Thanks everyone. I was worried about the meds. Did the meds get your tsh levels back to normal. Mine was 13. ❤️
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 19, 2018, at 4:24 AM, sherri swanson <swanson.sherri...@gmail.com> > wrote: > > Hi Jeanie, > > I too take Levothroxine and have for about 25 or 30 years. The only thing I > was told was not to take it at the same time I take my Gleevec as the Gleevec > may decrease the level of Levothroxine may not work as well. But I have not > any issues and my Onc and GP are watching my blood levels. > > Hope everyone is well and enjoying the summer. Here is a photo from the > garden. > > > <image.png> > Sherri > > >> On Wed, Jul 18, 2018 at 8:46 PM, bkbarney via CMLHope >> <cmlhope@googlegroups.com> wrote: >> Hi Jeanie, >> >> Yep, have taken levothroxine since I was 30. Still on it without incident. >> >> Much love to all and 18's >> >> Beth >> >> >> -----Original Message----- >> From: 'Jeanie' via CMLHope <cmlhope@googlegroups.com> >> To: cmlhope <cmlhope@googlegroups.com> >> Sent: Tue, Jul 17, 2018 10:58 am >> Subject: Re: [CMLHope] Re: Sudden problem after twenty years. >> >> 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. 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