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Old 04-14-2011, 07:20 PM   #1
CourtneyL
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Join Date: Aug 2008
Location: San Francisco
Posts: 260
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.
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4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.

Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial

Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED

Send me a PM if you'd like to follow my journey on Caringbridge.
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