Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 My name is Kathy and I'm 47. I was given the dx of CML on May 22. I'm wondering if anyone else has a presentation of this disease similar to mine. I'm very anemic and dependent upon tranfusions every 3 weeks. My first was in mid-April. When I first went to the dr. in mid-april my red blood cell count was only 5. My doctor here in upstate NY thought at first that I had megakaryocytic (sp?) leukemia I guess because I had megakeryocytes in my bloodstream. Also, my white blood cells have never been high -- only about 11 or 12,000. But I had primitive white cells in my bloodstream. Two BMBs were both dry because of myelofibrosis. My doctor sent me to see a specialist at Mt. Sinai, NYC. He confirmed that I have the Philadelphia chromosome, decided I have an unusual case of CML and started me on gleevec, which has greatly reduced the primitive cells in my bloodstream. I'm doing OK now but had a bout of high fever, low blood pressure and rash which had me in the ICU a couple of weeks ago. At that time I was also diagnosed with mastocytosis-another rare disease, which I think must be related because it is also treated with Gleevec. Im scheduled to go back to Mt. Sinai at the end of August for another BMB. So, just wondering if this is really that unusual? Thanks for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hi Kathy, Welcome to the group although sorry you had to find us. I'm not sure if you made a mistake with your red count or not because a red count of 5 would be considered very normal, even high normal. Perhaps you were referring to your hemoglobin? Megakaryocytes are just a fancy way of saying giant platelets and having a high platelet count is very classic for CML. Do you know what your platelet count was? Some people don't have a very high white count but their platelet count could be in the millions. Did your BMB confirm the myelofibrosis or did they just assume because you had a dry tap that it must be due to myelofibrosis? There are some people who get dry taps but who don't have myelofibrosis so this is something you want to be sure of. In any case, it sounds like you have a bit of a complicated case and I would encourage you to see a CML expert. There are a couple of them at Slone Kettering. Best wishes, Tracey dx Jan 2002 > > My name is Kathy and I'm 47. I was given the dx of CML on May 22. > I'm wondering if anyone else has a presentation of this disease > similar to mine. > > I'm very anemic and dependent upon tranfusions every 3 weeks. My > first was in mid-April. When I first went to the dr. in mid-april my > red blood cell count was only 5. > > My doctor here in upstate NY thought at first that I had > megakaryocytic (sp?) leukemia I guess because I had megakeryocytes in > my bloodstream. Also, my white blood cells have never been high -- > only about 11 or 12,000. But I had primitive white cells in my > bloodstream. Two BMBs were both dry because of myelofibrosis. > > My doctor sent me to see a specialist at Mt. Sinai, NYC. He > confirmed that I have the Philadelphia chromosome, decided I have an > unusual case of CML and started me on gleevec, which has greatly > reduced the primitive cells in my bloodstream. I'm doing OK now but > had a bout of high fever, low blood pressure and rash which had me in > the ICU a couple of weeks ago. At that time I was also diagnosed with > mastocytosis-another rare disease, which I think must be related > because it is also treated with Gleevec. Im scheduled to go back to > Mt. Sinai at the end of August for another BMB. > > So, just wondering if this is really that unusual? > > Thanks for your help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Thanks for the response, Tracey. Yes, I meant hemoglobin, I thought they were the same thing. Don't know much about this hematological stuff yet! I don't even know what my platelet count is. It's been kind of a whirlwind. Guess I need to start writing things down. I'm pretty sure they confirmed the myelofibrosis. I forgot to mention they also said I'm in the accelerated phase. Take care, Kathy > > > > My name is Kathy and I'm 47. I was given the dx of CML on May 22. > > I'm wondering if anyone else has a presentation of this disease > > similar to mine. > > > > I'm very anemic and dependent upon tranfusions every 3 weeks. My > > first was in mid-April. When I first went to the dr. in mid-april > my > > red blood cell count was only 5. > > > > My doctor here in upstate NY thought at first that I had > > megakaryocytic (sp?) leukemia I guess because I had megakeryocytes > in > > my bloodstream. Also, my white blood cells have never been high - - > > only about 11 or 12,000. But I had primitive white cells in my > > bloodstream. Two BMBs were both dry because of myelofibrosis. > > > > My doctor sent me to see a specialist at Mt. Sinai, NYC. He > > confirmed that I have the Philadelphia chromosome, decided I have > an > > unusual case of CML and started me on gleevec, which has greatly > > reduced the primitive cells in my bloodstream. I'm doing OK now > but > > had a bout of high fever, low blood pressure and rash which had me > in > > the ICU a couple of weeks ago. At that time I was also diagnosed > with > > mastocytosis-another rare disease, which I think must be related > > because it is also treated with Gleevec. Im scheduled to go back > to > > Mt. Sinai at the end of August for another BMB. > > > > So, just wondering if this is really that unusual? > > > > Thanks for your help. