Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 Hi , I too am happy to hear that Dasatinib is working for you. It does feel good to vent every once in a while. The fact of the matter is that although many of us are trying very hard to get on with our lives, in spite of a dreary diagnosis of CML, it never really is too far from our minds. When we take drugs, order them, and follow up on either picking them up or having them delivered, we think about this disease. Even when we are stable we need to plan for our next appointment and make the necessary changes to our schedules. For those of us with side effects we need to manage them, with is another set of issues. Yeah, we could be in a lot worse shape, and I do feel thankful that we have so many options. But, I also admit to feeling, at times, like I am walking around with a stick of dynamite. I would desperately love for someone else to carry this stick for a while. So, I am hopeful and optimistic about a cure. I think it is up to us to keep the " pressure " on the effort to find a cure. We cannot afford for anyone involved in researching this disease to become complacent or think that " treatment " is " good enough " . , I am hopeful that your situation changes for the better in the not too distant future. It took quite a while to see an improvement - my fingers are crossed. I think Dr. D. was suggesting that the committee will approve Dasatinib at the ASCO meeting in early June in Atlanta. I will be at the meeting, and I will communicate to you all as soon as I hear anything. I have heard that if all goes well it could be on the market before the end of June. Thanks for all that you do for us and keep feeding Dr. D those cookies that you bake. Every little bit helps! Cheers, Peace and all good things, Cheryl-Anne (working this weekend at Niagara on the lake for my " other - non CML life " > Message 3 > From: " Loewenkamp " loewen1@... > Date: Fri May 12, 2006 4:50pm(PDT) > Subject: Re: [ -, Tracey, Cheryl and Others Interested > > Hi and All Others reading this, > > As long as we are lreatively well, it's easy to forget that > we even have CML and the word CURE sits on a backburner while > we go blithely along feeling somewhat comfortable knowing > that there are various treatment possibilities at this point. > > I recently began the dasatinib trial part 3 and am having a > different experience. I am feeling well and the side effects > are minor compared to Imatinib. However, I have to drive to > Baltimore from Washington every two weeks and sit for at > least four hours while I go through a series of tests. This > is nothig compared to what some people are going through but > it does force me to think about CML more than I'd like and > spend a lot more of time on healthcare than I'd like. > > Having been an adoptee I know what it's like to keep > complaints to yourself because, after all, you have it better > than a lot of people. I will say that a friend who's been > through many different treatments for CML for many years is > finally responding to dasatinib and feels great. He says > from what he knows of other treatments in preparation that > the word CURE will be a reality in not too long a time. He's > not a doc but knows a lot so maybe there are treatments that > will push CML over the edge into oblivion. > > Message 4 > From: " Cogan " ncogan@... > Date: Fri May 12, 2006 7:27pm(PDT) > Subject: Re: [ -, Tracey, Cheryl and Others Interested > > > Hi , et al........ > > I just had my 6 month follow-up with Dr. Druker for BMS. I am > glad to hear > that you are feeling good on this drug. I am not so > totally sure about > your friend's optimism....yes, there is a lot of research > going on......and they are definitely aiming for a cure, but > I am not sure that all the basics about CML are understood > yet, and that is what usually leads to a cure. > > At 3 months I was still stuck at my 'forever' 30% (or there > abouts) much to our disappointment. But we had an interesting > little discussion about that. > Obviously I don't have a mutation that is the source of the > resistance.....or you would expect to kill off all the > non-resistant cells and then the % of ph+ (resistant) cells > would increase over time....which has not happened. I have > been at 30-35% for 3+ years. > > Dr. D 'thinks' that the resistance that my 35% stubborn cells > have, and the unknown mechanism for it......could very likely > be the resistance that those who stay at 100% ph+ despite all > treatment to date (and who's disease is stable and does not > progress).....and is also the same resistance that does not > allow someone else to get to PCRU (even with a low PCR). They > do not understand why some cells are resistant to the drugs > yet (except for the point mutations). > > This is one of the biggest issues he is working on in the > lab......so he is glad to have my extra sample of aspiration > to work with....and I am glad to let him have it. Remember > that a real cure will mean that it works for everyone.............. > and that the treatment gets rid of the last CML cell. Right > now we know that even those who are testing PCRU still have > CML cells......and that without the drug, they will relapse > and the CML cells will increase. We are lucky to have > intelligent and highly motivated researchers working of all > the issues of CML treatment..........but I am not sure that a > cure is in sight yet??? > > Dr. D did say that he expects BMS to be approved at that next > meeting (not sure what this group is called???) in > June.......and also that they will be getting the latest data > about the different treatment options with BMS....once a day > vs twice a day....what dose, etc. So all this is not too far away. > > My appointment was my 6 months BMS tests........will let you > all know if some of the stubborn CML cells fall when I get results. > > C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 At 06:21 PM 5/13/06 -0400, you wrote: >I think it is up to us to keep the " pressure " on the effort to find a cure. >We cannot afford for anyone involved in researching this disease to become >complacent or think that " treatment " is " good enough " . > > >, I am hopeful that your situation changes for the better in the not >too distant future. It took quite a while to see an improvement - >my fingers