My t3 and t4 were normal My Motto: Faith and Pills With Love Jeanie š free 18ās to Marty 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 2:22 PM, 'Jeanie' via CMLHope <[email protected]> > wrote: > > Thanks everyone. > I was worried about the meds. Did the meds get your tsh levels back to > normal. Mine was 13. ā¤ļø > > My Motto: > Faith and Pills > With Love > Jeanie > š 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 <[email protected]> >> 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 >> ā >> >>> On Wed, Jul 18, 2018 at 8:46 PM, bkbarney via CMLHope >>> <[email protected]> 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 <[email protected]> >>> To: cmlhope <[email protected]> >>> 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 >>> š 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 <[email protected]> wrote: >>> >>> Okay Jeanie, >>> >>> Since there is a lot to talk about I will do it between your lines. >>> >>> Hi >>> Thatās 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. š >>> >>> Iām 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 Millieās 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 didnāt >>> know what she would do if she couldnāt do her sewing and etc. >>> though I never met her I felt I knew her all my life. More laterāā >>> >>> 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 >>> <[email protected]> wrote: >>> Hi >>> Thatās 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? >>> Iām 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 Millieās 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 didnāt >>> know what she would do if she couldnāt do her sewing and etc. >>> though I never met her I felt I knew her all my life. More laterāā >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> Jeanie >>> š 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 <[email protected]> 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 >>> <[email protected]> wrote: >>> So true Marty >>> You arenāt even on tkiās and look what youāve been through. >>> Thank you for this email. >>> Love you so very much >>> Jeanie >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> Jeanie >>> š 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 <[email protected]> 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. šAnd if they feel that there is someone that can help as >>> well then get a second opinion.š 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 šadviceš. 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 āevery little >>> thingās gonna be alright.ā >>> ā¤ļø >>> 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 >>> <[email protected]> wrote: >>> Hi all >>> I had this problem when on Tasigna. My hmg dropped to 8. I argued with my >>> onc as I didnāt want someone elseās 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, >>> āevery little thingās gonna be alright.ā >>> ā¤ļø >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> Jeanie >>> š 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 <[email protected]> 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 <[email protected]> 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 [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> 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 [email protected]. >>> 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. >>> 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