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 wow my experience with gleevec was the total oposite, i was loosing hair like crazy for years before dx after a few weeks on gleevec, my hair stoped falling. aliza yaffa rochester n.y. **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hi Kathy, Your counts make more sense is you are in the accelerated phase. I second Tracey, you should consult with one of the cml leaders, as the treatment and choice of options are more complex in the accelerated phase. People on this list can give you a few names, some may be close to you. It's normal to be overwhelmed at diagnosis by the bad news and the overflow of medical information, we all have been there, do not hesitate to ask any questions here. Hang in there, Cheers, Marcos. On Fri, Jun 27, 2008 at 10:47 AM, kathykormos <kathykormos@...> wrote: > Thanks for the response, Tracey. > > Yes, I meant hemoglobin, I thought they were the same thing. Don't > know much about this hematological stuff yet! I don't even know what > my platelet count is. It's been kind of a whirlwind. Guess I need to > start writing things down. I'm pretty sure they confirmed the > myelofibrosis. I forgot to mention they also said I'm in the > accelerated phase. > > Take care, > Kathy > > >> > >> > My name is Kathy and I'm 47. I was given the dx of CML on May > 22. >> > I'm wondering if anyone else has a presentation of this disease >> > similar to mine. >> > >> > I'm very anemic and dependent upon tranfusions every 3 weeks. My >> > first was in mid-April. When I first went to the dr. in mid-april >> my >> > red blood cell count was only 5. >> > >> > My doctor here in upstate NY thought at first that I had >> > megakaryocytic (sp?) leukemia I guess because I had > megakeryocytes >> in >> > my bloodstream. Also, my white blood cells have never been high - > - >> > only about 11 or 12,000. But I had primitive white cells in my >> > bloodstream. Two BMBs were both dry because of myelofibrosis. >> > >> > My doctor sent me to see a specialist at Mt. Sinai, NYC. He >> > confirmed that I have the Philadelphia chromosome, decided I have >> an >> > unusual case of CML and started me on gleevec, which has greatly >> > reduced the primitive cells in my bloodstream. I'm doing OK now >> but >> > had a bout of high fever, low blood pressure and rash which had > me >> in >> > the ICU a couple of weeks ago. At that time I was also diagnosed >> with >> > mastocytosis-another rare disease, which I think must be related >> > because it is also treated with Gleevec. Im scheduled to go back >> to >> > Mt. Sinai at the end of August for another BMB. >> > >> > So, just wondering if this is really that unusual? >> > >> > Thanks for your help. >> > >> > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2008 Report Share Posted June 27, 2008 Hi Kathy, The first thing you want to do is get a copy of all your test results. This way you can study them and compare them from one test to the other. This way you'll get a good idea of how you're doing and you can bring them to another doctor if you decide to get a second opinon. It takes a while to understand the basics but you'll get there. Don't be afraid to ask questions. Someone here will likely be able to help. Did they tell you why they think you're in accelerated phase? I would assume that you must have had a higher blast count as that's the general criteria for determining which phase you're in. If you are in accelerated phase, you really need to see someone who's an expert as things can be a little trickier with advanced phases. Take care, Tracey > > > > > > My name is Kathy and I'm 47. I was given the dx of CML on May > 22. > > > I'm wondering if anyone else has a presentation of this disease > > > similar to mine. > > > > > > I'm very anemic and dependent upon tranfusions every 3 weeks. My > > > first was in mid-April. When I first went to the dr. in mid- april > > my > > > red blood cell count was only 5. > > > > > > My doctor here in upstate NY thought at first that I had > > > megakaryocytic (sp?) leukemia I guess because I had > megakeryocytes > > in > > > my bloodstream. Also, my white blood cells have never been high - > - > > > only about 11 or 12,000. But I had primitive white cells in my > > > bloodstream. Two BMBs were both dry because of myelofibrosis. > > > > > > My doctor sent me to see a specialist at Mt. Sinai, NYC. He > > > confirmed that I have the Philadelphia chromosome, decided I have > > an > > > unusual case of CML and started me on gleevec, which has greatly > > > reduced the primitive cells in my bloodstream. I'm doing OK now > > but > > > had a bout of high fever, low blood pressure and rash which had > me > > in > > > the ICU a couple of weeks ago. At that time I was also diagnosed > > with > > > mastocytosis-another rare disease, which I think must be related > > > because it is also treated with Gleevec. Im scheduled to go back > > to > > > Mt. Sinai at the end of August for another BMB. > > > > > > So, just wondering if this is really that unusual? > > > > > > Thanks for your help. > > > > > > Quote Link to comment Share on other sites More sharing options...
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