Guest guest Posted May 14, 2006 Report Share Posted May 14, 2006 Hi , I didn't intend to leave you out of my response this morning but my mind was on telling the list that I thought we should take our opportunities as they come to voice our interest and concern for an actual cure and perhaps get more information about the direction that's taking. Your post to Cheryl-Anne was so good. Even though your attitude is so positive and you're able to keep the stress level way down, I do hope to hear that you've had a change in your 6-month test. Also glad you have such strong support in every way from Dr. D. Even though I see him every two months for tests and a review of my results, I don't actually know what Dr. Goldman is researching at NIH except that it's CML. He only sees a couple of patients one day a week, too. Obviously, since Cheryl Anne was able to book him, he is also making presentations to groups here and there which I'm happy about because he's so good at explaining the disease and also because he stays abreast of drugs, vaccines in the pipeline. The weather has been very changeable here this spring. Today we had a cold rain. But other days we have sun and it's in the 70s. I prefer the latter, of course. Have a good time planning and planting your garden. I have to satisfy myself with big pots of plants on my second floor balcony but even that is fun and it looks so pretty when they're all blooming in the summer. Look forward to more and better news soon. 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 15, 2006 Report Share Posted May 15, 2006 At 05:55 PM 5/14/06 -0400, you wrote: >I didn't intend to leave you out of my response this morning but my mind >was on telling the list that I thought we should take our opportunities as >they come to voice our interest and concern for an actual cure and perhaps >get more information about the direction that's taking....... > >Even though I see him every two months for tests and a review of my >results, I don't actually know what Dr. Goldman is researching at NIH >except that it's CML. He only sees a couple of patients one day a week, too. Hi , I don't think you can have a better cml specialist than a researcher! We are both very lucky. I was thinking after I posted.....that maybe from the drug companies point of view, they are not that interested in a cure!! We are a source of a lot of income. But now that we are mainly getting 2nd generation drugs that basically treat cml the same way.....the drug companies might not push so hard for new drugs (the pie is getting smaller with more choices soon). But the real researchers are not giving up on this goal of a cure.....and they often do it with research funds (NIH, L & L Society, etc) vs drug companies backing their research. Dr. D did about 10 years of basic research before he got to the point where he asked Novartis (actually Ciba-Geigy then) for some tyrosine kinase inhibitors to test. So those working on the basic science of CML and how it responds to the different molecules (drugs) are definitely looking out for us! Hey.....if you like to cook at all......you might consider taking cookies for Dr. Goldman's lab.....it is probably composed of PhD students, post-docs, etc......not well paid, just dedicated to their research. C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi , Thanks for your post, we are very fortunate that Dr. D. is working so hard to find the cure. As you know I am so excited about the vaccines and other work in immunotherapy. I really like the idea of the body learning how to heal itself. Kind of like the parable, teach a person to fish and you feed them for life... I certainly agree that mental attitude is so important, and expressing our concerns and worries in forums like these is so beneficial at times. And of course, I have just finished an intense one on one Yoga workout (1 hour) followed by a 1/2 hour back massage, which certainly helps take the " kinks " out and re-charge the batteries. Exercise has really helped me through this journey and I am grateful that I have stayed healthy enough to keep it up. I like the idea that Dr. D. tells you that he will do/share some of the worrying for you. My Dr. here in Montreal reminds me of that from time to time - I am supposed to remember to let him do some things for me, instead of me trying to do everything myself. (i.e. when something goes wrong in the system, I need to remember that he will get it addressed and fix - he usually does too). Hope you enjoyed working in your yard! All good things! Cheryl-Anne > > 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! " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2006 Report Share Posted May 15, 2006 Hi , Just to let you know, Dr. Goldman will be here doing a speaker tour with most of the hem/oncs here in Montreal. This is why we had an opportunity to have him speak to our group. He is quite excited to meet us all as he is fascinated with patient groups. I am finding that most hem/oncs out there (those in the know anyway) are checking out the various lists and are impressed with the level of knowledge we have. My understanding is that Dr. Goldman is interested in immunotherapy and I am looking forward to talking to him a bit about that when he is here in a couple of weeks. I have recently started back into gardening and I am enjoying it when I can get to it. Good luck with your plants and let us know how it goes. Cheers, Cheryl-Anne > > Even though I see him every two months for tests and a review of my results, I don't actually know what Dr. Goldman is researching at NIH except that it's CML. He only sees a couple of patients one day a week, too. Obviously, since Cheryl Anne was able to book him, he is also making presentations to groups here and there which I'm happy about because he's so good at explaining the disease and also because he stays abreast of drugs, vaccines in the pipeline. > > The weather has been very changeable here this spring. Today we had a cold rain. But other days we have sun and it's in the 70s. I prefer the latter, of course. Have a good time planning and planting your garden. I have to satisfy myself with big pots of plants on my second floor balcony but even that is fun and it looks so pretty when they're all blooming in the summer. > > Look forward to more and better news soon. > > Re: [ ] Digest Number 396 - Cheryl Anne > > > Hi Cheryl-Anne, > > Thanks for writing back. I know that everyone must feel this way when all the little tasks we have to do to keep healthy keeps CML on the front burner of our minds. I, too, think that when we have opportunities to talk with a doc or at a forum, etc., that questions about a cure should be explored. Unfortunately, though I have an excellent doc at this trial, his final question before I was given my first dose, was whether or not I would be open to a BMT. I'm 60 years old and even with all the improvements in the morbidity rate of BMTs, I would never consider it although I didn't tell him that. We were standing in the BMT area of the hospital at the time so I was politic rather than honest. Quote Link to comment Share on other sites More sharing options...
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