Re: [CMLHope] My story, Part I
Hi Maria, I take my dose once daily in the morning with breakfast. I am considering asking my onc if I can go off of it soon to see how my body will react. My platelets and wbc go up when I try to reduce it, but I am going to try once more. I had the same symptoms as you when I was first dx in 2004. I was so tired I couldn't take my daily walks. My platelets were in the millions and wbc way too high. I was put in the hospital right away, and they started doing the blood cleanse. I was put on 400 mgs Gleevec along with Hydrea and some other drug. I was very sick but manage to make it through. I never reached remission on Gleevec or Tasi. I went into Blast in 2009 when Tasigna quit working for me and my potassium went up too high. I was once again hospitalized with the blood cleanses again for about 10 days; no fun at all, but again I came through it all and was put on Sprycel. Sprycel worked for me and I was soon in remission. They quit the BMA when I went into remission and they take a PCR blood test every three months. Just keep fighting and you will make it through. Blessings Jeanie3 In a message dated 7/16/2014 11:01:15 P.M. Eastern Daylight Time, mariacash...@gmail.com writes: Dear Joyce: Consolidadtions are other chemotherapy treatments. I had 3 after the induction for a total of 4. For all 4 I had to stay put in the hospital for a month. As I mentioned, they first treated my CML as if it was AML. It was really ruff. The othet thing is that I am at a University Hospital (which in a way wxplains why so many doctors). Here in Puerto Rico this is the only hospital that really treats leaukemia patients...they are a specialized unit. but sometimes I feel like running away The problem that I have is that my doctors keep making reference to my blast crisis and still handle my case as if I was in the middle of one!!! ONly one of them, who graduated last year told me that I no ,longer have a problem with the blast crisis, that they took me out of it and that it is gone!!! Everybody else still clasiffies me as CML/AML which is really not the case. Now, about Sprycel. is your husband on a once a day or twice a day dose? I hate bone marrow aspirations :( Maria :) On Wed, Jul 16, 2014 at 10:47 PM, Joyce Mesnarich _joyway@htc.net_ (mailto:joy...@htc.net) wrote: Maria, You are truly a miracle! So happy you had success with Sprycel. But these meds are very powerful and do cause serious side effects. It is a shame that our doctors do not always listen to our concerns. The fact that you had to see different doctors during this critical time is unfortunatebut you made it through. I am going to ask a question which may seem stupid, but I don't know what you mean by the term consolidations. Can you explain that? You are questioning the advisability of continuing Sprycel at 70 mg. I would think that as long as you have periodic bone marrow aspirations to be sure you are not back-sliding, and Sprycel at that dose is not negatively affecting you, I would be inclined to stay with it until and if your bad side effects return. My husband was allergic to Gleevec and put on Sprycel at 50 mg. In 4 months he was PCRU (undetectable). He has had some issure, but nothing so far that is serious. I think all of those on these TKIs are a little on edge wondering what the long term effect of them might be since they have only been in use since 2000. I hope you continue to do well. God bless and keep you. Joyce in IL On Jul 16, 2014, at 7:38 PM, Maria Cashion wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that
Re: [CMLHope] My story, Part I
Maria, as far as your doctors grey matter well it is you that should be controling that. Think about something, without you and others in the same position as you they wouldn't be in practice. I found out something a long time ago. You have to be sick in order to find the right doctors that will really care for you. If they don't or can't then it is very simple, get one that does. It may be frustrating but it has always worked for me. I would like for you to see a very touching video. It is about people that look to help other people. https://www.youtube.com/embed/uaWA2GbcnJU 18's, Marty On Wed, Jul 16, 2014 at 10:35 PM, Maria Cashion mariacash...