Re: [CMLHope] Re: Questions
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 rbhuffm...@gmail.com 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 rbhuf...@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
Re: [CMLHope] Re: Questions
Happy Mother's Day everyone. Daughter grandson and granddaughter took me out for lunch. Pasta my favorite. 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 10, 2015, at 4:05 PM, 'Icandoallttc' via CMLHope cmlhope@googlegroups.com wrote: 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 rbhuffm...@gmail.com 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 rbhuf...@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
Re: [CMLHope] Questions
Marty, sorry you've been through such a painful time but so glad you are doing better. Thoughts and prayers are with you. 18s Marcie Sent from my iPhone On May 5, 2015, at 2:51 PM, Marty Gartenberg wa2...@gmail.com wrote: HI Suzieq From my understanding The first patent for Gleevec expires in July 2015. This is the earliest predictable date that a generic version could become available. However this will probably be something that Novartis will fight and make some minor changes to it and maybe refilled it again. They will loose a lot of money so you can bet they intend to do something about it, or maybe they will give everyone a break with the cost of it. Only the future will tell. I read your post and I would like to comment on the second statement that you made. First some people just don't know how to speak to people. Even this doctor that you mentioned. They give false and stupid advice especially to the newly diagnosed. By saying that she will be cured in one year is observed and gives false hope. You are correct about her looking for a new onc that specializes in CML. However as I have said many times it is my feeling that CML will be cured in the near future. If so I would love to say, I told you so, and I will!. Then you made a comment that goes against my grain, and that was that you thought that you were going to die because of all the side effects. I hope that you remember me saying that CML poisons your body as well as your mind. Your mind is a very powerful tool to be able to help yourself. I would like for you and everyone to read this. EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE SUCCESSFUL OUTCOME... FOCUS... How do you think that I was able to have a bone marrow transplant and living in a small plastic bubble that was in the hospital for seven months? It is because I was able to use my mind to focus... Why do you think that I always end any of my posts with 18's? Well, it is because it means life, and that is positive thinking. 18's, Marty On Tue, May 5, 2015 at 11:35 AM, Suzieq sheila.a.wat...@gmail.com 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
