Yes that’s the drug I was put on. I had noticed my hair was falling out and I was so sleepy and tired. My PCd took a blood test and found it. Did your hair fall out and if it did did it start coming back in? Thanks 18’s
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 18, 2018, at 7:55 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Thank you Joyce. > > 18's, > > Marty > >> On Wed, Jul 18, 2018 at 12:07 AM, Joyce Mesnarich <joy...@htc.net> wrote: >> I think he is on 150 micrograms. >> Joyce in Southern Illinois >> >> >>> On Jul 17, 2018, at 2:39 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 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