@gmail.com wrote: Thanks, Marty. It really helps a lot to have feedback from people who know what this is all about. You are also a warrior and your story also proves it!!! Never loose hope. I am praying for my doctors grey matter to multiply on time for my next appointment!!! :) Just thought you would laugh at that Maria On Wed, Jul 16, 2014 at 10:15 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, It sounds like you had an array of very non caring doctors and very ignorant of exactly what medications are out there now, but you survived through them. I always say that you are your own best advocate because you know your body better then everyone else. Sometimes, which was in your case, these doctors don't listen to what you have to say. Remember me telling you that your a very strong willed person, well doesn't this prove it? I also told you that you were a miracle because of the very short time it took you to go from a hefty blast into MMR. Things just are happening right for you. I believe in GOD and HE is smiling down on you. Maria, when I had CML I too was in blast with a white blood count in excess of 486,000. At the time there were none of these TKI drugs but only Alpha Interferon that was only on a blind study, and I was given the opportunity of maybe or maybe not being on it. I knew that if I chose it that I could possibly be put onto a placebo so the only other option that I had was a bone marrow transplant. Since it was found that my sister was a perfect HLA match I decided to try that. At the time a perfect HLA match was considered to be a six out of six Antigen match while today I believe it is 10 out of ten. I have to honestly say that I really suffered through the transplant and way afterward. I had to live in a plastic bubble in the hospital for seven months. Having total body irradiation and huge doses of chemotherapy. That was more then 24 years ago and I am still here to write about it. However, now I have some more health problems. My kidneys have both failed and I am on dialysis for three times a week for more then 4 hours each session. But I still am living just waiting for a kidney transplant, hopefully it will come soon. So that's about my story and as I mentioned we all have our own stories, but when one tells of his or her plight it just seems to help the others on here. So, Maria you just keep posting anything that you want to and I guarantee that you will hear from someone on here with some valued advice because they have or already going through it. This is what is so good about this site because as you can see we all care deeply about each other. 18's, Marty On Wed, Jul 16, 2014 at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in
Re: [CMLHope] My story, Part I
Maria, Thank you for the clarification on consolidations. I guess you will have to continue to tell the various docs that you are NOT in blast and please review the records more closely. I understand the running away feeling. But that never works, does it? My husband in on a 50mg dose once a day. I understand the hating of BMAs. The last two my hubby had were done by a CML specialist in Ann Arbor, MI, at the Cancer Center at the University of Michigan. He goes to see this specialist twice a year, which means a flight from IL to MI, a night's stay in a hotel and a few needed expenses like food. But the hemotologist/oncologist he was seeing locally nearly killed him. So we feel the cost is justified. I digressed from my subject of BMAs. The last two were much more comfortable than the ones done locally at a general leukemia doc in St Louis. He does so many of these that he is really accomplished at doing it the least painfully. How are you feeling now? Are you able to work normally at your job? Joyce in IL On Jul 16, 2014, at 10:01 PM, Maria Cashion wrote: Dear Joyce: Consolidadtions are other chemotherapy treatments. I had 3 after the induction for a total of 4. For all 4 I had to stay put in the hospital for a month. As I mentioned, they first treated my CML as if it was AML. It was really ruff. The othet thing is that I am at a University Hospital (which in a way wxplains why so many doctors). Here in Puerto Rico this is the only hospital that really treats leaukemia patients...they are a specialized unit. but sometimes I feel like running away The problem that I have is that my doctors keep making reference to my blast crisis and still handle my case as if I was in the middle of one!!! ONly one of them, who graduated last year told me that I no ,longer have a problem with the blast crisis, that they took me out of it and that it is gone!!! Everybody else still clasiffies me as CML/AML which is really not the case. Now, about Sprycel. is your husband on a once a day or twice a day dose? I hate bone marrow aspirations :( Maria :) On Wed, Jul 16, 2014 at 10:47 PM, Joyce Mesnarich joy...@htc.net wrote: Maria, You are truly a miracle! So happy you had success with Sprycel. But these meds are very powerful and do cause serious side effects. It is a shame that our doctors do not always listen to our concerns. The fact that you had to see different doctors during this critical time is unfortunatebut you made it through. I am going to ask a question which may seem stupid, but I don't know what you mean by the term consolidations. Can you explain that? You are questioning the advisability of continuing Sprycel at 70 mg. I would think that as long as you have periodic bone marrow aspirations to be sure you are not back-sliding, and Sprycel at that dose is not negatively affecting you, I would be inclined to stay with it until and if your bad side effects return. My husband was allergic to Gleevec and put on Sprycel at 50 mg. In 4 months he was PCRU (undetectable). He has had some issure, but nothing so far that is serious. I think all of those on these TKIs are a little on edge wondering what the long term effect of them might be since they have only been in use since 2000. I hope you continue to do well. God bless and keep you. Joyce in IL On Jul 16, 2014, at 7:38 PM, Maria Cashion wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in
