So sorry you had to go through that painful time. Glad it got better. You are lucky the hospital took you right in. One my hubby was so sick and we went to the emergency room-- they made him wait for hours to get treated. Glad you are better.
Prayers & Blessings Jeanie 🐟🐟18,s Dx 1/2004 Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 > On May 7, 2015, at 12:23 AM, Richard H <[email protected]> wrote: > > I will wish you luck as well as a successful out flow (OOPs) come. > > Richard H. > >> 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]> 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] >>> 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. > > -- > -- > [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. -- -- [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.
