy - death was unrelated to CNS mets). It can be done and I believe I am just the girl to do it! I will keep y'all posted as I learn more and go through this treatment.

In other good news - the Gemzar is likely working on the lung/skin progression I had in February. I'm totally asymptomatic on the lungs and the skin lesion is melting away. Woot woot. I'll take that as a good sign. Now, just need to get the brain to cooperate.

In non-cancer news, my darling husband Jay and I just got back from 3 amazing weeks in New Zealand! I'll update my signature picture with one of me backpacking the Routeburn track in the South Island - it shows me happy and feeling good despite all this cancer bs.

The trip was amazing! We climbed a glacier, swam with dolphins in the ocean, kayaked a national marine reserve, rafted through a cave full of glow worms, white-water rafted, jet boated, went on a helicopter ride, backpacked through two national parks, and stuffed our faces with good food and New Zealand's best sauvignon blancs and pinot noirs. Life is good and cancer can suck it!

Love to you all.

Re: Started Intrathecal Herceptin Today
 

Oh wow my friend. What a path you are on... you are absolutely my brain mets mentor. Thanks for keeping us up to date on your status and treatments. Are you discontinuing the Tykerb then?

Prayers for you and the success of this protocol. Please let me know if there is anything I can do for you... even at a geographical distance!

Re: Started Intrathecal Herceptin Today
 

Courtney what a fabulous update!!! You inspire me and believe it or not I an totally smiling and feeling woot woot right with you. New Zealand had the same effect on me and reading your post made me remember with you how good life is, cancer be damned!

Thank you for sharing and I await your success story on the intracathal treatment. I I spelled stuff wrong it's the iphone's fault.

Re: Started Intrathecal Herceptin Today
 

Courtney, so lovely to hear from you. I wish you all the best with the new system. Its great that you were able to have a holiday and be 'normal' for a while. Your attitude is just amazing and very inspiring!

Re: Started Intrathecal Herceptin Today
 

Hey Courtney, Great up date... Wow !!!! You put a smile on my face. In my thoughts and prayers.

Re: Started Intrathecal Herceptin Today
 

CourtneyL...you are one great woman :-). Thanks for sharing.

Re: Started Intrathecal Herceptin Today
 

You are the girl to do it! I've been wondering how you are going and so glad a trip to NZ was on the agenda. Go intrathecal herceptin. Love the photo but the pack sure looks big,
Trish

Re: Started Intrathecal Herceptin Today
 

You definately are "just the girl to do it"!!! ma

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Courtney,
It is always so good to hear from you!! The trip to New Zealand sounds wonderful. Of course anything involving beautiful scenery, good food and wine is as good as it gets.

Thank you for charging forward with the Herceptin and sharing the results. So glad to hear the gemzar is doing the trick!!

Although we have to deal with this X*&# cancer, it IS possible to live a full, active life. You certainly are an example of that.

You go girl.....Lori

Re: Started Intrathecal Herceptin Today
 

Dear Courtney;
You ARE going to be the one to do this!!! I am praying and sending healing prayers your way that you get thru the treatment and you achieve NED. Yes, you will get there.
What a lovely vacation you had in New Zealand. Thank you for sharing the experiences; it sounded fabulous.
Thank you for sharing with us. I'll be thinking of you.
Hugs and Prayers,
Kris...

Re: Started Intrathecal Herceptin Today
 

Hi Courtney,
You look so beautiful on your new picture and thank you for your update. Always love to read your posts; you are so inspiritional. Would love to hear your update on the intrathecal herceptin as well. Love, Grace

Re: Started Intrathecal Herceptin Today
 

Hi Courtney

Thanks for your amazing post it made me smile. Good luck with the Intrathecal Herceptin. You are right you are the girl to do it!

Let us know how its going when you can.

With love

Diane
x

Re: Started Intrathecal Herceptin Today
 

Loved reading your update, Courtney, your fighting spirit shinning through!

My prayers and best wishes for great success with the new treatment! Will be looking forward to your updates.

hugs,
shobha

Re: Started Intrathecal Herceptin Today
 

Courtney, you are an amazing young women. I love your post and I find your trip to NZ wonderful. Now I hope this new treatment will get rid of those brain mets for ever. Sending hugs. Michka

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Your new picture says it all! You are such an inspiration! I know that you will have success with the Intrathecal Hercepting!

Kim

Re: Started Intrathecal Herceptin Today
 

Courtney, you are truly an inspiration!! Your post made my day! New Zealand has been a dream of mine for many years. At least my oldest son was able to spend two years there. Thank you so much for sharing your news and please keep us informed. Keep kicking BC's you-know-what! We are all cheering you on with thoughts and prayers. Hugs, TriciaK

Re: Started Intrathecal Herceptin Today
 

Courtney,

I am glad to hear from you. Please, keep us posted.

Amelia

Re: Started Intrathecal Herceptin Today
 

Wow, what a great story and what a great inspiration you are for all of us! Here's to being NED soon.

Re: Started Intrathecal Herceptin Today
 

Courtney,

Go, girl! In being a fellow brain met survivor, you really inspire me.

It's great that you're responding to the treatment, and it seems like you have a really good team of detectives working on your case.

Glad to had a fabulous trip.

Joan

Re: Started Intrathecal Herceptin Today
 

Wow indeed!!! Go for it, girl! Cancer has no chance against the backpacking-water-rafting-kayaking-amazing-you!

Very happy to hear about the Gemzar shrinkage and the Herceptin infusions. Thanks for being such a trailblazer for us!

Love,

Marcia