Re: [CMLHope] The wounded Soldier
Hi Kathy, I actually have had 96 blood transfusions as well as dozens of platelet infusions not mention about a dozen Gamagloblin infusions while I was having my bone marrow transfusion. Let me explain why. I was born with type O+ blood. Since my donor (my sister) was B+ and also a perfect HLA match but the only problem was our different blood types. I had to become what is called a Chimera. And unlike a solid organ transplant where the blood typing must be the same between the donor and that have to be reciprocal of each other. That is why I had to have so many blood transfusions. Now it is over twenty seven years later and I had to have a kidney transplant and the donor was also a perfect HLA match and even our blood types matched. Now one more piece of information. If my Kidney came from a living donor then it would be okay to have a blood type of O+ but not from a deceased donor. They are making some progress in mis-matched organ transplants. So in my case I didn't acquire CML because I didn't have to have all of those blood transfusions, I got CML before I got all of the transfusions. Kathy, I would love to put you into the zero Zavie's list but even though I am number 1 on it I am unable to do it unfortunately Zavie is no longer with us. However I am so glad to hear about your progress in getting rid of those nasty cells is working so well. 18's, Marty On Sat, May 21, 2016 at 1:43 PM, kathy walls wrote: > Marty > Have you heard about one have had mega blood transfusions getting CML? > Since 2005 I have over 25 transfusions due to sever blood loss during > sugeries? Happy to say now I'm at 0.04 Can I get a Zevia ### > > Sent from my iPhone > > On May 21, 2016, at 12:04 PM, Marty Gartenberg wrote: > > Jeanie, > > It all comes down to something that I wrote about the why's... > > Why me? or Why not me. > > You asked since no one in your family ever had Leukemia then why did you? > Also why me? Believe me I have tons of information that I have collected > for over 27 years and I have stumbled into some of them. > > Since I have been an Electrical Engineer for most of my life I had to work > on many projects concerning very high voltages that also included high > amounts of radio frequencies especially from some of the power stations > that feed radio and television transmitters. > > I had some friends that used to work for Con Edison in one of the power > sub stations which I had to be involved with from time to time. Whenever I > would enter the felicity the hair on my head and arms would stand on edge > even though some of those high voltage tunnels required everyone in those > high voltage areas had to wear something called a Faraday shield and some > of the power coming into that felicity from the main generating station was > around 500,000 volts. > > As it turned out there were six people working in the facility but not > every time in those high voltage tunnels, but I guess enough for everyone > to have acquired cancer of different kinds, mostly Leukemia AML but also > brain, lung and Myelodysplastic Syndrome which proved fatal to all of them > except for the one with Myelodysplastic Syndrome which had no cure. > > Amazingly he seemed to have beaten it without any explanation from the > doctor, and I actually recommended him to that doctor because I knew one of > the doctors at the time that I had my bone marrow transplant 26 years ago > that specialized in Myelodysplastic Syndrome so I asked him does > this ever happen? He told me that every once in a while it does happen. > > That man never returned to working with anything to do with high voltage > electricity. Eventually when I moved to Florida we lost contact with each > other. > > There was another article that I read about power lines that ran through > the back yards of peoples homes and it was found that a small percentage of > those people that lived near any power lines that had about 13,000 volts > did in fact have a higher chance of them getting cancer then those that did > not live near ant power lines. > > Also how about what is in the our water or air or the food that we eat and > drink? So let's say that if you are not the one that has the then it May not > happen to you. Who knows? Only time may tell? > > 18's, > > Marty > > > On Sat, May 21, 2016 at 10:49 AM, 'Icandoallttc' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Yes Marty I've always wondered why I got leukemia. I am the youngest of >> 11 children and no cancer in family except lung cancer and 1 breast cancer >> in my older sister. >> I didn't even know much about leukemia when I was dx. >> Even with fighting cml for 12 years I have had a full rich life. >> I got to go to the mountains with my daughters and granddaughter. We >> stayed in a beautiful cabin high in the mountains. >> We toured the Great Smoky Mountains and they are beautiful. >> I am now spending a week with my daughters and we are enjoying our visit. >> Yes we are born and then we
