My t3 and t4 were normal
My Motto:
Faith and Pills
With Love
Jeanie
🐠free
18’s 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 <cmlhope@googlegroups.com> 
> wrote:
> 
> Thanks everyone. 
> I was worried about the meds.  Did the meds get your tsh levels back to 
> normal. Mine was 13. ❤️ 
> 
> 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?
>>> -- 
>>> -- 
>>> [CMLHope]
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