Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Hi : This is all pretty new to you, just being diagnosed in Sept. of this year. You are doing very well on the Gleevec, and your off to a good start. A lot of us old-timers who have been battling CML since the 90's, and only had the old traditional treatment until they found out how to treat CML, and what causes it. They know more now to be able to work on that cure. When I was diagnosed in 1998, I was scared to death that I would not make it. I just proceeded with what was available to me until I got into the clinical trial for the Gleevec. Its 11 years for me in Dec., so I just keep the faith that with the knowledge and expertise of all these researchers that eventually CML will be wiped out. You do have a bright future. > > Hi All, > > I am based in the UK and recently attended a CML conference day for patients and carers. > > The Dr's that were speaking eluded to the fact that CML is now a flooded market for treatment and that with the 1st and 2nd generation drugs available there probably wouldn't be a 3rd anytime soon (because of the small market possibly requiring a 3rd generation). > > For example, a recent trial showing that a drug that worked well on the T3151 mutation has been shelved by the drug company due to the small market vs. the investment required to convert it from a treatment requiring a 24hr drip to a tablet. > > I was just wondering what the views were of people 'across the pond' and beyond? > > In addition to this, does the above show that the possibility of 'a safe cure' is no longer on anybody's radar? > > I was diagnosed on 9/9/09 and have reduced from 100% to 32% BCR-ABL in 5 weeks. Please do not think that I am ungrateful for Gleevic, I really am, it was just a question I wanted to hear alternative views about. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 Hi , Welcome to the group. I assume you're referring to the drug Ceflatonin (which is also known as Homoharringtonine) in your post? If so can you clarify where you read that it was shelved? I ask because in a recent report dated November 2, 2009, they elude to the fact that they are trying to seek accelerated approval for the drug based on its efficacy and small unmet market. http://tinyurl.com/ylhx77n In any case, you will be happy to know that there still are doctors out there who are committed to finding the cure for CML. Dr. Druker and Dr. Holyoake are just two. Here's a great article about Dr. Holyoake: http://tinyurl.com/kusglq Take care, Tracey dx Jan 2002 > > Hi All, > > I am based in the UK and recently attended a CML conference day for patients and carers. > > The Dr's that were speaking eluded to the fact that CML is now a flooded market for treatment and that with the 1st and 2nd generation drugs available there probably wouldn't be a 3rd anytime soon (because of the small market possibly requiring a 3rd generation). > > For example, a recent trial showing that a drug that worked well on the T3151 mutation has been shelved by the drug company due to the small market vs. the investment required to convert it from a treatment requiring a 24hr drip to a tablet. > > I was just wondering what the views were of people 'across the pond' and beyond? > > In addition to this, does the above show that the possibility of 'a safe cure' is no longer on anybody's radar? > > I was diagnosed on 9/9/09 and have reduced from 100% to 32% BCR-ABL in 5 weeks. Please do not think that I am ungrateful for Gleevic, I really am, it was just a question I wanted to hear alternative views about. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Hi , I was dx in May of 95, and after going through some of the treatment back then, ugh, I am happy taking pills today instead of shots. I know a cure would be great, but life can still be beautiful just taking pills, once you adjust to side effects. Women are still having babies , whether they have cml or their husbands, it's possible today, where it wasn't " back then. "  We can all look forward to a very productive life with the pills that are out there now, and be ever so thankful we do not still have to take Interferon, knowing CML is not a death sentence. So, for me, personally, although a cure would be great, I look at it like taking high blood pressure meds, or high cholesterol meds, it's just a part of every day life. (of course, it helps to feel this way, if, like me, you are on a pill that has NO side effects. I am sure if I was suffering every day from them, I would have a different attitude?) Good luck with your treatment, Bobby a ( Bobby ) Doyle, dob 12/17/29 Brecksville, Ohio, USA DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years o2/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.017 #840 Zavie's Zero Club From: <pesty@...> Subject: [ ] The Future... Date: Monday, November 16, 2009, 1:13 PM  Hi All, I am based in the UK and recently attended a CML conference day for patients and carers. The Dr's that were speaking eluded to the fact that CML is now a flooded market for treatment and that with the 1st and 2nd generation drugs available there probably wouldn't be a 3rd anytime soon (because of the small market possibly requiring a 3rd generation). For example, a recent trial showing that a drug that worked well on the T3151 mutation has been shelved by the drug company due to the small market vs. the investment required to convert it from a treatment requiring a 24hr drip to a tablet. I was just wondering what the views were of people 'across the pond' and beyond? In addition to this, does the above show that the possibility of 'a safe cure' is no longer on anybody's radar? I was diagnosed on 9/9/09 and have reduced from 100% to 32% BCR-ABL in 5 weeks. Please do not think that I am ungrateful for Gleevic, I really am, it was just a question I wanted to hear alternative views about. Thanks Quote Link to comment Share on other sites More sharing options...
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