Re: [CMLHope] The wounded Soldier
Marty Have you heard about one have had mega blood transfusions getting CML? Since 2005 I have over 25 transfusions due to sever blood loss during sugeries? Happy to say now I'm at 0.04 Can I get a Zevia ### Sent from my iPhone > On May 21, 2016, at 12:04 PM, Marty Gartenberg wrote: > > Jeanie, > > It all comes down to something that I wrote about the why's... > > Why me? or Why not me. > > You asked since no one in your family ever had Leukemia then why did you? > Also why me? Believe me I have tons of information that I have collected for > over 27 years and I have stumbled into some of them. > > Since I have been an Electrical Engineer for most of my life I had to work on > many projects concerning very high voltages that also included high amounts > of radio frequencies especially from some of the power stations that feed > radio and television transmitters. > > I had some friends that used to work for Con Edison in one of the power sub > stations which I had to be involved with from time to time. Whenever I would > enter the felicity the hair on my head and arms would stand on edge even > though some of those high voltage tunnels required everyone in those high > voltage areas had to wear something called a Faraday shield and some of the > power coming into that felicity from the main generating station was around > 500,000 volts. > > As it turned out there were six people working in the facility but not every > time in those high voltage tunnels, but I guess enough for everyone to have > acquired cancer of different kinds, mostly Leukemia AML but also brain, lung > and Myelodysplastic Syndrome which proved fatal to all of them except for the > one with Myelodysplastic Syndrome which had no cure. > > Amazingly he seemed to have beaten it without any explanation from the > doctor, and I actually recommended him to that doctor because I knew one of > the doctors at the time that I had my bone marrow transplant 26 years ago > that specialized in Myelodysplastic Syndrome so I asked him does > this ever happen? He told me that every once in a while it does happen. > > That man never returned to working with anything to do with high voltage > electricity. Eventually when I moved to Florida we lost contact with each > other. > > There was another article that I read about power lines that ran through the > back yards of peoples homes and it was found that a small percentage of those > people that lived near any power lines that had about 13,000 volts did in > fact have a higher chance of them getting cancer then those that did not live > near ant power lines. > > Also how about what is in the our water or air or the food that we eat and > drink? So let's say that if you are not the one that has the then it May not > happen to you. Who knows? Only time may tell? > > 18's, > > Marty > > >> On Sat, May 21, 2016 at 10:49 AM, 'Icandoallttc' via CMLHope >> wrote: >> Yes Marty I've always wondered why I got leukemia. I am the youngest of 11 >> children and no cancer in family except lung cancer and 1 breast cancer in >> my older sister. >> I didn't even know much about leukemia when I was dx. >> Even with fighting cml for 12 years I have had a full rich life. >> I got to go to the mountains with my daughters and granddaughter. We stayed >> in a beautiful cabin high in the mountains. >> We toured the Great Smoky Mountains and they are beautiful. >> I am now spending a week with my daughters and we are enjoying our visit. >> Yes we are born and then we die but sickness teaches us to live each day as >> it comes love each other with the time God gives us. >> Blessings to all >> ❤️❤️ >> >> My Motto: Faith and Pills❤️ >> With 💗Jeanie 🐟🐟18,s Chi >> Dx 1/2004. CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib January 2015 >> Dr Balducci Moffitt Cancer Center >> >>> On May 20, 2016, at 10:30 AM, Marty Gartenberg wrote: >>> >>> I was thinking about most of us that have been through a mirage of >>> illnesses, myself included, and in thinking about it I have come to the >>> conclusion "why me" syndrome. However rather saying this, even though we >>> may be suffering in our own ways why not say "why not me"?. >>> In effect anyone that has had any health disturbance/s in their lives are >>> in fact a wounded solider, however, it has also become that wounds heal and >>> this makes us go on. >>> I remember two movies that put an impression on me. One was the Shawshank >>> Redemption. One of the characters, Morgan Freeman told an inmate that "you >>> either get to living or get to dying. >>> The other was Forrest Gump, played by Tom Hanks. He was sitting on a bench >>> at a bus stop and was talking to a woman who was a total stranger to him. >>> One of the remarks he made, and this was after his mother had passed away. >>> He said she once taught him a lesson about life, "life is lik