Re: [CMLHope] My story, Part I
Thank you Maria for sharing your story. WOW. You have been through so much and have come through the other side...sounds like you are doing great! And we are so happy for you and glad that you are here on line sharing your story with all of us. Lots of special folks here that's for sure. Take good care, Beth in Chicago. -Original Message- From: mariacashion mariacash...@gmail.com To: cmlhope cmlhope@googlegroups.com Sent: Tue, Jul 15, 2014 6:16 pm Subject: [CMLHope] My story, Part I Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom’s are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at construction sites doing archaeological monitoring, pickup my daughter at 4:00 PM or so and spending the rest of the day with her, cooking, waiting for my husband to come home from work. Putting the kid to sleep at night. Then, I would have to write my reports and if lucky, slept a couple of hours to start a new day… Mom can’t get sick…I started to feel more tired than usual, heavy night sweats, pain in the back, left side just above the waist…Doctors said it was nothing, probably my imagination…It got to the point that I would come home exhausted. I couldn’t even do house work. I would move the furniture to sweep and mop, then I had to sit for half an hour in order to be able to put everything back in place, Once I had my white blood count high and my doctor told me that that only meant that I had an infection… On December 18th 2011 I had to go to the ER of my nearest hospital. After examination and testing, xrays, ct, etc, they even considered sending me home until the CBC arrived. I was hospitalized just when the x-mass season was getting good and my 14 year old was on vacation from school. WE had so many plans that were never accomplished Knowing that my daughter was suffering my absence was the main factor that gave strength specially because not even my family came through. We were and still are just 3, my husband, my daughter and I… I was then transferred from the hospital I was in to a government operated hospital area known here in Puerto Rico as CENTRO MEDICO. The HOSPITAL UNIVERSITARIO DE ADULTOS has a specialized unit for leukemia patients. THEY SAVED MY LIFE. I had my first bone marrow aspiration and biopsy done at the first hospital. Results were in soon, 2 days or so and results were given to my husband to take over to the new hospital. Results were horrible, although at that time I didn’t pay much attention to them. Thank GOD I did not!!! I would have given up then and there. Final Diagnosis: Comprehensive Assessment: BLAST PHASE OF CHRONIC MYELOGENOUS LEUKEMIA WITH T(9,22) AND DELETION OF 9Q. The patients peripheral blood smear shows markedly increased blasts. The bone marrow core biopsy also reveals a large population of blasts; including 80% of the maroow spaces. The blasts are small to intermediate in size with high N:C ratio, immature chromatin and a small amount of cytoplasm with occasional cytoplasmic granules… the blasts are positive for MPO,CD66, LYSOZYME with no significant expression of CD34 AND CD117… PRONOSTICATING RESISTANCE TO TYROSINE INASE INHIBITORS AND UNFAVOURABLE PROGNOSIS… -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
Re: [CMLHope] My story, Part I
Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here welcome you to the group. It seems like a lot that you have been through but everything worked for you and you have your family to take care of. That was probably the main reason that you did so well. You seem to be a very strong willed person. Most people on here have similiar stories so your not alone, but the main thing here is that your doing so well. I always end any of my posts with two numbers, 1 and 8 which are the symbol for life. 18's to you Maria, and don't be a stranger here we all look forward to continue hearing from you. Marty On Tue, Jul 15, 2014 at 7:14 PM, mariacash...