Jeanie, I think that your getting micrograms verses milligrams mixed up???
18's, Marty On Thu, Jul 19, 2018 at 2:29 PM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > > 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. >>>>>> >>>>> >>>>> >>>>> -- >>>>> -- >>>>> [CMLHope] >>>>> A support group of http://cmlhope.com 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