Re: [CMLHope] The wounded Soldier
Jeanie, It all comes down to something that I wrote about the why's... Why me? or Why not me. You asked since no one in your family ever had Leukemia then why did you? Also why me? Believe me I have tons of information that I have collected for over 27 years and I have stumbled into some of them. Since I have been an Electrical Engineer for most of my life I had to work on many projects concerning very high voltages that also included high amounts of radio frequencies especially from some of the power stations that feed radio and television transmitters. I had some friends that used to work for Con Edison in one of the power sub stations which I had to be involved with from time to time. Whenever I would enter the felicity the hair on my head and arms would stand on edge even though some of those high voltage tunnels required everyone in those high voltage areas had to wear something called a Faraday shield and some of the power coming into that felicity from the main generating station was around 500,000 volts. As it turned out there were six people working in the facility but not every time in those high voltage tunnels, but I guess enough for everyone to have acquired cancer of different kinds, mostly Leukemia AML but also brain, lung and Myelodysplastic Syndrome which proved fatal to all of them except for the one with Myelodysplastic Syndrome which had no cure. Amazingly he seemed to have beaten it without any explanation from the doctor, and I actually recommended him to that doctor because I knew one of the doctors at the time that I had my bone marrow transplant 26 years ago that specialized in Myelodysplastic Syndrome so I asked him does this ever happen? He told me that every once in a while it does happen. That man never returned to working with anything to do with high voltage electricity. Eventually when I moved to Florida we lost contact with each other. There was another article that I read about power lines that ran through the back yards of peoples homes and it was found that a small percentage of those people that lived near any power lines that had about 13,000 volts did in fact have a higher chance of them getting cancer then those that did not live near ant power lines. Also how about what is in the our water or air or the food that we eat and drink? So let's say that if you are not the one that has the then it May not happen to you. Who knows? Only time may tell? 18's, Marty On Sat, May 21, 2016 at 10:49 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > Yes Marty I've always wondered why I got leukemia. I am the youngest of > 11 children and no cancer in family except lung cancer and 1 breast cancer > in my older sister. > I didn't even know much about leukemia when I was dx. > Even with fighting cml for 12 years I have had a full rich life. > I got to go to the mountains with my daughters and granddaughter. We > stayed in a beautiful cabin high in the mountains. > We toured the Great Smoky Mountains and they are beautiful. > I am now spending a week with my daughters and we are enjoying our visit. > Yes we are born and then we die but sickness teaches us to live each day > as it comes love each other with the time God gives us. > Blessings to all > ❤️❤️ > > My Motto: Faith and Pills❤️ > With 💗Jeanie 🐟🐟18,s Chi > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > > On May 20, 2016, at 10:30 AM, Marty Gartenberg wrote: > > *I was thinking about most of us that have been through a mirage of > illnesses, myself included, and in thinking about it I have come to the > conclusion "why me" syndrome. However rather saying this, even though we > may be suffering in our own ways why not say "why not me"?.* > > *In effect anyone that has had any health disturbance/s in their lives are > in fact a wounded solider, however, it has also become that wounds heal and > this makes us go on. * > > *I remember two movies that put an impression on me. One was the Shawshank > Redemption. One of the characters, Morgan Freeman told an inmate that "you > either get to living or get to dying.* > > *The other was Forrest Gump, played by Tom Hanks. He was sitting on a > bench at a bus stop and was talking to a woman who was a total stranger to > him. One of the remarks he made, and this was after his mother had passed > away. He said she once taught him a lesson about life, "life is like a box > of chocolates you never know what you will get" * > > > > > > *When we think about it the one thing that we still have is life. We also > know that every person in this world will have already been borne and > eventually will have to die, it is just how we live our lives in between > those times that really matters, and makes us what we are.* > > *Try to be kind to most people, be compassionate, say hello every one once > in a while.* > *Remember, that life is what
Re: [CMLHope] Re: Gleevec resistance? Or just a spike?
