Re: [CMLHope] Info update

2016-02-18 Thread Marty Gartenberg
Dear Beth,

About your friend who has GVHD, do you know if she or is it he had a T cell
depleted BMT? in my time only one hospital was doing T cell depleted BMT's.
As it ended up most transplanted patients at that hospital had it done
because there would be no GVHD but a lot of them relapsed, I would say over
half relapsed.

It was then discovered that if the donor would give the patients I believe
were Lymphocytes they would unreaps or something like that.

That was in my time and I asked a few Oncologist' what would they have
done, but at the time there was no conclusive evidence of which way to go,
but no GVHD. There were some other problems at that hospital so I decided
to go to another transplant center after asking one of the people that I
helped who did have a T cell depleted transplant and he did relapse so he
was given his donors lymphocytes and he is still fine today with no GVHD.

This is just a piece of information that you may give your
Oncologist. GVHD sucks and I have it to this very day but it really beats
the alternative now doesn't it?

18's,

Marty

On Thu, Feb 18, 2016 at 4:10 PM, bkbarney via CMLHope <
cmlhope@googlegroups.com> wrote:

> Dear Susan,
>
> Thank you for the kind words. As I just read Jeanie's post...and Marty's,
> and yours and Jon's, .etc...I feel blessed that we all have access to
> good docs, who seem to care a lot..even if they cannot always solve or
> figure out what the problems are..(Jeanie's pain).and that we have each
> other...companions on this journey,I am beyond grateful for each one of
> you...
>
> Jeanie, I so hope they can figure out where this pain is coming from and
> help ease it for you... It's miserable to always walk in pain like
> that...although you have a great attitude as always.
>
> Jon, wow...no blast phase...I am relieved for you and happy that your
> counts are coming down... seems like you are well watched over...hope you
> are on your feet and feeling better very soon!!!
>
> and Susan, so glad you are smothered in love and valentines by your
> sweetie...at the end of the day...somehow, I think that is what sustains
> us... love, and hope for another day of loving...of hoping for a cure, or
> just a "good" day...I think everyone here knows what that means...
>
> and Marty...I wish you respite from the enormous trials you have been
> going through...that you continue to send positive uplifting emails  that
> make us hold hope...well, it's  awe inspiring..
>
> my best friend is now two  and a half  years out post bone marrow
> transplant...she still struggles mightily with graft verses host...but has
> a resiliency and endurance that always astounds, inspires and humbles
> mestill..she has her good days and her "darker days" as she calls
> them...she just wrote a lovely piece on Lent..wish I could find a way
> to share it with you..it's on a private bloganyway,it was about the
> darkness and the light, choosing to go without something for 40 days...and
> then  return to it...with deeper appreciationso I am focusing on what I
> do have, rather than what I don't
>
> as for my check inthe New Year has been a hard one for  me thus far,
> filled with insurance challenges, actually nightmares..but at least I have
> insurance..so my BCR-ABL was pushed back three weeks so I have never gone
> so long without..but will do one in March. Back on sprycel for 7 weeks now.
> more muscle fatigue and weakness than ever before...
>
> I had to go on steroids for my back, and thus try the CPK lowering steroid
> protocol as long as I had to start them anyway..but went off after ten days
> because of side effects to serious to continue.so CPK remails very
> high, muscle wasting, and the desire to be active and feel stronger, gets
> overshadowed by the pain and fatigue in my body...so, that's the
> truthbut...
>
>  my goals, which are hard when one feels so shitty,  are to exercise more,
> eat super healthy, lose some weight, say my prayers, and try and find ways
> to help myself feel better.staying positivejust staying positive
> and hopefully will see Dr. Druker in the near future.
>
>
> Big hug and love to all of you reading out there..whether you post or
> notI hope you feel the community's  love and
> support.
>
> 18's Beth
>
> .
>
>
>
>
>
> -Original Message-
> From: 'Icandoallttc' via CMLHope 
> To: cmlhope 
> Sent: Mon, Feb 15, 2016 3:14 pm
> Subject: Re: [CMLHope] Info update
>
> Hi Susan and all,
> Good to hear your uplifting voice of hope and love.  I had my annual
> checkup with my PCD today.  Every thing is pretty much the same.  I Had
> blood dra

Re: [CMLHope] Info update

2016-02-18 Thread bkbarney via CMLHope
Dear Susan,


Thank you for the kind words. As I just read Jeanie's post...and Marty's, and 
yours and Jon's, .etc...I feel blessed that we all have access to good 
docs, who seem to care a lot..even if they cannot always solve or figure out 
what the problems are..(Jeanie's pain).and that we have each other...companions 
on this journey,I am beyond grateful for each one of you...


Jeanie, I so hope they can figure out where this pain is coming from and help 
ease it for you... It's miserable to always walk in pain like that...although 
you have a great attitude as always.


