Richard, That's what we are all here, to share our knowledge and experiences.
Anyway, I go into the hospital again tomorrow afternoon to have my prostate operation. If everything goes ok then this horrible catheter will finally come out after more then ten weeks. It gave me a uti and I am on Cipro and it seems to have cleared up but I still have to take it for another week. By the way there will be another catheter put in to make sure all of the blood and debris are drained out but for only a day or so. Wish me good luck... 18's, Marty On Wed, May 6, 2015 at 1:13 AM, Richard H <rbhuffm...@gmail.com> wrote: > Yes, the cost of Gleevec has tripled since my first dose in 2002. But, > everything else in my part of the world. Like Marti, if we didn't > have Gleevec or six or seven other choices we would not have a chance to > say, "I will probably did of something else. When I went off Gleevec Nov. > 2006 because of the side effects the only major study (25 people in > England) most had returned to Gleevec in 2 years. I did lose the coveted > "non detected" in about 3 years, but I decided because of the CML groups > with the positive thinkers to see how far I could go. Well, I made it 6 1/2 > years before those counts started a steady climb and was asked to please > return to Gleevec. The statics I am seeing are still claiming only about > 5000 people are diagnosed each year. I would dare suggest that .the > increased new people you are seeing is due to increased awareness of our > band of CMLers that are willing to share our experience. Our CMLers that > precipitate in the doctors conferences letting them know we welcome those > newcomers to ask about our experiences. When I respond to someone it is > always my personal story and what I have learned, at that point I can only > hope another CMler will share their story. > > Richard H. > > > On Tuesday, May 5, 2015 at 10:35:31 AM UTC-5, Suzieq wrote: > >> 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. > -- -- [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.
