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Old 03-09-2013, 02:30 PM   #1
schoonder
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Ev,
It's all so difficult, too difficult. Wonder if Genentech could be of any assistance, maybe make either drug available for compassionate use. Anything to help turn the tide.
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Old 03-11-2013, 04:51 AM   #2
NEDenise
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Ev,
No new advice...just wanted you to know that I'm thinking of you and Susan...and praying for strength, continued love, and a quick reversal of all those symptoms!

Just for the record...I pray for a CURE everyday...and Susan's name is in the litany...believe me!

With love,
Denise
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Old 03-14-2013, 06:10 AM   #3
alexandra1
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Im really flipping out. The doctors more or less yesterday said that my wife is about to die. They more or less said they are throwing the kitchen at the cancer. Her brain is building up fluid and were gonna hopefully have a solution for that today so that we can start intrathecal herceptin. along with that they want to give pretuzamed which is a large molecule. They think the brain barrier could be down because of the disease. They also said that the cancer is resilient to radiation and has now becoming resilient to chemo's The first thing we need to do is take care of the fluid backing up so that she can get intrathecal. The second question is im looking for a list of small molecule chemo's I can find one I always end up with the biologics. Im flipping my lid and cant imagine what life is without my wife and how my 3 little girls are gonna handle this.
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Old 03-14-2013, 06:34 AM   #4
europa
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
I am so sorry to read your post. I am going to pray for your wife and your three little girls. I am so sorry you and your family are going through this. I pray that they are able to drain the fluid and give her the IT Herceptin.
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Old 03-14-2013, 06:46 AM   #5
marvass
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
Peter, IT herceptin will work, but you need steroids to clear the fluid immediately. My wife was in a similar situation last year in April, but now she is nearly clear.
Hope you succeed. Praying for you
Mario
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Old 03-14-2013, 09:11 AM   #6
schoonder
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
One can only imagine that organizations like NCI or NIH would provide critical information such as contents provided in prior post to oncologists which are, by their own admission, at road's end. Before throwing in the towel, any KNOWN procedure, even ones that only have remotest chance of working, MUST be attempted. All man-made laws and legalities become pretty insignificant when facing death.
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Old 01-24-2013, 07:13 PM   #7
evlin75
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease
an extra note here- this physician may not take other patients. he is doing this cautiously in consult with other MD Anderson physicians.
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