The Leukemia & Lymphoma Society Community: Message List

Re: Feeling down

communityreply@lls.org — Wed, 15 May 2013 15:53:09 GMT

Hi Pin,

Your results seem similar to mine. It's hard not to get upset about increases no matter how small they are.

http://community.lls.org/message/162654#162654

Rissa

Re: generics

communityreply@lls.org — Mon, 13 May 2013 20:26:21 GMT

Not sure what you're asking. Imatinib is marketed by Novartis as Gleevec. It is under patent protection right now and won't go off patent until 2015. Other CML drugs will take even longer to go generic. Hope that helps.

Re: Circumin : Who is using it and which TKI are you on?

communityreply@lls.org — Sat, 11 May 2013 02:54:44 GMT

I was taking curcumin shortly after dx, then I ran out and just didn't buy another bottle. Then my PCR started going up. I started taking curcumin again a month before my last test and my PCR went down. Coincidence? I don't know, but I don't think I'll ever stop taking it again.

:-)

Re: Circumin : Who is using it and which TKI are you on?

communityreply@lls.org — Fri, 10 May 2013 18:45:02 GMT

I take Jarrow Formulas Curcumin 95, 500mg once daily with dinner along with C, D, B-12, multi B, iron, and a multivitamin. I take my 400mg gleevec with lunch.

Re: One yr vacay from Onc

communityreply@lls.org — Fri, 10 May 2013 14:24:32 GMT

You do what's right for you Susan. I applaud those who've taken that leap of faith and quit their TKI drugs. They are truly inspiring. I haven't reached a consistent undetectable status yet, but even then I don't think I would quit taking gleevec. Each and every one of us is different and there is no way to predict how we will do if we quit our drugs. Some may do incredibly well and never have to worry about CML again, and others may not be so lucky. With some, the CML could come back more powerful than before. It's a roll of the dice in my opinion, and I'm not a gambler.

Re: My journey into TKI cessation

communityreply@lls.org — Wed, 08 May 2013 13:37:20 GMT

Outstanding! You and Joel give us all hope!

Re: I feel like I'm always being picked on

communityreply@lls.org — Tue, 07 May 2013 14:40:19 GMT

Oh Billie, I don't have anything wise to say. You just sound so down I wish I could give you a big hug. When it rains it pours, right? That's the way it feels sometimes, like if one more thing happens, we'll just snap, or break, or crumble.... But for some reason, it always seems to get better.

Re: Dosage Reduction Experiment

communityreply@lls.org — Mon, 29 Apr 2013 19:18:30 GMT

That's wonderful! Good luck to you John.

Results - should I be worried?

communityreply@lls.org — Fri, 19 Apr 2013 19:08:37 GMT

Just wanted to send out an update. My latest results are .02, so my onc said he's keeping me on gleevec for now. So no trip to Hopkins yet..............

Very happy with this result!

Re: Sleep Aids with CML & TKIs

communityreply@lls.org — Mon, 25 Mar 2013 14:33:27 GMT

Yogi bedtime tea and Tazo rest tea work pretty good. I usually use two tea bags per cup. Both teas contain valerian root which is a natural sleep inducer.