Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 I read the article too, and as someone newly diagnosed these are the things I hope for...you all have been so supportive to me in just the short time I have been on this site...that support has given me the strength to seek out a specialist in the hopes I can be one that can benefit from the drugs...my family however I feel is thinking that this is not a good idea...they haven't come out and said it, but my sister is adament that she's hoping to be a donor for me...I have told her that I'm not sure I want to proceed that way and she accused me of not wanting to do everything I could to beat this disease...I spoke to my husband and asked him if he thought it was foolish of me to get my hopes up that I will get more time than the local onc. has already told me..and told me no that it's good to always have hope, but he thinks that my sister is feeling that I shouldn't get my hopes up because after all it is cancer and that the local dr. wouldn't have told us such a dire statement without checking into the diagnosis further...now I am second guessing myself and that's not good either - I'm trying so hard to stay positive because they tell me that's the only way to get through this, but it's hard when those closest to you are not believing it... Cheryl > > Carl, please do not take our hope away from us. I looked at the article and it looked legitimate, coming from s Hopkins and it seemed to come from their research department. Most of us have survived living off hope and I believe that it will happen, sooner than many of us know. I think you had a negative experience with the first CML vaccine, but I don't remember any list member throwing cold water on the project by telling you that it might not work, not to set your hopes on it. > > During WW II, Kate cut a record about the White Cliffs of Dover. That was written to bring morale and hope to the pilots who barely made it back to England after a bombing raid over Germany. Their radios were tuned in to hear her sing that song and it became symbolic of success against all odds. When they saw those White Cliffs of Dover, they knew they had made it back on a wing and a prayer. Whenever I see the White Cliffs of Dover, I say a prayer for all the men who didn't make it back and those who went there with a positive attitude about coming back home alive. > > God bless every one of those researchers who work tirelessly to find a cure for CML. > Thank you God for us having the most treatable of all the leukemias. We have almost as many treatments and trials as Baskins Robbins has ice cream flavors. > > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2010 Report Share Posted January 13, 2010 Hi Cheryl, I'm sorry that your sister feels that way. I'm sure that she wants the best for you but she needs to do her homework. Since the invention of the new drugs, BMTs are rarely done for CML. If the CML experts are saying not to go that route, what information does your sister have to contradict them. The reason is simple. The mortality rates for BMTs are off the Richter Scale when compared to the mortality rates for Gleevec and all the new drugs. And even if you do suvive the transplant, chronic GVHD can be much worse than one can imagine. Your local doctor is not a CML specialist. Wait until you get a better picture from a CML specialist and give that information to your sister. For the majority of CML patients we can look forward to at least 20-30 full years with the current arsenal of drugs. This will give the scientists plenty of time to come up with a cure for CML. There is no urgency to cure CML other that the glory it would bring to the discoverer. Remind me to have this discussion a year from now to see where we are at. Zavie Zavie (age 71) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 4.0 log reduction Dec/09 e-mail: zmiller@... Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 ID: zaviem Tel in FL: 561-429-5507 _____ From: [mailto: ] On Behalf Of thornton_cheryl Sent: January-12-10 8:36 PM Subject: [ ] Re: Vaccine I read the article too, and as someone newly diagnosed these are the things I hope for...you all have been so supportive to me in just the short time I have been on this site...that support has given me the strength to seek out a specialist in the hopes I can be one that can benefit from the drugs...my family however I feel is thinking that this is not a good idea...they haven't come out and said it, but my sister is adament that she's hoping to be a donor for me...I have told her that I'm not sure I want to proceed that way and she accused me of not wanting to do everything I could to beat this disease...I spoke to my husband and asked him if he thought it was foolish of me to get my hopes up that I will get more time than the local onc. has already told me..and told me no that it's good to always have hope, but he thinks that my sister is feeling that I shouldn't get my hopes up because after all it is cancer and that the local dr. wouldn't have told us such a dire statement without checking into the diagnosis further...now I am second guessing myself and that's not good either - I'm trying so hard to stay positive because they tell me that's the only way to get through this, but it's hard when those closest to you are not believing it... Cheryl > > Carl, please do not take our hope away from us. I looked at the article and it looked legitimate, coming from s Hopkins and it seemed to come from their research department. Most of us have survived living off hope and I believe that it will happen, sooner than many of us know. I think you had a negative experience with the first CML vaccine, but I don't remember any list member throwing cold water on the