My dr gave me 50 mg but I am taking half. Should I take the full dose? 18’s How often to get tested? 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 17, 2018, at 3:39 PM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Great drug! I have been taking it for many, many years. What dose is he on? > > 18's, > > Marty > >> On Tue, Jul 17, 2018 at 3:30 PM, Joyce Mesnarich <joy...@htc.net> wrote: >> Jeanie, >> My husband has had hypothyroidism for years…..before he got CML. It never >> caused him any problems. It was diagnosed at a regular office visit with a >> blood test. He takes levothyroxin and has regular blood tests. >> >> Joyce in Southern Illinois >> >> >>> On Jul 17, 2018, at 10:57 AM, 'Jeanie' via CMLHope >>> <cmlhope@googlegroups.com> wrote: >>> >>> Anyone have a thyroid problem? >>> >>> 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 15, 2018, at 12:44 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>>> >>>> Okay Jeanie, >>>> >>>> Since there is a lot to talk about I will do it between your lines. >>>> >>>> Hi >>>> That’s cute >>>> When I first started dating my hubby I was 16. When we went to leave I >>>> hugged and kissed my mom and dad goodbye. He told me later he had never >>>> seen that before. >>>> >>>> OH I DID, BECAUSE MY PARENTS CAME FROM EUROPE AND IT WAS THEIR CUSTOM THE >>>> WAY THAT THEY WOULD USUALLY DO IT WAS FIRST CAME MY MOM AND SHE WOULD HUG >>>> AND THEN KISS ME. THEN CAME MY DAD. WHAT HE WOULD DO WAS FIRST HUG ME THEN >>>> KISS ME AND THEN HE WOULD GIVE ME WHAT WAS CALLED A KNIPPLE. DO YOU KNOW >>>> WHAT A KINPPLE IS? WELL IT HURT LIKE HE NEVER WANTED ME TO FORGET HIM. >>>> >>>> HE WOULD GRASP MY CHECK BETWEEN HIS THUMB AND INDEX FINGERS AND SORT OF >>>> TWIST AND THEN LET GO. I COULDN'T WAIT TILL IT WAS OVER BUT AS I LEARNED >>>> LATER ON IN LIFE HE JUST WANTED ME TO KNOW THAT HE AND MOM WOULD NEVER >>>> FORGET THEM >>>> >>>> His mom and dad never hugged or kissed him. It was just the way we were. >>>> Kiss goodbye and kiss hello. >>>> >>>> BY THE WAY THERE IS A HEBREW WORD THAT YOU HAVE PROBABLY HEARD BEFORE, >>>> SHALOM. IT MEANS WHEN YOU ARE APPROACHING SOMEONE, HELLO, WHEN YOU ARE ON >>>> THEIR SIDE IT MEANS PEACE AND WHEN YOU PASS THEM IT MEANS GOODBYE >>>> >>>> I THINK THAT HE JUST NEEDED A KNIPPLE. >>>> >>>> Same way with my kids. I tell them a hug is better than a pill. >>>> How are you today? >>>> >>>> HEY JEANIE, KINPPLES FOR EVERY ONE. 😀 >>>> >>>> I’m waiting on my daughter as she will take me to a late lunch. >>>> I find my appetite not as good as it used to be. How bout you? >>>> >>>> BOTH OF MY PARENTS WERE COOKS AND MY FATHER WAS ALSO A BAKER. WE DIDN'T >>>> HAVE A LOT OF MONEY BUT WE SURE HAD A LOT OF BREAD. WE LEARNED TO MAKE DO. >>>> A WHOLE STORY BEHIND THIS BUT FOR ANOTHER TIME... >>>> >>>> I loved Millie’s cooking and recipes. I sure do miss her. >>>> She fought hard. >>>> I remember when she started losing the use of her arms she said she didn’t >>>> know what she would do if she couldn’t do her sewing and etc. >>>> though I never met her I felt I knew her all my life. More later—— >>>> >>>> THAT'S WHY I CALLED HER MOMMY LOTTIE. >>>> >>>> And she knew what 18's meant. >>>> >>>> So 18's, >>>> >>>> Marty, and a Knipple to you. >>>> >>>> >>>> >>>> >>>>> On Sun, Jul 15, 2018 at 12:05 PM, 'Jeanie' via CMLHope >>>>> <cmlhope@googlegroups.com> wrote: >>>>> Hi >>>>> That’s cute >>>>> When I first started dating my hubby I was 16. When we went to leave I >>>>> hugged and kissed my mom and dad goodbye. He told me later he had never >>>>> seen that before. His mom and dad never hugged or kissed him. It was >>>>> just the way we were. >>>>> Kiss goodbye and kiss hello. >>>>> Same way with my kids. I tell them a hug is better than a pill. >>>>> How are you today? >>>>> I’m waiting on my daughter as she will take me to a late lunch. >>>>> I find my appetite not as good as it used to be. How bout you? >>>>> I loved Millie’s cooking and recipes. I sure do miss her. >>>>> She fought hard. >>>>> I remember when she started losing the use of her arms she said she >>>>> didn’t know what she would do if she couldn’t do her sewing and etc. >>>>> though I never met her I felt I knew her all my life. More later—— >>>>> >>>>> 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 13, 2018, at 9:52 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >>>>>> >>>>>> Jeanie, And I love you to, but when you say " Love you so very much" Do >>>>>> you mean like hugging me so much that your going to crush me until my >>>>>> ribs crumble? >>>>>> >>>>>> Ah yet another opportunity to let me say again... >>>>>> >>>>>> 18's, >>>>>> >>>>>> Marty >>>>>> >>>>>>> On Fri, Jul 13, 2018 at 9:16 AM, 'Jeanie' via CMLHope >>>>>>> <cmlhope@googlegroups.com> wrote: >>>>>>> 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. >>>>>>>>>> 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