I think he is on 150 micrograms.
Joyce in Southern Illinois
> On Jul 17, 2018, at 2:39 PM, Marty Gartenberg <[email protected]> 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 <[email protected]
> <mailto:[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]
>> <mailto:[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]
>> <mailto:[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] <mailto:[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]
>>> <mailto:[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] <mailto:[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]
>>>> <mailto:[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] <mailto:[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]
>>>>> <mailto:[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]
>>>>>> <mailto:[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 <http://cmlhope.com/>
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>>>>>>
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>>>>>
>>>>>
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>>>>
>>>>
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>>>
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