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aviv
11-22-2006, 08:54 AM
Dear members,

We just learned that Gemzar doesn't work for mom's mets...
Even though liver mets are somewhat controlled, brain mets keep progressing, and it has come to a situation where it's impossible for her to continue tolerate the headaches, without heavy amounts of steriods.
Basically, after we stopped Herceptin, nothing has been really helpfull. CA markers are rising rapidly... 3 weeks ago ca153 was at ~500, and two days ago we got result of 1066.
We're so worried.

Many pointed me to Tykerb / Lapatinib.
There have been a number of success stories around it- But since it's not registered yet, there's no way to get it / buy it, other than in a clinical trial.

We're based in Israel, and for mom's indication, there's only 1 valid tiral protocol. She may fit to this trial, but she has to (according to the trial protocol) have used Taxotere sometime in the past- and since she had never received Taxotere, getting it now is a pre-requisit for participating in that trial. The problem is that our onc is afraid that Taxotere might be too toxic, too toxic for mom to handle. so we're in a huge dilema... on one hand, there's nothing really helpfull to offer- on the other hand, if we want to get Lapatinib, mom has to take at least 4 cycles of Taxotere.

I tried talking to GSK, in order to buy the drug- the doctors there were very nice, but said there isn't really any way to get Lapatinib other than enrolling to that trial.

I'm really desperate. I know it's not common, but I wanted to ask the people on the list- Does anyone have any leftovers of Lapatinib, something she doesn't need anymore for whatever reason, that can be sent over to us? I would really appreciate if you can let me know.

Many thanks in advance, Aviv.

heblaj01
11-22-2006, 12:57 PM
Aviv,
If it is impossible for you to get Lapatinib in Israel under conditions your mother can tolerate a temporary alternative must be found until Lapatinib is approved (around March 2007 in the USA) & oncologists can prescribe it as they see fit.
The three alternatives I am thinking about (there are probabably more) are:

- Temodar
Xeloda®/Temodar® Effective for Breast Cancer Spread to Brain
http://syndication.cancerconsultants.com/Legacy/Syndication.aspx?TierID=265&DocumentId=38017
- Boswellia Serrata
http://www.her2support.org/vbulleti...ead.php?t=25524 (http://www.her2support.org/vbulletin/showthread.php?t=25524)
- intrathecal Herceptin
This is an experimental use of Herceptin injected in the spine to overcome the brain-blood barrier. Has been successfully used in a single patient in Germany.See some info in
http://patient.cancerconsultants.com/news.aspx?id=36779
http://www.her2support.org/vbulletin/showthread.php?t=26104
Good luck.

aviv
11-23-2006, 08:07 AM
dear heblaj01,

thanks! i will immediately consult our onc about these issues.
Another option we're considering, is traveling to the east-coast, where there are a number of protocols mom can fit. it may be a valid option.
thanks again!
aviv.

heblaj01
11-23-2006, 12:19 PM
Aviv,
I forgot two things about Boswellia Serrata which is a non prescription supplement: a clinical trial & a word of caution.

The clinical trial is described in this link:
http://www.clinicaltrials.gov/ct/gui/show/NCT00243022
Boswellia Serrata Combined With a Low-Fat, Vegan Diet or a Standard Diet Alone in Treating Patients Who Have Undergone Surgery and Radiation Therapy for Newly Diagnosed Glioblastoma Multiforme


The word of caution is about the fact that Boswellia inhibits one of the P450 enzymes that is used by several chemo drugs (such as Navelbine).
So giving Boswellia concurrently with such a drug may reduce the efficacy of the chemo &/or increase its side effects:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=16364338&dopt=Abstract
Analysis of frankincense from various Boswellia species with inhibitory activity on human drug metabolising cytochrome P450 enzymes using liquid chromatography mass spectrometry after automated on-line extraction.

aviv
11-23-2006, 01:43 PM
Thanks heblaj-
Actually, after Herceptin mom received Xeloda, Navelbine, and then Gemzar- none really helped and she progressed on both.
She undergone WBR, which was a reliefe for 3 months or so. and now things keep progressing.
This herb looks very intersting and i'll look into it.
IT Herceptin looks very promising, yet probably nowhere around here.
Of the two other options- lapatinib or temodar+xeloda, do you know which has proven to be more successful? my guess is we have one shot...

pattyz
11-23-2006, 06:23 PM
Dear Aviv,

I've had a good response and 15 month run on Xeloda/Temodar for my currant 8 brain mets. They have shrunk several times and stayed stable. No new lesions have appeared for 18 months.

This is what I'm doing now, as I've had my limit of radiation to treat a prior 16 brain mets.

My dosage has been: Xeloda 1000mg 2x day for 14 days, 14 days off. Temodar 250mg once a day for the first 7 days of the Xeloda, 21 days off. That is just an example. There is no standard protocal, but my onc created this schedule for me.

Maybe this could help your mom until the Tykerb becomes available.

Very best wishes,
pattyz

heblaj01
11-23-2006, 10:08 PM
Aviv,
I am really not qualified to make even tentative assumptions on which treatment has the best chance of working optimally.
Maybe your mother's oncologist could contact the investigators of the Xeloda+Temodar trial to get updated info & second oplnions. Usually published trial results are based on clinical data that may be one year old since it takes sometimes that much time before it gets accepted in peer reviewed medical press. More recent unpublished info may be available from these doctors.

The only comment I can make based on was is public is that the trial of Xeloda+Lapatinib was larger (320 patients) & more advanced (phase III).
So it results carry more scientific weight (until proven otherwise in the case of Xeloda+Temodar).

Other potential sources of info on novel treatments may be available from these research centers in the USA:

Inovative brain cancer treatments at Duke Brain Tumour Center http://www.dukehealth.org/articles/multipage_article_20031105160651415

Brain cancer research at M.D. Anderson:very informative article (may 2006)
This center is also where vaccines have been used as a treatment to extend the life of patients .
http://www.medicalnewstoday.com/medicalnews.php?newsid=43181

Individual oncs specialized in brain cancer who have been listed in this forum:
http://www.her2support.org/vbulletin/showthread.php?t=24024&highlight=brain

Also Dr Keith Black (see bio at :http://www.csmc.edu/pdf/LAMagazineDrBlack-13168.pdf)

P.S. An other anecdotic case has been reported ( unfortunately without info on the chemo used):
http://www.her2support.org/vbulletin/showthread.php?t=24537&highlight=brain

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