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-unsubscribe@ > 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-unsubscribe@ > 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.