project by telling you that it might not work, not to set your hopes on it. > > During WW II, Kate cut a record about the White Cliffs of Dover. That was written to bring morale and hope to the pilots who barely made it back to England after a bombing raid over Germany. Their radios were tuned in to hear her sing that song and it became symbolic of success against all odds. When they saw those White Cliffs of Dover, they knew they had made it back on a wing and a prayer. Whenever I see the White Cliffs of Dover, I say a prayer for all the men who didn't make it back and those who went there with a positive attitude about coming back home alive. > > God bless every one of those researchers who work tirelessly to find a cure for CML. > Thank you God for us having the most treatable of all the leukemias. We have almost as many treatments and trials as Baskins Robbins has ice cream flavors. > > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2010 Report Share Posted January 16, 2010 Lottie and others who chimed in - Thanks for your responses, and continuing to support providing hope and support to each other. My diagnosis has created many issues and problems in addition to the health side. All of this, on top of the Gleevec side effects, has diminished the quality of my life in ways I never, ever would have expected. Despite all that, I do my best to try to remain upbeat and strong. LLS has been very supportive in helping me connect with local foundations, legal resources and other services. Remaining active, strong and advocating for ourselves is really important to our well being. Thanks for being there. Pat Elliott Phoenix, AZ PS My local LLS group is helping a family whose four year old has just been diagnosed with CML. > > Carl, please do not take our hope away from us. I looked at the article and it looked legitimate, coming from s Hopkins and it seemed to come from their research department. Most of us have survived living off hope and I believe that it will happen, sooner than many of us know. I think you had a negative experience with the first CML vaccine, but I don't remember any list member throwing cold water on the project by telling you that it might not work, not to set your hopes on it. > > During WW II, Kate cut a record about the White Cliffs of Dover. That was written to bring morale and hope to the pilots who barely made it back to England after a bombing raid over Germany. Their radios were tuned in to hear her sing that song and it became symbolic of success against all odds. When they saw those White Cliffs of Dover, they knew they had made it back on a wing and a prayer. Whenever I see the White Cliffs of Dover, I say a prayer for all the men who didn't make it back and those who went there with a positive attitude about coming back home alive. > > God bless every one of those researchers who work tirelessly to find a cure for CML. > Thank you God for us having the most treatable of all the leukemias. We have almost as many treatments and trials as Baskins Robbins has ice cream flavors. > > Hands & hearts, > Lottie Duthu > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2010 Report Share Posted January 17, 2010 I see Dr. Druker every August. While I was there this past August I asked him about the vaccine. He said they had tried it and they were not getting the results they hoped for so it was discontinued - But - they are still working on the vaccine approach. So there is still (and always) hope! Carol > > > > Carl, please do not take our hope away from us. I looked at the article and it looked legitimate, coming from s Hopkins and it seemed to come from their research department. Most of us have survived living off hope and I believe that it will happen, sooner than many of us know. I think you had a negative experience with the first CML vaccine, but I don't remember any list member throwing cold water on the project by telling you that it might not work, not to set your hopes on it. > > > > During WW II, Kate cut a record about the White Cliffs of Dover. That was written to bring morale and hope to the pilots who barely made it back to England after a bombing raid over Germany. Their radios were tuned in to hear her sing that song and it became symbolic of success against all odds. When they saw those White Cliffs of Dover, they knew they had made it back on a wing and a prayer. Whenever I see the White Cliffs of Dover, I say a prayer for all the men who didn't make it back and those who went there with a positive attitude about coming back home alive. > > > > God bless every one of those researchers who work tirelessly to find a cure for CML. > > Thank you God for us having the most treatable of all the leukemias. We have almost as many treatments and trials as Baskins Robbins has ice cream flavors. > > > > Hands & hearts, > > Lottie Duthu > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2010 Report Share Posted January 18, 2010 > > I see Dr. Druker every August. While I was there this past August I asked him about the vaccine. He said they had tried it and they were not getting the results they hoped for so it was discontinued - But - they are still working on the vaccine approach. So there is still (and always) hope! > > Carol _______________________ Hi Carol, There have already been several vaccines tried, so the recent post was about a newer one. I did the vaccine trial that Dr. Druker ran, it was also done at the Uni of Connecticutt. They took your own white cells and tried to create a vaccine out of it.....and I think you had shots for 8 weeks. It was not effective at all, but maybe another one will be? C. Quote Link to comment Share on other sites More sharing options...
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