@gmail.com wrote: Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom’s are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at construction sites doing archaeological monitoring, pickup my daughter at 4:00 PM or so and spending the rest of the day with her, cooking, waiting for my husband to come home from work. Putting the kid to sleep at night. Then, I would have to write my reports and if lucky, slept a couple of hours to start a new day… Mom can’t get sick…I started to feel more tired than usual, heavy night sweats, pain in the back, left side just above the waist…Doctors said it was nothing, probably my imagination…It got to the point that I would come home exhausted. I couldn’t even do house work. I would move the furniture to sweep and mop, then I had to sit for half an hour in order to be able to put everything back in place, Once I had my white blood count high and my doctor told me that that only meant that I had an infection… On December 18th 2011 I had to go to the ER of my nearest hospital. After examination and testing, xrays, ct, etc, they even considered sending me home until the CBC arrived. I was hospitalized just when the x-mass season was getting good and my 14 year old was on vacation from school. WE had so many plans that were never accomplished Knowing that my daughter was suffering my absence was the main factor that gave strength specially because not even my family came through. We were and still are just 3, my husband, my daughter and I… I was then transferred from the hospital I was in to a government operated hospital area known here in Puerto Rico as CENTRO MEDICO. The HOSPITAL UNIVERSITARIO DE ADULTOS has a specialized unit for leukemia patients. THEY SAVED MY LIFE. I had my first bone marrow aspiration and biopsy done at the first hospital. Results were in soon, 2 days or so and results were given to my husband to take over to the new hospital. Results were horrible, although at that time I didn’t pay much attention to them. Thank GOD I did not!!! I would have given up then and there. Final Diagnosis: Comprehensive Assessment: BLAST PHASE OF CHRONIC MYELOGENOUS LEUKEMIA WITH T(9,22) AND DELETION OF 9Q. The patients peripheral blood smear shows markedly increased blasts. The bone marrow core biopsy also reveals a large population of blasts; including 80% of the maroow spaces. The blasts are small to intermediate in size with high N:C ratio, immature chromatin and a small amount of cytoplasm with occasional cytoplasmic granules… the blasts are positive for MPO,CD66, LYSOZYME with no significant expression of CD34 AND CD117… PRONOSTICATING RESISTANCE TO TYROSINE INASE INHIBITORS AND UNFAVOURABLE PROGNOSIS… -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit
Re: [CMLHope] My story, Part I
Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here welcome you to the group. It seems like a lot that you have been through but everything worked for you and you have your family to take care of. That was probably the main reason that you did so well. You seem to be a very strong willed person. Most people on here have similiar stories so your not alone, but the main thing here is that your doing so well. I always end any of my posts with two numbers, 1 and 8 which are the symbol for life. 18's to you Maria, and don't be a stranger here we all look forward to continue hearing from you. Marty On Tue, Jul 15, 2014 at 7:14 PM, mariacash...@gmail.com wrote: Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom’s are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at construction sites doing archaeological monitoring, pickup my daughter at 4:00 PM or so and spending the rest of the day with her, cooking, waiting for my husband to come home from work. Putting the kid to sleep at night. Then, I would have to write my reports and if lucky, slept a couple of hours to start a new day… Mom can’t get sick…I started to feel more tired than usual, heavy night sweats, pain in the back, left side just above the waist…Doctors said it was nothing, probably my imagination…It got to the point that I would come home exhausted. I couldn’t even do house work. I would move the furniture to sweep and
Re: [CMLHope] My story, Part I
Hi Maria, I'm on Gleevec since being dx'd 5 yrs and 4 months ago so I really don't know much about Sprycel or the other TKIs. But plenty of people in this group have tons of knowledge. You really are a miracle warrior! So glad you seem to feel better on the lower dose. I can't even fathom what you've been through but it certainly is inspirational. May God bless you and your family with continued success, medical stability and all good things Marcie Sent from my iPhone On Jul 16, 2014, at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here welcome you to the group. It seems like a lot that you have been through but everything worked for you and you have your family to take care of. That was probably the main reason that you did so well. You seem to be a very strong willed person. Most people on here have similiar stories so your not alone, but the main thing here is that your doing so well. I always end any of my posts with two numbers, 1 and 8 which are the symbol for life. 18's to you Maria, and don't be a stranger here we all look forward to continue hearing from you. Marty On Tue, Jul 15, 2014 at 7:14 PM, mariacash...@gmail.com wrote: Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom’s are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at
