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 
> <mailto: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 
>> <mailto: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 
>> <mailto: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 <mailto: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 
>>> <mailto: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 <mailto: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 
>>>> <mailto: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 <mailto: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 
>>>>> <mailto: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 
>>>>>> <mailto: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 <http://cmlhope.com/>
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>>>>> 
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> A support group of http://cmlhope.com <http://cmlhope.com/>
> -------------------------------------------------
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-- 
-- 
[CMLHope]
A support group of http://cmlhope.com
-------------------------------------------------

You received this message because you are subscribed to the Google Groups 
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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
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