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 <[email protected]> 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 < > [email protected]> 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 <[email protected]> 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 < > [email protected]> 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 <[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 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 <[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. 👉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 < >>> [email protected]> 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 <[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 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