Re: [CMLHope] My story, Part I
Dera Marcie, you know what is really wierd I feel like it all happened so fast, I didnt have time to suffer any. I never got sick (vomited), nor had the runsI was really afraid that I would get sick, I was alone in the hospital. MY daughter was too young, and my husband had to work, do everything at home, make sure the kid got to school and then spend whatever time he had left with me. I prayed and I was blessed On Wed, Jul 16, 2014 at 9:05 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria, I'm on Gleevec since being dx'd 5 yrs and 4 months ago so I really don't know much about Sprycel or the other TKIs. But plenty of people in this group have tons of knowledge. You really are a miracle warrior! So glad you seem to feel better on the lower dose. I can't even fathom what you've been through but it certainly is inspirational. May God bless you and your family with continued success, medical stability and all good things Marcie Sent from my iPhone On Jul 16, 2014, at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here welcome you to the group. It seems like a lot that you have been through but everything worked for you and you have your family to take care of. That was probably the main reason that you did so well. You seem to be a very strong willed person. Most people on here have similiar stories so your not alone, but the main thing here is that your doing so well. I always end any of my posts with two numbers, 1 and 8 which are the symbol for life. 18's to you Maria, and don't be a stranger here we all look forward to continue hearing from
Re: [CMLHope] My story, Part I
Maria, I think those of us who are patents worry more about our kids, how they will handle the knowledge that we have cancer, than we worry about ourselves. We also have only one daughter and my biggest fear remains that something will happen to me before she is ready for it. And she is 26 years old! But we are very close and I sure hope to be around for a long, long time. Marcie Sent from my iPhone On Jul 16, 2014, at 9:12 PM, Maria Cashion mariacash...@gmail.com wrote: Dera Marcie, you know what is really wierd I feel like it all happened so fast, I didnt have time to suffer any. I never got sick (vomited), nor had the runsI was really afraid that I would get sick, I was alone in the hospital. MY daughter was too young, and my husband had to work, do everything at home, make sure the kid got to school and then spend whatever time he had left with me. I prayed and I was blessed On Wed, Jul 16, 2014 at 9:05 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria, I'm on Gleevec since being dx'd 5 yrs and 4 months ago so I really don't know much about Sprycel or the other TKIs. But plenty of people in this group have tons of knowledge. You really are a miracle warrior! So glad you seem to feel better on the lower dose. I can't even fathom what you've been through but it certainly is inspirational. May God bless you and your family with continued success, medical stability and all good things Marcie Sent from my iPhone On Jul 16, 2014, at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here
Re: [CMLHope] My story, Part I
Hi Maria, It sounds like you had an array of very non caring doctors and very ignorant of exactly what medications are out there now, but you survived through them. I always say that you are your own best advocate because you know your body better then everyone else. Sometimes, which was in your case, these doctors don't listen to what you have to say. Remember me telling you that your a very strong willed person, well doesn't this prove it? I also told you that you were a miracle because of the very short time it took you to go from a hefty blast into MMR. Things just are happening right for you. I believe in GOD and HE is smiling down on you. Maria, when I had CML I too was in blast with a white blood count in excess of 486,000. At the time there were none of these TKI drugs but only Alpha Interferon that was only on a blind study, and I was given the opportunity of maybe or maybe not being on it. I knew that if I chose it that I could possibly be put onto a placebo so the only other option that I had was a bone marrow transplant. Since it was found that my sister was a perfect HLA match I decided to try that. At the time a perfect HLA match was considered to be a six out of six Antigen match