Beautiful!!!!

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.  Has anyone else had a 
>> problem like this?
>> -- 
>> -- 
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