are crossed. Hi Cheryl-Anne, I don't think we have to worry at all about the researchers not going for a cure with this disease. It is really the most simple cancer....with 95% of us having the same chromosomal abnormality in chronic phase....much easier than trying to find a cure for CML than for something like breast cancer. Dr. D has routinely mentioned to me that he is working on how to " kill off the last cml cell " .....as are all those doing vaccine trials. He really has a very large research lab......remember he only sees patients one day a week, he is primarily a researcher, unlike many of the other CML specialists. They have many motivations, including the patients they care about.......but can you imagine the prestige that will go with actually curing a cancer!! that is going for the 'gold ring! " I am not really too stressed by not having improvement at 3 months (and soon to know about 6 months). It was a disappointment at 3 months......because we were both thinking that a stronger drug would do the trick. But stable is good! When I said to Dr. D that I was just not going to worry about it because there was nothing I could do about it (the drug is either going to work better for me or not).......he said he would worry about it.......which was kind of sweet. It's his job to figure out why these drugs are not working for everyone.....and what this primary resistance is that EVERYONE has to some degree (remember even when you are PCRU you still have CML cells). He told me before that he has 15-20 more years to give to figuring this all out! He is motivated for the long haul....and not satisfied with just treatment drugs. And I think he has many colleagues in this RACE to a cure. In my own situation I also have several very dedicated alternative medical folks working on my health....and I feel like I am getting healthier all the time. I did love a comment that Jerry made recently on his site........he said that NOW that he finally has a good response with BMS (the first drug that has worked well for him).....he can take off his " No Long Range Plans " t-shirt and even go buy a pair of new shoes! As you know Cheryl-Anne........mental attitude plays a big role in how you deal with a chronic illness (and what a great thing that we can now speak of CML as a chronic illness vs. an almost always fatal disease....pre-Gleevec era). Best to all......... Happy Mother's Day to all the mothers, It is a beautiful sunny day here and I will be working in my yard soon. Maui Nanc Oh.....one other funny thing that Dr. D said at my appt....... " maybe you are just going to be a BMS turtle! " .............I did not know that he even knew what a 'turtle' was........ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 HI ----Glad to see that you are still posting regularly and trying BMS. There will be a cure someday, I am sure of it. And I agree with you on the day. It is sunny and WARM and beautiful and I would be out in the yard, but I am working on a 3D design assignment that I will be bringing to Eugene on Tuesday! I am not a 3D person!!!!!! Rosemary RE: [ ] Digest Number 396 - & At 06:21 PM 5/13/06 -0400, you wrote: >I think it is up to us to keep the " pressure " on the effort to find a cure. >We cannot afford for anyone involved in researching this disease to become >complacent or think that " treatment " is " good enough " . > > >, I am hopeful that your situation changes for the better in the not >too distant future. It took quite a while to see an improvement - >my fingers are crossed. Hi Cheryl-Anne, I don't think we have to worry at all about the researchers not going for a cure with this disease. It is really the most simple cancer....with 95% of us having the same chromosomal abnormality in chronic phase....much easier than trying to find a cure for CML than for something like breast cancer. Dr. D has routinely mentioned to me that he is working on how to " kill off the last cml cell " .....as are all those doing vaccine trials. He really has a very large research lab......remember he only sees patients one day a week, he is primarily a researcher, unlike many of the other CML specialists. They have many motivations, including the patients they care about.......but can you imagine the prestige that will go with actually curing a cancer!! that is going for the 'gold ring! " I am not really too stressed by not having improvement at 3 months (and soon to know about 6 months). It was a disappointment at 3 months......because we were both thinking that a stronger drug would do the trick. But stable is good! When I said to Dr. D that I was just not going to worry about it because there was nothing I could do about it (the drug is either going to work better for me or not).......he said he would worry about it.......which was kind of sweet. It's his job to figure out why these drugs are not working for everyone.....and what this primary resistance is that EVERYONE has to some degree (remember even when you are PCRU you still have CML cells). He told me before that he has 15-20 more years to give to figuring this all out! He is motivated for the long haul....and not satisfied with just treatment drugs. And I think he has many colleagues in this RACE to a cure. In my own situation I also have several very dedicated alternative medical folks working on my health....and I feel like I am getting healthier all the time. I did love a comment that Jerry made recently on his site........he said that NOW that he finally has a good response with BMS (the first drug that has worked well for him).....he can take off his " No Long Range Plans " t-shirt and even go buy a pair of new shoes! As you know Cheryl-Anne........mental attitude plays a big role in how you deal with a chronic illness (and what a great thing that we can now speak of CML as a chronic illness vs. an almost always fatal disease....pre-Gleevec era). Best to all......... Happy Mother's Day to all the mothers, It is a beautiful sunny day here and I will be working in my yard soon. Maui Nanc Oh.....one other funny thing that Dr. D said at my appt....... " maybe you are just going to be a BMS turtle! " .............I did not know that he even knew what a 'turtle' was........ Quote Link to comment Share on other sites More sharing options...
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