while today I believe it is 10 out of ten. I have to honestly say that I really suffered through the transplant and way afterward. I had to live in a plastic bubble in the hospital for seven months. Having total body irradiation and huge doses of chemotherapy. That was more then 24 years ago and I am still here to write about it. However, now I have some more health problems. My kidneys have both failed and I am on dialysis for three times a week for more then 4 hours each session. But I still am living just waiting for a kidney transplant, hopefully it will come soon. So that's about my story and as I mentioned we all have our own stories, but when one tells of his or her plight it just seems to help the others on here. So, Maria you just keep posting anything that you want to and I guarantee that you will hear from someone on here with some valued advice because they have or already going through it. This is what is so good about this site because as you can see we all care deeply about each other. 18's, Marty On Wed, Jul 16, 2014 at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope
Re: [CMLHope] My story, Part I
Thanks, Marty. It really helps a lot to have feedback from people who know what this is all about. You are also a warrior and your story also proves it!!! Never loose hope. I am praying for my doctors grey matter to multiply on time for my next appointment!!! :) Just thought you would laugh at that Maria On Wed, Jul 16, 2014 at 10:15 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, It sounds like you had an array of very non caring doctors and very ignorant of exactly what medications are out there now, but you survived through them. I always say that you are your own best advocate because you know your body better then everyone else. Sometimes, which was in your case, these doctors don't listen to what you have to say. Remember me telling you that your a very strong willed person, well doesn't this prove it? I also told you that you were a miracle because of the very short time it took you to go from a hefty blast into MMR. Things just are happening right for you. I believe in GOD and HE is smiling down on you. Maria, when I had CML I too was in blast with a white blood count in excess of 486,000. At the time there were none of these TKI drugs but only Alpha Interferon that was only on a blind study, and I was given the opportunity of maybe or maybe not being on it. I knew that if I chose it that I could possibly be put onto a placebo so the only other option that I had was a bone marrow transplant. Since it was found that my sister was a perfect HLA match I decided to try that. At the time a perfect HLA match was considered to be a six out of six Antigen match while today I believe it is 10 out of ten. I have to honestly say that I really suffered through the transplant and way afterward. I had to live in a plastic bubble in the hospital for seven months. Having total body irradiation and huge doses of chemotherapy. That was more then 24 years ago and I am still here to write about it. However, now I have some more health problems. My kidneys have both failed and I am on dialysis for three times a week for more then 4 hours each session. But I still am living just waiting for a kidney transplant, hopefully it will come soon. So that's about my story and as I mentioned we all have our own stories, but when one tells of his or her plight it just seems to help the others on here. So, Maria you just keep posting anything that you want to and I guarantee that you will hear from someone on here with some valued advice because they have or already going through it. This is what is so good about this site because as you can see we all care deeply about each other. 18's, Marty On Wed, Jul 16, 2014 at 8:38 PM, Maria Cashion mariacash...@gmail.com wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had
Re: [CMLHope] My story, Part I
Maria, You are truly a miracle! So happy you had success with Sprycel. But these meds are very powerful and do cause serious side effects. It is a shame that our doctors do not always listen to our concerns. The fact that you had to see different doctors during this critical time is unfortunatebut you made it through. I am going to ask a question which may seem stupid, but I don't know what you mean by the term consolidations. Can you explain that? You are questioning the advisability of continuing Sprycel at 70 mg. I would think that as long as you have periodic bone marrow aspirations to be sure you are not back-sliding, and Sprycel at that dose is not negatively affecting you, I would be inclined to stay with it until and if your bad side effects return. My husband was allergic to Gleevec and put on Sprycel at 50 mg. In 4 months he was PCRU (undetectable). He has had some issure, but nothing so far that is