Hello there fellow CML Survivors: My 1st question: Does anyone know about the patent on Gleevec and if it's about to expire? I was thinking it had up till this month, or the last time I saw the information on it, I thought their extension ended sometime in May of 2015. I don't remember where it was that we could go and look at that information. I told my husband that I thought for sure the price would drop on Gleevec by now, but from what I've seen from some new cases, it looks as if it's increased in price. Course, I didn't see the quantity that the price was for, that could make a difference, I'm sure.
2nd question: How many TKI's are there now for CML (approved and also those in trials)? There are two groups I am in on Facebook and so many new cases being dx'ed every day that it's just unreal. I get upset with some of the CML Survivors in these groups and what they will tell these newly dx'ed people who seem scared to death & looking for good information. I even talked to my doctor about some of this stuff that they are saying. One told a new dx'ed person that his doctor told him when he was first dx'ed, "well, will put you on this drug (didn't specify which one) and you will take it every day. This and this will happen and you'll be cured within a year." I about came unglued when I read that. And, I made sure in my comment to this newly dx'ed person when I was trying to uplift her and give her advice of what I went through and what helped me over the past 11 years that I would be very leary of any doctor who told me that I would be "cured" in a year! Infact, I would be finding another Hem./Onc quickly. I told her that as far as I knew, there still is no cure for CML that they know of. That these drugs are too new and not enough research to let them know if it might be a cure one day. I told her that you can become "undetected" or "non detected" after being on the TKI's after some time. I told her that I call it a "drug induced remission" (those are my words, not a doctors, lol). There are these "so called experts" who have CML and looked at all the info and try and tell the new ones that there's studies going on and some seemed to be cured. (that's false information) My doctor told me (and I have read the info, too) that the one study that was done in England, I believe it was, had several go off their Gleevec. Within a year's time, 50% had their CML return. I'm thinking that discussion I had with her (doctor) was about 2 & 1/2 years ago when I asked to lower my Gleevec dosage. I always mention this group to those in the groups on FaceBook. I tell them that after I was dx'ed in January 2004 & started Gleevec soon there after, I thought I was going to die because of the awful side effects. I said that I spent most of my time lying on my living room sofa or before the throne in the bathroom. After about 4 months of this, I accidently run upon this group(CML Hope) on line and it is what "saved" me. Back then, I think Gleevec was the only drug at the time besides the trials for Tasigna & Sprycel. We all had each other to help & we did. Whatever we found that helped relieve a certain side effect, we shared. What worked for trying to keep food down, we shared. If someone needed help explaining all the tests and those numbers, we shared. So you see, I still appreciate each and every one of you. I miss those who've gone on before us. God bless you and please have a wonderful day today. Thank you Keep Looking up, Breath in, Breath out, Move Forward, Suzieq -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
