Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Hi. This is a diagnosis I've never heard. I just want to say that, over the four years I've been bouncing around these lists I've discovered that there were many other people who were diagnosed after excruciating bone pain -- mine in my right knee which was swollen twice its size overnight and made walking impossible. I'm not necessarily trying to link this symptom that led to my diagnosis with your tumor but it is something to think about. Maybe we could have a poll to see how many people were diagnosed after joint or bone pain and see if any of them had tumors. Or if they would just write in -- even those who don't normally post could do it anonymously. Please keep us informed. I don't have anything to say about the SCT recommendation except to be sure and get more than one opinion about that from a CML expert -- like someone at a major cancer center who specializes in CML -- MD , Dana Farber, Memorial Sloan Kettering or OHSU where Druker is. Also, why don't you post your question on the other CML websites if you haven't already. Best wishes, L [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Hi , Here's a place to start. Druker's email address, unless it's changed recently, is drukerbohsu.edu. The phone number I have is 503-494-5596. [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 before de biopsy, did they see it with an X Ray?? [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 At 11:37 AM 8/14/05 -0400, you wrote: >Hi , > >Here's a place to start. Druker's email address, unless it's >changed recently, is drukerbohsu.edu. small correction....... drukerb@... Dr.Druker is always willing to answer questions for people....you don't have to be his patient, so it is worth a note to him. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Thanks, . Re: [ ] granulocytic sarcoma At 11:37 AM 8/14/05 -0400, you wrote: >Hi , > >Here's a place to start. Druker's email address, unless it's >changed recently, is drukerbohsu.edu. small correction....... drukerb@... Dr.Druker is always willing to answer questions for people....you don't have to be his patient, so it is worth a note to him. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 before de biopsy, did they see it with an X Ray?? [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 I am sorry to hear about this diagnosis but confused also because I know there has been so much talk about Gleevec and sarcoma? I understand the trials have been on the type of Sarcoma that most HIV patients get but from my previous research the study was going very well and I only wonder why it wouldn't work for granulocytic sarcoma. And my reason for seeing my Physician over 5 years ago was bone and joint pain which ultimately led to my diagnosis of CML. [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 hi , your post caught my eye, because I have been having quite a bit of leg pain. Mine is in my right thigh, deep. Could you describe what your situation was, again? also what is an SCT? and is 'granulocytic sarcoma' a type of tumor from cml? sorry about the questions and that I don't have any info for you. chris in minn [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 my mum had a fracture in her ribs because of an accident, it was 5 months ago but she still has pain in her ribs while slepping, and reading about this sarcoma, now I'm worry about that pain what do you think?? [ ] granulocytic sarcoma if any of you remember my leg pain complaints, well they were recently diagnosed after a surgical biopsy as a " Granulocytic Sarcoma " which is made up of normal CML type cancer cells. I have begun radiation treatments to get rid of the tumor and my hemotologist is now suggesting that I consider a SCT as a more aggressive treatment for the CML. I am arguing that this may not be required as I have had an Extremely good response with Gleevec and I feel that as the leg pain was present before being diagnosed with CML that the Tumor was probably underway before Gleevec treatment was started. If anyone has any experience with this please let me know, I have not seen any other references to this on any boards. This is not great news but much better than it being a sarcoma of a differnent kind of cancer so I will continue to be the optimist. :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Thanks for the interest and best wishes from everyone, I'll try to answer some of the questions. I'm almost positive that it is the original source of pain dating back 8 months, I had several x-rays, bone scan, MRI, etc. Then it flared and popped out. My hemo for the time being has increased my Gleevec to 600mg. All of you that are having some pain should not be too alarmed, I have been told this is extremely rare, however if you are experiencing extreme pain I would insist on some diagnostic tests to rule it out. Anywa off to the cottage for the rest of the day:-) Quote Link to comment Share on other sites More sharing options...
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