So true Marty You aren’t even on tki’s and look what you’ve been through. Thank you for this email. Love you so very much Jeanie
My Motto: Faith and Pills With Love Jeanie 🐠free Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/ 2015 New Doctor--Dr Martine Extermann Moffitt Cancer center sept 2017 Dr Balducci retired 0 CBL. ABL > On Jul 10, 2018, at 8:53 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Oh Jeanie, > > first let me take you back to something I wrote to Richard > > I have heard a lot of people mentioning that they blame some of the TKI that > they are taking. Perhaps that may be so, but what if it isn't that at all? > That is why they need to consult with their doctors because that is his or > her job. 👉And if they feel that there is someone that can help as well then > get a second opinion.👈 Don't forget they won't be hurt or offended because > they are all getting together to help you. > > > And we will now continue on. Please read this. I took the time to write it > for a reason and I see that you took my 👉advice👈. A lot more... But I want to > hug your grand-daughter. My father once taught me a lesson and I think that > you may want to pass this onto her, and yourself as well. > > When a person/s learns something new everyday then they become smarter. When > a person/s refuses to learn something every day then they revert back to > yesterday. > > Hum, let me think..... Oh yea I think that your grand-daughter already knows > this? > > > "Take it Day by day and as my granddaughter says". She said “every little > thing’s gonna be alright.” > ❤️ > Blood transfusions: A sort of long story but learning something new every day > made me smarter and I am still alive... Jeanie I don't blame you for not > wanting other peoples blood in you but let me ask you a question? How many > units of blood did you require? Did it help you? Well i needn't know the > answer because I already know but nothing that you told me but I know and > here is why. > > I had O+ blood and my sister had B+ blood. So my transplant doctor told me > that since my white blood count was past 186,000 that I need to have the bone > marrow transplant now. Or I may not survive because I was in Blast crises > that I was in. > > But he knew about my blood type wasn't a match for my sister but everything > was perfect but the matching type. He told me that there may be a way to > change my blood type but it could also cause my death. I then told him that i > was dieing anyway so let's try it. > > He started it before my transplant. It would require that I would have to get > many, many blood transfusions as well a a lot of platelets infusions, and > Gama globulin and other human blood products. > > Who already knew about this? R***** Z********. Who showed up with 41 > "members" of his "family" > (Yes you know what I mean about this) ready to donate blood. But there was a > problem. At that time there was a new disease called AIDS and all of the > blood banks started testing and this slowed down the collection of gathering > of blood. > > Not to keep you on the edge of your seat. I once helped save a woman's life > because she was dying of stage four breast cancer and I did this because I > knew a doctor who may help her, and it took more then two years. He never > forgot me. > > Some people just have their power but most don't. He was one of those that > did to a certain extent. The way that I look about it was one life foe > another. > > In order to have my blood type converted from O to B I needed 96 units of > blood and I already knew where 41 of them came from. Just to let you know if > a donated unit of blood did not match my blood profile it would be switched > and someone else would get that unit of blood and a "trade" was made. I am > now called a Chimera with B+ blood in me. > > Now I am going forward in my life once more: Twenty years later my kidneys > started started to fail. I was on Dialysis for four years and through a > miracle I was able to get a kidney transplant and while I was outside of the > operating room I noticed a white cooler with a red cross and it said "Human > organs, B right side short urethra. > > I almost jumped out of the gurney because it was B type and then I remembered > that I used to be O type. Now what are the chances that this could ever > happen? > > Now Jeanie and all of the rest of you reading this, don't you think that > there truly Miracles floating around? Just ask your grand daughter....Now you > already know what I know. Have you learned anything new today? I have. > > > 18's > > Marty > > > > > > > > >> On Tue, Jul 10, 2018 at 6:01 AM, 'Jeanie' via CMLHope >> <cmlhope@googlegroups.com> wrote: >> Hi all >> I had this problem when on Tasigna. My hmg dropped to 8. I argued with my >> onc as I didn’t want someone else’s blood in me. I knew if he would take me >> off the tasigna the hbg would come back up. He finally talked me into it and >> I had to stay for hours getting transfusions. As most of you know not fun. >> Tasigna about killed me and I landed back in the hospital until I could talk >> my doctor into giving me Sprycel. I decided to make the move to Moffitt and >> never regretted it. >> Good luck to everyone. Take it Day by day and as my granddaughter says, >> “every little thing’s gonna be alright.” >> ❤️ >> >> My Motto: >> Faith and Pills >> With Love >> Jeanie >> 🐠free >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/ 2015 >> New Doctor--Dr Martine Extermann >> Moffitt Cancer center sept 2017 >> Dr Balducci retired >> >> 0 CBL. ABL >> >>> On Jul 9, 2018, at 10:21 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Richard, first thing is when your hemoglobin drops to 10 or below then is >>> the time that procrit generic Epoetin Alfa should start. It should increase >>> your red/hemoglobin count. However it may take a week or two to start >>> showing results. Why don't you mention this to your doctor. >>> Also, have your kidney function checked as well. >>> >>> When my kidneys started to fail I was on Dialsys and found that my >>> hemoglobin level started dropping. Kidney function has a lot to do with >>> that. The reason why is because there is a hormone called Erythropoietin >>> which is released in response to hypoxia (low levels of oxygen at tissue >>> level) in the renal circulation. It stimulates erythropoiesis (production >>> of red blood cells) in the bone marrow. I am writing this in bold font to >>> make sure that it can be understood, it is that important! >>> >>> When I was on Diaysis sometimes my HGB would drop to from 7% to 9% and I >>> felt like I coulden't even get out of bed. My wife would help me into her >>> car and help me into the Dialysis center. I lived a horrible life until I >>> had a kidney Transplant. >>> >>> I have heard a lot of people mentioning that they blame some of the TKI >>> that they are taking. Perhaps that may be so, but what if it isn't that at >>> all? That is why they need to consult with their doctors because that is >>> his or her job. And if they feel that there is someone that can help as >>> well then get a second opinion. Don't forget they won't be hurt or offended >>> because they are all getting together to help you. >>> >>> Richard and everyone else, there was a time a very long time ago that my >>> father tought me something. He said that everyone needs to learn something >>> new everyday because it will make you smarter. If you refuse to learn >>> something new everyday then you will revert back to yesterday. And he was >>> right! >>> >>> 18's >>> >>> Marty >>> >>>> On Sun, Jul 8, 2018 at 11:31 PM, Richard H <rbhuffm...@gmail.com> wrote: >>>> Yes, I have been struggling with this for years. I have had Transfusions, >>>> and now check my CBC every month to see if I need to take Procreate to >>>> bring my blood level back up. I am currently on 200 mg Gleevec daily >>>> because my CML levels will rise if I don't use it as a maintenance >>>> feature. I am approaching 16 1/2 years since diagnosis. >>>> >>>> Richard H. >>>> >>>>> On Saturday, July 7, 2018 at 1:04:15 PM UTC-5, Vivi wrote: >>>>> I suddenly became terribly anemic and my doctor cut my intake of 400mg >>>>> Gleevec daily in half. It took five months but I am no longer anemic and >>>>> the CML does not seem to have become visible as yet. Has anyone else had >>>>> a problem like this? >>>> >>>> -- >>>> -- >>>> [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. >> >> -- >> -- >> [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. -- -- [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.