serious. I think all of those on these TKIs are a little on edge wondering what the long term effect of them might be since they have only been in use since 2000. I hope you continue to do well. God bless and keep you. Joyce in IL On Jul 16, 2014, at 7:38 PM, Maria Cashion wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com wrote: Hi Maria: How have you progressed since diagnosis and what meds do you take. I don't believe I've met (since we all know each other through the internet) anyone dx'd in blast stage. What an awful fright that must be. I relate to pushing off the symptoms and assuming it's just tiredness because I did the same for over a year. I hope you'll let us know how you are doing and you and your family are in my thoughts and prayers. Marcie Baltimore Sent from my iPad On Jul 15, 2014, at 8:10 PM, Marty Gartenberg wa2...@gmail.com wrote: Hi Maria, First I am glad to see you posting. You might have seen all of the people on here welcome you to the group. It seems like a lot that you have been through but everything worked for you and you have your family to take care of. That was probably the main reason that you did so well. You seem to be a very strong willed person. Most people on here have similiar stories so your not alone, but the main thing here is that your doing so
Re: [CMLHope] My story, Part I
Dear Joyce: Consolidadtions are other chemotherapy treatments. I had 3 after the induction for a total of 4. For all 4 I had to stay put in the hospital for a month. As I mentioned, they first treated my CML as if it was AML. It was really ruff. The othet thing is that I am at a University Hospital (which in a way wxplains why so many doctors). Here in Puerto Rico this is the only hospital that really treats leaukemia patients...they are a specialized unit. but sometimes I feel like running away The problem that I have is that my doctors keep making reference to my blast crisis and still handle my case as if I was in the middle of one!!! ONly one of them, who graduated last year told me that I no ,longer have a problem with the blast crisis, that they took me out of it and that it is gone!!! Everybody else still clasiffies me as CML/AML which is really not the case. Now, about Sprycel. is your husband on a once a day or twice a day dose? I hate bone marrow aspirations :( Maria :) On Wed, Jul 16, 2014 at 10:47 PM, Joyce Mesnarich joy...@htc.net wrote: Maria, You are truly a miracle! So happy you had success with Sprycel. But these meds are very powerful and do cause serious side effects. It is a shame that our doctors do not always listen to our concerns. The fact that you had to see different doctors during this critical time is unfortunatebut you made it through. I am going to ask a question which may seem stupid, but I don't know what you mean by the term consolidations. Can you explain that? You are questioning the advisability of continuing Sprycel at 70 mg. I would think that as long as you have periodic bone marrow aspirations to be sure you are not back-sliding, and Sprycel at that dose is not negatively affecting you, I would be inclined to stay with it until and if your bad side effects return. My husband was allergic to Gleevec and put on Sprycel at 50 mg. In 4 months he was PCRU (undetectable). He has had some issure, but nothing so far that is serious. I think all of those on these TKIs are a little on edge wondering what the long term effect of them might be since they have only been in use since 2000. I hope you continue to do well. God bless and keep you. Joyce in IL On Jul 16, 2014, at 7:38 PM, Maria Cashion wrote: Hi! My blast crisis was terminal and was behaving as AML. I had high dose chemo and Sprycel. After induction and much praying, my 70-80% blasts went down to zero and have remained as such until now. This happened in 1 month. I had 3 consolidations. Worked Sprycel to 140 mg for a while, but was lowered to 100mg. Right now I remain in complete molecular remission. My doctors consider me a miracle, for I am the first person in blast crisis that they have been able to save. I believe that they learned from what happened with me and have saved others. :) Last January I had a severe reaction to Sprycel. Everything that could go wrong went wrong. Weight gain, edema (all over), heart trouble, thyroid went crazy...I stopped Sprycel for a month and my doctor told me that we had to change medications. Had an additional bone marrow aspiration and biopsy, resulting in complete molecular remission. What is important to note is that Sprycel had been causing problems little by little. I told my doctors about it, but they did nothing until all went crazy. The main problem that I see is that they treat patiensts as if they were all stupid and wont really listen to you. Well, back to the story...After being off Sprycel for a