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Old 09-22-2006, 07:17 AM   #1
Shahyan
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Join Date: Apr 2006
Posts: 19
Dear all - need info on clinical trials

Hello,

As i previously posted, my mother has had her mets progress in the brain even after WBR and Temodar. It seems the only option left for us is to enroll mom in a clinical trial for Lapatinib. We are already talking with organizers of the clinical trials in Boston. Although, my mother may just qualify, we were told that other costs relating to the trial maybe prohibitive. Only the drug lapatinib is free..Other things such as chemo (Xeloda), hospitalization, scans, doctor visits etc will be charged as my mother is not a US citizen and does not have relevant insurance to cover basic procedures. We have no problem in bringing my mother to the US from Pakistan, however we may not be able to afford costs (the clinical lady said she could not even calculate the costs). Has anyone been in the same situation that I am in now? Does anyone know how we can get these costs reduced or get my mother insurance. We do not expect things to be free, but the costs they suggest run in the hundreds of thousands of dollars.

My mother is however a canadian citizen. However, since she is a non-resident we can not even apply for trials in Ontario. Does anyone know if this is possible for a canadian citizen to be eligible for insurance even if she is not a canadian resident?

Any help or information will be highly appreciated. Thanks alot for all your help. Seriously I would not know what to do or even think of clinical trials without HER2SUPPORT. THANKS!!

Shahyan
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Old 09-22-2006, 09:47 AM   #2
Cathya
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Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
Shahyan;

I have made an inquiry with the Canadian Life and Health Ins. Assocation regarding any exceptions or suggestions they might have regarding your mothers need for a clinical trial here in Canada. Their website is www.clhio.ca . On the US front, I am wondering if her existing scans and reports could be emailed to a US hospital for the clinical trial. This might save at least some money. Unfortunately I have heard from a woman at my own hospital, the General in Ottawa, that even herceptin is not widely available in Pakistan. There is a clinical trial (although I don't know if it is still open) of lapatinib at the General Hospital in Ottawa.

Best regards,

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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