Thank you for the note. Regular blood work is ok. My onco thinks it's a blip. Keeping figures crossed!! Good luck and thanks for the reply.. Best Regards, Rakesh Doshi (513) 205-7469 > On May 21, 2016, at 10:27 AM, 'Icandoallttc' via CMLHope > wrote: > > Hi Raj > I was in Gleevec for 5 years and then it quit working for me. My platelets > and WBC shot up really high. I was put in Tasigna but it never worked for me. > Then I went in sprycel and it worked for a few years and put me in remission. > It quit working and again my platelets and WBC shot up. I'm on Ponatinib now > and doing really good in it. Make sure not to do proton pump inhibitors > while on tkis. > How are your regular blood results. > Good luck. > > > My Motto: Faith and Pills❤️ > With 💗Jeanie 🐟🐟18,s Chi > Dx 1/2004. CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib January 2015 > Dr Balducci Moffitt Cancer Center > >> On May 19, 2016, at 12:10 AM, Richard H wrote: >> >> When I have never had a long response of 0.000 response. I was off Gleevec >> for 6 1/2 years, when had to go back on Gleevec. I have actually reduced >> Gleevec to 300mg because CML likes to to work on my blood. I run from 0.000 >> to 0.00.3 on my Bcd-abl every 3-6 months. It is not being called >> resistance, but my controlled CML world seems to stay very controlled at >> this point. So if they put you on Gleevec again it should be Okay. When I >> went back on 400 mg of Gleevec it started decreasing my hemg. and I was >> headed for more transfusions. When my ONC lowered it to 300mg we could get >> Procrit to build my hemg so that I don't have to have a transfusion. I was >> diagnosed in 2002. >> >> Keep a positive mind and know that will help to pass this bump in the road. >> Gleevec has the most history for our ONC to work with and that is the reason >> I have remained on Gleevec, Other health problems makes the newer drugs >> make changing to them not the best choice. >> >> Richard H. >> >>> On Wednesday, May 18, 2016 at 8:05:48 PM UTC-5, Raj wrote: >>> Hello All, >>> I am new to the group. Hope you can help answer my question. >>> History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I >>> was in major molecular response and then undetectable (0.000) for around > >>> 10 years or so.. >>> Now suddenly last month in my last Bcd-abl it showed that I am >>> 0.018 and repeating it after a month, it's 0.021 so little bit higher than >>> last one.. >>> Is it considered gleevec resistance? Where I need to switch? >>> BTW: >>> I missed 3 doses or so in the last month and that is >>> Where it (Bcd-abl by PCR) came 0.018 but not sure if 3 days can be that >>> critical. Also I don't take medicine at the same time sometimes with >>> breakfast sometimes with late lunch. Can that suddenly change the response? >>> >>> Any thoughts or similar situation insight is much appreciated.. >>> Thanks >>> Raj >>> >> >> -- >> -- >> [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 a topic in the Google > Groups "CMLHope" group. > To unsubscribe from this topic, visit > https://groups.google.com/d/topic/cmlhope/MNT3rmp0wDI/unsubscribe. > To unsubscribe from this group and all its topics, 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 grou
Re: [CMLHope] The wounded Soldier
Yes Marty I've always wondered why I got leukemia. I am the youngest of 11 children and no cancer in family except lung cancer and 1 breast cancer in my older sister. I didn't even know much about leukemia when I was dx. Even with fighting cml for 12 years I have had a full rich life. I got to go to the mountains with my daughters and granddaughter. We stayed in a beautiful cabin high in the mountains. We toured the Great Smoky Mountains and they are beautiful. I am now spending a week with my daughters and we are enjoying our visit. Yes we are born and then we die but sickness teaches us to live each day as it comes love each other with the time God gives us. Blessings to all ❤️❤️ My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On May 20, 2016, at 10:30 AM, Marty Gartenberg wrote: > > I was thinking about