I will wish you luck on your procedure as well as a prayer for a successful out flow (OOPs) come.
On Wednesday, May 6, 2015 at 3:50:29 AM UTC-5, wa2yyx wrote: > > 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 <[email protected] > <javascript:>> 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 [email protected] >> <javascript:> >> To unsubscribe from this group, send email to >> [email protected] <javascript:> >> 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 [email protected] <javascript:>. >> 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 [email protected] To unsubscribe from this group, send email to [email protected] 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 [email protected]. For more options, visit https://groups.google.com/d/optout.
