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Is anyone here taking Revlimid? If so please share with me

Posted by packgb19 @packgb19, Jan 16, 2020

Today I took my 1st pill 20 Mg., please share your thoughts and how its working for you my friends.
Patrick from IL

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montauk | @montauk | Sep 24 10:19am
In reply to @jeffreykassover1 "I have MDS with the 5q variant and another variant as well. Taking Remlivid for the..." + (show)
Profile picture for jeffreykassover1 @jeffreykassover1

I have MDS with the 5q variant and another variant as well. Taking Remlivid for the second time... so far, no effect. Transfusions are given about regularly when I am below 7. Told to hang in there, but not seeing any results is frustrating.

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On 10 mg Revlimid for 5q for 3 months.

Zero positive effect.

Still require blood transfusions.

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jeffreykassover1 | @jeffreykassover1 | Sep 24 11:09am
In reply to @montauk "On 10 mg Revlimid for 5q for 3 months. Zero positive effect. Still require blood transfusions." + (show)
Profile picture for montauk @montauk

On 10 mg Revlimid for 5q for 3 months.

Zero positive effect.

Still require blood transfusions.

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Me too...just finishing 1st round at 10 mg....tried Rimlivid before with no results. trying new protocol. Waiting for results will be transfusion-dependent, sucks. But...not many options left.

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montauk | @montauk | Sep 24 4:35pm
In reply to @jeffreykassover1 "Me too...just finishing 1st round at 10 mg....tried Rimlivid before with no results. trying new protocol...." + (show)
Profile picture for jeffreykassover1 @jeffreykassover1

Me too...just finishing 1st round at 10 mg....tried Rimlivid before with no results. trying new protocol. Waiting for results will be transfusion-dependent, sucks. But...not many options left.

Jump to this post

@jeffreykassover1

I find it interesting so many people get almost instant positive results with Revlimid,

I certainly am not in that positive population with 5q disease.

Some statistics show Revlimid works 68 percent of the time.

That means it does not work in 32 percent of patients

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jeffreykassover1 | @jeffreykassover1 | Sep 25 9:16am
In reply to @montauk "@jeffreykassover1 I find it interesting so many people get almost instant positive results with Revlimid, I..." + (show)
Profile picture for montauk @montauk

@jeffreykassover1

I find it interesting so many people get almost instant positive results with Revlimid,

I certainly am not in that positive population with 5q disease.

Some statistics show Revlimid works 68 percent of the time.

That means it does not work in 32 percent of patients

Jump to this post

Thanks! Well, just finished 1st cycle for the 2nd time, trying Remlivid at different dosing. Hoping for better results this time.

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janetlen | @janetlen | Sep 27 9:58am
In reply to @jeffreykassover1 "Thanks! Well, just finished 1st cycle for the 2nd time, trying Remlivid at different dosing. Hoping..." + (show)
Profile picture for jeffreykassover1 @jeffreykassover1

Thanks! Well, just finished 1st cycle for the 2nd time, trying Remlivid at different dosing. Hoping for better results this time.

Jump to this post

@jeffreykassover1 I hope the 10mg dose works for you as well. My Dr took weekly blood tests the 1st 8 weeks. Has your Dr had you take the weekly tests?

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