Jon, wow...no blast phase...I am relieved for you and happy that your counts 
are coming down... seems like you are well watched over...hope you are on your 
feet and feeling better very soon!!!


and Susan, so glad you are smothered in love and valentines by your 
sweetie...at the end of the day...somehow, I think that is what sustains us... 
love, and hope for another day of loving...of hoping for a cure, or just a 
"good" day...I think everyone here knows what that means...


and Marty...I wish you respite from the enormous trials you have been going 
through...that you continue to send positive uplifting emails  that make us 
hold hope...well, it's  awe inspiring..


my best friend is now two  and a half  years out post bone marrow 
transplant...she still struggles mightily with graft verses host...but has a 
resiliency and endurance that always astounds, inspires and humbles 
mestill..she has her good days and her "darker days" as she calls 
them...she just wrote a lovely piece on Lent..wish I could find a way to 
share it with you..it's on a private bloganyway,it was about the darkness 
and the light, choosing to go without something for 40 days...and then  return 
to it...with deeper appreciationso I am focusing on what I do have, rather 
than what I don't


as for my check inthe New Year has been a hard one for  me thus far, filled 
with insurance challenges, actually nightmares..but at least I have 
insurance..so my BCR-ABL was pushed back three weeks so I have never gone so 
long without..but will do one in March. Back on sprycel for 7 weeks now. more 
muscle fatigue and weakness than ever before...


I had to go on steroids for my back, and thus try the CPK lowering steroid 
protocol as long as I had to start them anyway..but went off after ten days 
because of side effects to serious to continue.so CPK remails very high, 
muscle wasting, and the desire to be active and feel stronger, gets 
overshadowed by the pain and fatigue in my body...so, that's the 
truthbut...


 my goals, which are hard when one feels so shitty,  are to exercise more, eat 
super healthy, lose some weight, say my prayers, and try and find ways to help 
myself feel better.staying positivejust staying positive and hopefully 
will see Dr. Druker in the near future.




Big hug and love to all of you reading out there..whether you post or notI 
hope you feel the community's  love and 
support. 


18's Beth


.










-Original Message-
From: 'Icandoallttc' via CMLHope 
To: cmlhope 
Sent: Mon, Feb 15, 2016 3:14 pm
Subject: Re: [CMLHope] Info update



Hi Susan and all,
Good to hear your uplifting voice of hope and love.  I had my annual checkup 
with my PCD today.  Every thing is pretty much the same.  I Had blood drawn and 
will get the results tomorrow.  Also they found some nodes on my lungs a few 
months ago so I will do a chest X-ray tomorrow. I have no trouble breathing so 
I don't think anything is wrong. 
Pain is still bad but I'm hoping they can find the cause soon. 
I hope every one is good tonight. 

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center


On Feb 13, 2016, at 3:27 PM, 'Susan Zimmerman' via CMLHope 
 wrote:



Dear Beth and Marty,


Sweet Beth is one of my inspirations, in case you didn't know.  I pray all is 
well with you?!  We need an update.  Happy Valentine's Day.


Marty, I sure hope your dire circumstances have improved this week, even just a 
tiny little bit.  A tiny bit is to rejoice over!  I love all you guys so much, 
and we truly are family.  Happy Valentine's Day and get your wife something 
special.


Jeanie, I sure do hope your side pain is better, too.  Even just a tiny bit!  
That V.Day will lift your spirits and that you know you are loved!


Jon, I'm expecting good results for your next testing.  I've gotta go soon 
myself to find out if my numbers are staying low.  Happy Vday!


The rest that we haven't heard from latelykeep in touch with us!  I don't 
read posts every day, but will eventually!


So far I've gotten a birthday balloon, 

Re: [CMLHope] Info update

2016-02-15 Thread 'Icandoallttc' via CMLHope
Hi Susan and all,
Good to hear your uplifting voice of hope and love.  I had my annual checkup 
with my PCD today.  Every thing is pretty much the same.  I Had blood drawn and 
will get the results tomorrow.  Also they found some nodes on my lungs a few 
months ago so I will do a chest X-ray tomorrow. I have no trouble breathing so 
I don't think anything is wrong. 
Pain is still bad but I'm hoping they can find the cause soon. 
I hope every one is good tonight. 

