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Lomustine experience

Posted by dgruk @dgruk, Feb 11, 2021

My daughter aged 27 has a pleomorphic astrocytoma and has been under radio/op/chemo/targeted treatment for 6 years. Her latest drug regime is no longer working and she is about to start on Lomustine. Does anyone have experience of using this drug ref side effects? Many thanks, David.

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Amanda Roe | @amandajro | Feb 11, 2021

Hello @dgruk. I see your are interested in connecting with members about Lumustine. Recently, embers @otis123 has mentioned the drug with regard to her husband's treatment options and am hopeful the pair of you can connect.

Do you have any initial concerns with the change in regimen?

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1 reply
dgruk | @dgruk | Feb 12, 2021
In reply to @amandajro "Hello @dgruk. I see your are interested in connecting with members about Lumustine. Recently, embers @otis123..." + (show)
@amandajro

Hello @dgruk. I see your are interested in connecting with members about Lumustine. Recently, embers @otis123 has mentioned the drug with regard to her husband's treatment options and am hopeful the pair of you can connect.

Do you have any initial concerns with the change in regimen?

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...no concerns over regime, just wanted to hear of other experiences. I will look up otis123. Thanks...

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otis123 | @otis123 | Feb 12, 2021

My husband has Glioblastoma first diagnosed in 10/2019. We were looking into clinical trials at Duke in NC. He did not qualify for the trial we wanted, and they recommended Lomustine as an alternative. We have not gone that route yet and are not sure we will. We are going to try Keytruda with Avastin and more radiation. Sorry I can't really help you. You can google the drug and the side effects that are possible don't sound great, but then not everyone experiences all of even some of the side effects of any drug. If I learn anything I think will help you, I will certainly share it. Good Luck!

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youngwoman | @youngwoman | Feb 14, 2021

I have had GBM and I have taken Lomustine you are young I am 52 I tolerated well just sometimes nausea and constipation which is generally with other medications too. I am sure you will too, have faith in yourself and god and PCP it will be fine that was my experience.

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1 reply
dgruk | @dgruk | Feb 15, 2021

...thank you @youngwoman and @otis123. I now have a better picture of what to expect and we are hopeful as ever. Many thanks again, David...

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otis123 | @otis123 | Feb 15, 2021
In reply to @youngwoman "I have had GBM and I have taken Lomustine you are young I am 52 I..." + (show)
@youngwoman

I have had GBM and I have taken Lomustine you are young I am 52 I tolerated well just sometimes nausea and constipation which is generally with other medications too. I am sure you will too, have faith in yourself and god and PCP it will be fine that was my experience.

Jump to this post

Have you had an MRI since taking Lomustine and did it show a reduction in your tumor?

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