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