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Old 03-09-2013, 02:30 PM   #61
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

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 03-10-2013, 04:57 PM   #62
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

I have been traveling and doing appointments and home for a short time. Meanwhile other family members have been busy researching for answers.
It seems that methotrexate given parenterally through her vein port and the depocyt through her ommaya could possible bring good results. They seem a good combo for irradiating tumors in the spine. It claims methotrexate clears the spine better given intraveneously than intrathecally to remove the growths when given in combination with the depocyt.

So maybe we try that next. Will run it by the doctor.

This is the info on mtx

Numerous reports suggest that systemic therapy improves survival for patients with LM.72,93- 100Some authors feel systemic therapy is the most important part of the treatment of LM73- 74and exclude intrathecal therapy in patients with responsive cancers.94- 95,97,101Agents capable of producing adequate CSF concentrations following systemic administration may benefit patients with LM.

Methotrexate.Methotrexate inhibits dihydrofolate reductase and the synthesis of purine nucleotides and thymidylate, interfering with DNA synthesis and repair. At high doses, methotrexate has favorable CSF penetration. A prospective, nonrandomized study comparing intrathecal methotrexate (n = 15) vs high-dose systemic methotrexate (n = 16) in patients with LM produced provocative results. High-dose methotrexate (8 g/m2over 4 hours) resulted in a mean peak concentration of 17.1 μmol/L in the CSF; cytotoxic CSF methotrexate levels remained measurable much longer than with intrathecal dosing. Furthermore, there was higher CSF tumor cell clearance and survival was longer (13.8 months vs 2.3 months, P = .003) in the systemic methotrexate-treated cohort.102Because of the favorable pharmacokinetics of high-dose methotrexate, further studies in patients with LM are warranted, possibly in combination with other agents.

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Old 03-11-2013, 12:06 AM   #63
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

Lani has posted a new abstract on the procedure: http://her2support.org/vbulletin/sho...t=methotrexate

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Old 03-11-2013, 04:51 AM   #64
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Re: Intrathecal Herceptin/Topotecan for Leptomeningeal Disease

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,
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Old 03-14-2013, 06:10 AM   #65
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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   #66
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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   #67
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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
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Old 03-14-2013, 09:11 AM   #68
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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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brain mets, her-2, intrathecal

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