month, everything went back to normal and I lost 37 pounds of water in that short time...Came to the clinic for my next appointment, another doctor was attending, didnt know me or my clinical history (he is a student in hematology/oncology) The main physician had only seen me once while I was on a consolidation at the hospital...She told me that she was really concerned about taking me off Sprycel bcause it had worked so well for me...so I was put back on my regular 100 mg/day Srycecl dose. Slowly, but steadily everything began agai, weight gain, When I went to my clinic appointment early june, I told my doctors. I wanted to have Sprycel withdrawn and change medications as I was told earlier. My hemo/onco, the one that really saved me at first; told me that theres was nothing else other than Sprycel and that ia had three more years.. ON the following appointment, luck changed and I had the doctor that first told me that there were other medications available for me. I told her that I wante to try lowering Sprcel to 70 mg daily before changing to another med. The Hema/Onco in charge agreed and told me that if this didnt work, he would change me to Bosulif. I am really feeling better with Sprycel at 70 mg daily, but have concerns as to whether it is a good idea... Maria Cashion On Tue, Jul 15, 2014 at 9:37 PM, 'Marcie Goodman' via CMLHope
Re: [CMLHope] My story, Part I
Maria, This had to be the worst time in your life. Thank you for sharing it with us. You have evidently come a long way and I am waiting for Part 2. We all gain strength from seeing the strength displayed by all the other CML warriors. Joyce in IL On Jul 15, 2014, at 6:14 PM, mariacash...@gmail.com wrote: Well guys, here is how it all started, and how I was diagnosed. I am an anthropologist (physical anthropologist and archeologist), a wife and a mother. Of course, I am used to working hard, almost like a slave (all mom's are J). I guess about 7 years ago, I started feeling a little more tired than usual...I mean, field work is hard, working from 7:30 AM until 3:00 PM at construction sites doing archaeological monitoring, pickup my daughter at 4:00 PM or so and spending the rest of the day with her, cooking, waiting for my husband to come home from work. Putting the kid to sleep at night. Then, I would have to write my reports and if lucky, slept a couple of hours to start a new day... Mom can't get sick...I started to feel more tired than usual, heavy night sweats, pain in the back, left side just above the waist...Doctors said it was nothing, probably my imagination...It got to the point that I would come home exhausted. I couldn't even do house work. I would move the furniture to sweep and mop, then I had to sit for half an hour in order to be able to put everything back in place, Once I had my white blood count high and my doctor told me that that only meant that I had an infection... On December 18th 2011 I had to go to the ER of my nearest hospital. After examination and testing, xrays, ct, etc, they even considered sending me home until the CBC arrived. I was hospitalized just when the x-mass season was getting good and my 14 year old was on vacation from school. WE had so many plans that were never accomplished Knowing that my daughter was suffering my absence was the main factor that gave strength specially because not even my family came through. We were and still are just 3, my husband, my daughter and I... I was then transferred from the hospital I was in to a government operated hospital area known here in Puerto Rico as CENTRO MEDICO. The HOSPITAL UNIVERSITARIO DE ADULTOS has a specialized unit for leukemia patients. THEY SAVED MY LIFE. I had my first bone marrow aspiration and biopsy done at the first hospital. Results were in soon, 2 days or so and results were given to my husband to take over to the new hospital. Results were horrible, although at that time I didn't pay much attention to them. Thank GOD I did not!!! I would have given up then and there. Final Diagnosis: Comprehensive Assessment: BLAST PHASE OF CHRONIC MYELOGENOUS LEUKEMIA WITH T(9,22) AND DELETION OF 9Q. The patients peripheral blood smear shows markedly increased blasts. The bone marrow core biopsy also reveals a large population of blasts; including 80% of the maroow spaces. The blasts are small to intermediate in size with high N:C ratio, immature chromatin and a small amount of cytoplasm with occasional cytoplasmic granules... the blasts are positive for MPO,CD66, LYSOZYME with no significant expression of CD34 AND CD117... PRONOSTICATING RESISTANCE TO TYROSINE INASE INHIBITORS AND UNFAVOURABLE PROGNOSIS... -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups CMLHope group. To unsubscribe from this group and stop receiving emails from it, send an email to cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
