Started Intrathecal Herceptin Today

[CourtneyL]

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.

[hutchibk]

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!

[chrisy]

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.

[Delaney]

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!

[Midwest Alice]

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

[whatz]

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

[Trish]

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

[Mary Anne in TX]

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

[Lori R]

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

[krisvell]

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...

[GracePang]

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

[Dianedack]

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

[Shobha]

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

[michka]

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

[Kim in DC]

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

Kim

[TriciaK]

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

[schoolteacher]

Courtney,

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

Amelia

[adelay]

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

[Joan M]

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

[bejuce]

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

[Barbara H.]

Hi Courtney,
You just amaze me. I am sending positive wishes that your new treatment works for you. I wouldn't have had the stamina to do all that you did on that trip even before I had cancer.
Best regards,
Barbara H.

[Ellie F]

Courtney
Sometimes someone comes along whose courage takes your breath away. YOU are that someone !!

Ellie

[StephN]

Dear Courtney -
SO glad you were able to take that NZ adventure trip and could work around your treatments.

Getting away and having new surroundings to focus on is very freeing and does our spirit a lot of good.

Let us know about the spinal tap result, and I am glad they went ahead and administered the Intrathecal treatment even without the lab result. Heading off the cells before they have a chance to begin new tumors seems so sensible.

Very happy you have a medical center that has this treatment! I know you are paying close attention to any and ALL possibilities to whup this disease.

[Patb]

What an atitude. You go girl. My best wishes and
healing thoughts with you daily. Keep us posted.
I am so glad the trip was wonderful for you.
patb

[Elizabethtx]

How inspiring! What a blessing you were able to take this trip. Cancer can NOT take away our joy in living! Thank you for the wonderful message you give us all!

[tricia keegan]

Courtney, you brought a smile to my face too as I've always wanted to swim with dolphins!!!!
I wish you every success with this tx and yes, you're just the girl to do it!!!!!

[Gerri]

Courtney,

I Googled 'Amazing Young Woman', clicked on Images and there you were - backpack and all! Seriously, you are an incredible woman and you inspire so many of us. Keep up the fight - there is no doubt in my mind who is going to win this one.

Love and hugs to you,

[Jackie07]

Courtney,

Thanks for the update - especially the wonderful trip part. My 2nd Sister had just e-mailed me to discourage me from going home for our Father's 96th birthday. She did not think I could 'survive' the long flight... I'm going to tell her what wonderful time you've had in New Zealand...

[Though I've also been pondering about getting a webcam instead ... :)]

[KDR]

Courtney, recently checked in to your Caring Bridge page and loved your wonderful piece on how alive your city is and look at you...an inspiration to all...think of you always,
Karen

[ElaineM]

All the best to you in your new treatment. I am keeping my fingers crossed for you.

[Paty]

Courtney,

Great to hear back from you. Sending you hugs and best wishes. You will knock that bad mets out of your body, you are a true fighter. Please keep us posted. Will continue praying for you and all my her2 sisters. Love,

Paty

[schoolteacher]

Courtney,

Hope to hear from you soon.

Amelia

[Laurel]

Woot, wootin' here in Hershey for ya, Courtney! Cancer be damned! Life is meant to be lived. Love the attitude. Sure hope the new regime works wonders on those pesky brain mets buggers!

[Kavy]

Courtney,
You are an amazing young woman who is an inspiration to all of us.
I'm sending prayers that the intrathecal herceptin treatment will get rid of all brain mets for good, and that Gemzar will bring your body to NED as well.
Thanks for paving new options for us brain mets sisters, and for keeping us updated.
Hugs and love,
KarlaV.

[LoisLane]

Thanks Courtney for your update. You are such an inspiration, "cancer be damned". You are full of life and obviously will push forward, strive to enjoy all that our lives have to give us. You really have made us feel so strong today. Best wishes and continued wonderful life experiences for you and your family..

[DeenaH]

Hi Courtney,

You really are such an inspiration!! Your positive attitude is what I remember when I get down. I am so glad the injections aren't painful and you don't have side effects.

How exciting that the Gemzar is working on the lungs again! It must be so encouraging to be able to watch it work on the skin lesion too.

I just know this new Herceptin administration is going to work for the brain mets.

I am so glad you had a wonderful time in NZ. What a dream to be able to go on a trip like that (cancer or no).

[Laurel]

How ya feeling today, Courtney?

[Melissa]

Courtney,

I have faith that this treatment will work!

[schoolteacher]

Courtney,

Just checking to see have you have been.

Amelia

[CourtneyL]

I have great news to share so I'll get right to the point. The results from the spinal tap were negative! They did not find any cancer cells in the cerebral spinal fluid. As you know, this is very good news for my prognosis and treatment. While it may still mean that there could be some small number of rogue cancer cells in there, they couldn't find any.

