Guest guest Posted August 9, 2010 Report Share Posted August 9, 2010 Dear Friends: I wish you all doing well. This my first participation in this wonderful group.I am a patient of cml since about 7 years. i began treatment with hydroxyurea for about 4 years then glevec for another 2 years. Now my doctor said that i can`t take glevec as it may be not useful any more and i have to change to tasigna or sprycel ,both of them are not available in my country (Egypt).He said also that BMT may be recommended after one or two years of treatment with tasigna or sprycel.my question is do you have any experience that may help me in this critical situation. Best Regards, AHMED Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 > > Dear Friends: > I wish you all doing well. > This my first participation in this wonderful group.I am a patient of cml since about 7 years. i began treatment with hydroxyurea for about 4 years then glevec for another 2 years. Now my doctor said that i can`t take glevec as it may be not useful any more and i have to change to tasigna or sprycel ,both of them are not available in my country (Egypt).He said also that BMT may be recommended after one or two years of treatment with tasigna or sprycel.my question is do you have any experience that may help me in this critical situation. > Best Regards, > AHMED ______________________________ Hi Ahmed, You need to bring more information to the list for us to try to help you. 1. What does you doctor mean that Gleevec may not be useful any more? He can only say this if he has some tests that show this. What tests are you getting regularly........besides blood counts. Do you get FISH, bone marrow biopsy or PCR test? and what are the results. 2. Why would he recommend those other 2 drugs if they are not available in your country? is he from another country? 3. Most people with CML will NEVER have a BMT with the drugs available today.....unless they are toxic for you or not effective. This is the information that you need. It really does not sound like you are seeing a cml specialist? IF they drugs are working, you stay on the drugs....and never have a transplant. This doctor needs to give you much more information and explain why he is saying what he is saying.....or I would try to see another leukemia doctor. Are you still chronic stage cml? I hope you can get more information, but I do not think your doctor is telling you what other doctors would tell you. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2010 Report Share Posted August 13, 2010 Welcome to the group! I am on Tasigna, and Novartis mails it to me directly. Can you do that, Ahmed? Have Novartis mail it to your home, so that you don't need to go to a pharmacy in Egypt? Or is it not approved for use in Egypt? Kind regards, in San Francisco, California, U.S. On Mon, Aug 9, 2010 at 2:44 AM, eng.ahasan <no_reply > wrote: > > > Dear Friends: > I wish you all doing well. > This my first participation in this wonderful group.I am a patient of cml > since about 7 years. i began treatment with hydroxyurea for about 4 years > then glevec for another 2 years. Now my doctor said that i can`t take glevec > as it may be not useful any more and i have to change to tasigna or sprycel > ,both of them are not available in my country (Egypt).He said also that BMT > may be recommended after one or two years of treatment with tasigna or > sprycel.my question is do you have any experience that may help me in this > critical situation. > Best Regards, > AHMED > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2010 Report Share Posted August 20, 2010 Hi Group, This is a reply to Ahmed's post from last week. I have been out of town so it has taken me quit a while to get caught up on the group's postings. Anyhow as I mentioned about a month ago my daughter was getting ready to go through the BMT process. She is now 10 days post transplant and is doing as well as can be expected at this point. Her hair was starting to fall out because of the chemo, so as a show of support to her I had my head shaved today. She doesn't know that I did that and I won't see her until tomorrow, but I am sure it will be a funny surprise for her. Anyhow just before the BMT I asked the doc why the change of heart on doing a BMT. Her response was that it was looking that her CML was showing less and less of a response to Gleevic. She was briefly on Sprycel and was like a zombie. Tasigna was also tried but only for a short time because the decision was already made for the BMT. The docs won't know for about another 10 days on how the new marrow is doing, but so far everything is looking pretty good for my daughter and for me that is a great thing. > > > > Dear Friends: > > I wish you all doing well. > > This my first participation in this wonderful group.I am a patient of cml since about 7 years. i began treatment with hydroxyurea for about 4 years then glevec for another 2 years. Now my doctor said that i can`t take glevec as it may be not useful any more and i have to change to tasigna or sprycel ,both of them are not available in my country (Egypt).He said also that BMT may be recommended after one or two years of treatment with tasigna or sprycel.my question is do you have any experience that may help me in this critical situation. > > Best Regards, > > AHMED > ______________________________ > > Hi Ahmed, > You need to bring more information to the list for us to try to help you. > > 1. What does you doctor mean that Gleevec may not be useful any more? He can only say this if he has some tests that show this. What tests are you getting regularly........besides blood counts. > Do you get FISH, bone marrow biopsy or PCR test? and what are the results. > > 2. Why would he recommend those other 2 drugs if they are not available in your country? is he from another country? > > 3. Most people with CML will NEVER have a BMT with the drugs available today.....unless they are toxic for you or not effective. This is the information that you need. It really does not sound like you are seeing a cml specialist? IF they drugs are working, you stay on the drugs....and never have a transplant. > > This doctor needs to give you much more information and explain why he is saying what he is saying.....or I would try to see another leukemia doctor. > > Are you still chronic stage cml? > I hope you can get more information, but I do not think your doctor is telling you what other doctors would tell you. > > C. > Quote Link to comment Share on other sites More sharing options...
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