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 >>>>>>> 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