CCNU ( CeeNu, lomustine) for recurrence?

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bernadettep bernadettep
(Inactive)

CCNU ( CeeNu, lomustine) for recurrence?

by bernadettep on Sat Dec 22, 2012 05:19 PM

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Has anyone had any success , even short term, with this chemo? Thanks Bernadette

RE: CCNU ( CeeNu, lomustine) for recurrence?

by jdykllr on Mon Dec 24, 2012 06:16 AM

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I would love to hear any success news on Lomustine. My husband will be on it soon along with Avastin. He had recurrance just had his second brain surgery on Dec-7-12

RE: CCNU ( CeeNu, lomustine) for recurrence?

by cpnmorgan on Wed Dec 26, 2012 03:27 PM

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My husband is at nearly 3 1/2 years fighing GBM. He has recurrence going on now and started the CCNU 3 weeks ago. It is too soon to tell if it is working. He also started back on Avastin, and did gamma knife a month ago. MRI is slated for sometime in January.

From what I read CCNU was used primarily in GBM patients before Temodar arrived. Now it seems CCNU is used as a last ditch effort for patients with recurrence. Disheartening.

RE: CCNU ( CeeNu, lomustine) for recurrence?

by Bulley1 on Thu Dec 27, 2012 07:48 PM

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My husband's NO listed 3 other chemo treatments she can use. CCNU was the last . Thinking there is a reason it's the last......... Wondering how cpnmorgan's husband is tolerating the CCNU. Headaches? Nausea? Hope it works, Bernadette!!

bernadettep bernadettep
(Inactive)

RE: CCNU ( CeeNu, lomustine) for recurrence?

by bernadettep on Fri Dec 28, 2012 12:57 AM

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On Dec 27, 2012 7:48 PM Bulley1 wrote:

My husband's NO listed 3 other chemo treatments she can use. CCNU was the last . Thinking there is a reason it's the last......... Wondering how cpnmorgan's husband is tolerating the CCNU. Headaches? Nausea? Hope it works, Bernadette!!

Can you tell me which chemo's those are?

Thanks, Bernadette

RE: CCNU ( CeeNu, lomustine) for recurrence?

by cpnmorgan on Fri Dec 28, 2012 01:24 AM

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Bernadette,

He started the CCNU December 3 and just as predicted 3 weeks later really hit a wall. Fatigued. Nausea. Headaches. Bloody nose issues. His platelet count a month ago was 178,000 and yesterday at 81,000. He was able to get his Avastin chemo but they would not give him the CPT-11 due to his below 100k platelet count.

RE: CCNU ( CeeNu, lomustine) for recurrence?

by Bulley1 on Fri Dec 28, 2012 03:18 AM

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Bernadette, When Avastin/Carboplatin fail she recommends CPT-11, can't remember the second and CCNU last. Said she will support any trials we opt into, but it's up to us to research and choose the trial. We've opted for quality of life this entire journey. Pam

RE: CCNU ( CeeNu, lomustine) for recurrence?

by Bulley1 on Fri Dec 28, 2012 04:44 AM

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Cpnmorgan, Do I read he's on Avastin/CCNU/CPT-11? All three? No wonder his blood work won't allow treatment. So sorry

RE: CCNU ( CeeNu, lomustine) for recurrence?

by cpnmorgan on Fri Dec 28, 2012 01:51 PM

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He has been doing Temodar and Avastin since July when recurrence started. In November Avastin was stopped due a spot believed to be a stroke. However that turned out to be another tumor. Gamma knife treatment was done to zap three tumors and then CCNU was brought on board a week later. He has done Avastin twice since. My husband asked for the CPT-11 to be given but Wednesdays blood work revealed his platelets were too low for both chemos so only Avastin was administered. Next MRI is in two-four weeks. He will also start another round of CCNU next week.
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