most of us that have been through a mirage of illnesses, > myself included, and in thinking about it I have come to the conclusion "why > me" syndrome. However rather saying this, even though we may be suffering in > our own ways why not say "why not me"?. > > In effect anyone that has had any health disturbance/s in their lives are in > fact a wounded solider, however, it has also become that wounds heal and this > makes us go on. > > I remember two movies that put an impression on me. One was the Shawshank > Redemption. One of the characters, Morgan Freeman told an inmate that "you > either get to living or get to dying. > > The other was Forrest Gump, played by Tom Hanks. He was sitting on a bench at > a bus stop and was talking to a woman who was a total stranger to him. One of > the remarks he made, and this was after his mother had passed away. He said > she once taught him a lesson about life, "life is like a box of chocolates > you never know what you will get" > > > > > > When we think about it the one thing that we still have is life. We also know > that every person in this world will have already been borne and eventually > will have to die, it is just how we live our lives in between those times > that really matters, and makes us what we are. > > Try to be kind to most people, be compassionate, say hello every one once in > a while. > > Remember, that life is what you put in to it, and get out of it. > 18,s > Marty Gartenberg > > -- > -- > [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] Re: Gleevec resistance? Or just a spike?
Hi Raj I was in Gleevec for 5 years and then it quit working for me. My platelets and WBC shot up really high. I was put in Tasigna but it never worked for me. Then I went in sprycel and it worked for a few years and put me in remission. It quit working and again my platelets and WBC shot up. I'm on Ponatinib now and doing really good in it. Make sure not to do proton pump inhibitors while on tkis. How are your regular blood results. Good luck. My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On May 19, 2016, at 12:10 AM, Richard H wrote: > > When I have never had a long response of 0.000 response. I was off Gleevec > for 6 1/2 years, when had to go back on Gleevec. I have actually reduced > Gleevec to 300mg because CML likes to to work on my blood. I run from 0.000 > to 0.00.3 on my Bcd-abl every 3-6 months. It is not being called resistance, > but my controlled CML world seems to stay very controlled at this point. So > if they put you on Gleevec again it should be Okay. When I went back on 400 > mg of Gleevec it started decreasing my hemg. and I was headed for more > transfusions. When my ONC lowered it to 300mg we could get Procrit to build > my hemg so that I don't have to have a transfusion. I was diagnosed in 2002. > > Keep a positive mind and know that will help to pass this bump in the road. > Gleevec has the most history for our ONC to work with and that is the reason > I have remained on Gleevec, Other health problems makes the newer drugs > make changing to them not the best choice. > > Richard H. > >> On Wednesday, May 18, 2016 at 8:05:48 PM UTC-5, Raj wrote: >> Hello All, >> I am new to the group. Hope you can help answer my question. >> History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I >> was in major molecular response and then undetectable (0.000) for around > >> 10 years or so.. >> Now suddenly last month in my last Bcd-abl it showed that I am >> 0.018 and repeating it after a month, it's 0.021 so little bit higher than >> last one.. >> Is it considered gleevec resistance? Where I need to switch? >> BTW: >> I missed 3 doses or so in the last month and that is >> Where it (Bcd-abl by PCR) came 0.018 but not sure if 3 days can be that >> critical. Also I don't take medicine at the same time sometimes with >> breakfast sometimes with late lunch. Can that suddenly change the response? >> >> Any thoughts or similar situation insight is much appreciated.. >> Thanks >> Raj >> > > -- > -- > [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.