Since I still have the brain tumors, some of which appear outside the brain tissue, we will continue with the intrathecal Herceptin injections to see if that can keep the existing tumors under control. The plan is to do one injection a month. We'll scan again in a few weeks to see where we're at and we may add the chemo Temodar to the mix if the Herceptin is not enough. I'm not sure if Gamma Knife is on the table yet. I'm trying desperately to avoid WBR but that is an option should I need it.

In the meantime, Jay and I, and my entire family for that matter, are breathing a little easier knowing that the worst case scenario has not arrived.

Words can not express my gratitude to you all for your thoughts, prayers, messages, private messages, emails, notes on my caringbridge page, etc. Its been a rough week or so but the clouds are lifting and there is cause to celebrate. God is listening to our prayers. The universe is sending out those good vibes.

Wishing you all a Happy Easter, Passover, or whatever your springtime celebration may be. I know we will be giving extra thanks this Easter Sunday.

With love and healing light and prayers to you all!

[Chelee]

Courtney,
That is fantastic news! Such a wonderful word "negative" can be. :) I'm so glad you got such great news. I hope the intrathecal Herceptin injections kick butt on those buggers. I will continue to keep you in my thoughts and prayers. Now you guys can relax a little and enjoy your Easter. Thanks for the update...I was wondering how you were doing. Enjoy!

Chelee

[radiant]

Congratulations Courtney!

Wow - that was quick. You must be sooooo relieved.

;-) - Kim

[schoolteacher]

Courtney,

So glad to hear from you. You have made my day.

Amelia

[joyce lutz]

Courtney! I've been looking for you and am so glad to have found you again! I tried to find you on Caringbridge to no avail. Please send me that info if you can. My daughter just had her first SRS treatment on 5 of her brain mets and goes back for them to do the other next week. Can you tell me more about the INtrathecal Herceptin? You can email me at Jjeldance@aol.com! My best to you always
Joyce

[kiwigirl]

Hi Courtney

Wow sounds like you had a great trip down to NZ. You picked the right time of year. The weather has got cold and wet, winter is on its way. Did you manage to get up to the north island?

I've only just been reading these post on Intracthecal Herceptin how is it going?

I'm still recovering from WBR and VMAT all went well and other than losing may hair again I feel good just waiting for my next scan result in four weeks to see how successful it was. For my my next option is to travel overseas for gamma.

I'm going to onc 18 May and going to see if this intrathecal herceptin is an option for me to.

Thank you for being so brave you really are leading the way for others and certainly give confidence for me to try new and improved technology. Hope you feel good, take care.

Regards
Jacqui

[flynny]

What fantastic news! I am so happy for you! I will continue to pray that the intrathecal herceptin works. I feel like it is the key!

[Lani]

hot off the press:

just shows your are a pioneer pushing the limits of the latest and greatest


Bull Cancer. 2011 May 4. [Epub ahead of print]
Leptomeningeal meningitis related to breast cancer overexpressing HER2: is there a place for a more specific treatment?
Gutierrez M, Lyazidi S, Brasseur L, Cvitkovic F, Le Scodan R.
Abstract
Leptomeningeal metastases are very commonly associated with breast cancer. The prognosis is very poor in the short term with an overall median survival less than 6 months. Based on pragmatic and historical considerations intrathecal chemotherapy (IT) are considered to be the adequate treatment. However overall results are disappointing. Despite specific and symptomatic treatment, improvement in survival and quality of life remains very modest, highlighting the importance for ongoing research for developing new molecules or on improving the use a better use of those available today. The incidence of leptomeningeal metastases is particularly marked in cases of overexpression of HER2. The main hypothesis is there may be a better control of extra-cerebral localisations with trastuzumab therefore intra-cerebral recurrences may be encountered preferentially as they are not reached by this high molecular weight monoclonal antibody (148 kD). Analyses performed in the cerebrospinal fluid following intravenous trastuzumab showed extremely low levels of the antibody and support the hypothesis that leptomeningeal metastasis of HER2-overexpressing breast carcinoma remain potentially sensitive to HER2-type receptor inhibition by a target agent under the condition of by-passing the meningeal blood brain barrier. Intra-ventricular or IT administered with trastuzumab would reach high loco-regional therapeutic concentrations in the cerebro-meningeal without risk for normal non-expressing HER2 leptomeningeal tissue. This strategy has been successfully tested on several animal models. A limited number of administrations in humans have been described in the literature, with weekly doses up to 100 mg. No specific toxicity has been described and some data suggest a potential benefit in survival despite the real difficulties for adequate interpretations. Furthermore, a multicentric phase I-II clinical trial, of which the Curie institute is the sponsor and investigating the intra-thecal administration and the efficacy of the trastuzumab will begin very soon. More studies are needed to measure the exact impact of small molecule inhibitors of tyrosine kinase on the leptomeningeal localizations.

PMID: 21540147 [PubMed - as supplied by publisher]