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 13, 2016, at 3:27 PM, 'Susan Zimmerman' via CMLHope 
>  wrote:
> 
> Dear Beth and Marty,
> 
> Sweet Beth is one of my inspirations, in case you didn't know.  I pray all is 
> well with you?!  We need an update.  Happy Valentine's Day.
> 
> Marty, I sure hope your dire circumstances have improved this week, even just 
> a tiny little bit.  A tiny bit is to rejoice over!  I love all you guys so 
> much, and we truly are family.  Happy Valentine's Day and get your wife 
> something special.
> 
> Jeanie, I sure do hope your side pain is better, too.  Even just a tiny bit!  
> That V.Day will lift your spirits and that you know you are loved!
> 
> Jon, I'm expecting good results for your next testing.  I've gotta go soon 
> myself to find out if my numbers are staying low.  Happy Vday!
> 
> The rest that we haven't heard from latelykeep in touch with us!  I don't 
> read posts every day, but will eventually!
> 
> So far I've gotten a birthday balloon, a big neat card, and many kisses and 
> vows of love from my hubby.  Oh, also flowers!  We've been celebrating for 
> two weeks.  e-cards are so easy to send, and I have fun doing it, so he's 
> gotten candy twice and a physical card, and many e-mailed cards!  He knows 
> better than to buy me candy, it's poison for a diabetic.  I eat dark 
> chocolate anyway, lol.
> 
> Blessings and 18's for life of course, Marty,
> 
> Susan F. Zimmerman
> "Look among the nations and watch; be utterly astounded!  For I will work a 
> work in your days which you would not believe, though it were told you."  
> Hab. 1:5
> 
> 
> -Original Message-
> From: Marty Gartenberg 
> To: cmlhope 
> Sent: Fri, Feb 12, 2016 9:29 pm
> Subject: Re: [CMLHope] Info update
> 
> Susan, Susan what am I to do with you? you are so sweet and for this. I have 
> no doubt that everything will turn out well for you and your family just as 
> is has been doing for me, Shelly and our children. I'm sure that you can 
> imagine everything that I have been through and also so have you.
> 
> I also see that you are using 18"s as you end all of your posts. Do you know 
> why? Because we and a lot of others share something. Life
> 
> 18's again.
> 
> Marty
> 
> 
> 
> 
>> On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope 
>>  wrote:
>> Dear Marty,
>> 
>> So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all 
>> rooting for you to beat this problem with immunity ASAP.  You are not 
>> complaining, just stating a reason for us to pray for you!  If we don't know 
>> about it we can't zero in on it in intercessory prayer.  You've got my 
>> prayers and I know those of everyone on here who prays to the most High God..
>> 
>> Two trips to Chicago have so far found nothing really wrong with my blood 
>> that would cause the stroke.  This time they know it's from the bosulif, but 
>> waiting for results from the MRA and MRI that also happened.
>> 
>> So I'm enjoying time off the TKI, and living life to the fullest every daY.  
>> EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
>> sweetie, know that you can treat yourself better than usual for the 
>> occasion!  (Bubble bath, massage, favorite meal, etc. just for you).  The 
>> rest of ya try to take good care of your significant other!  (Of course 
>> don't fall for the media's need to spend lots of money...lol)
>> 
>> Heartfelt love and 18's,
>> 
>> Susan F. Zimmerman
>> 
>> 
>> -Original Message-
>> From: Marty Gartenberg 
>> To: cmlhope 
>> Sent: Fri, Feb 12, 2016 4:04 pm
>> Subject: Re: [CMLHope] Info update
>> 
>> Ok, let's see what happens at your next blood test.
>> I just had one this morning and sorry to say my WBC was only 1.87 so that 
>> puts me having a problem wit

Re: [CMLHope] Info update

2016-02-13 Thread Marty Gartenberg
Hi John and of course each and every one of you.

John, I went to the hospital yesterday morning for my usual blood work and
also saw my infectious disease doctor.

Since my CMV virus has been dropping off he decided to drop my anti virus
 medicine to half the amount and then hopefully these terrible mouth sores
will become better.

Other then that my Creatnine level is doing very well, in fact it is better

On Sat, Feb 13, 2016 at 7:12 AM, John Barrons  wrote:

> Hi Jeanie: my ponatinib was increased in the hospital to get the wbc count
> down. My oncologist did not think I had gone into Blast phase and he was
> right. He did not do a pcr test, but the counts came back down to my normal
> fairly quickly. Thanks for asking. JohN B
>
> Sent from my iPad
>
> On Feb 12, 2016, at 5:24 PM, 'Icandoallttc' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> I hope every thing will be good John.  Did they treat your CML while you
> were in the hospital?  Did they increase your ponatinib to get the counts
> down?
> Do they do PCR test on your blood?
> I got a bill from Moffitt and it was over $2000. I found out it is the PCR
> test that's so expensive.  They never gave me the results from it.
> My insurance paid most of the bill.
> Blessings.
>
>
> My Motto: Faith and Pills❤️
> With 💗Jeanie 🐟🐟18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
>
> On Feb 12, 2016, at 4:04 PM, Marty Gartenberg  wrote:
>
> Ok, let's see what happens at your next blood test.
> I just had one this morning and sorry to say my WBC was only 1.87 so that
> puts me having a problem with immunity but I know that it is coming from
> the CMV virus that I am having so I have to be very careful until the
> reduced medication starts to work again. In the mean time I have gotten
> some terrible mouth sores just like I got when I had the bone marrow
> transplant caused by all of the Chemo and radiation. Something that I will
> never forget. Believe it or not that was by far the worst part of it.
> However I just try not to complain about it. And do you know why? I'm still
> alive today.
>
> And now you know what 18's stands for... Life!
>
> So I bid you many more 18's.
>
> Marty
>
> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>
>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next
>> have a cbc a week this Tuesday. John
>>
>> Sent from my iPad
>>
>> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
>>
>> Hi John,
>>
>> What are your WBC now? I know a man who lives in Canada a very long time
>> ago actually more then 35 years ago and he never took any TKI's but he did
>> take something and it did "burn out his Leukemia" but unfortunately he has
>> to have blood transfusions I think every two weeks. He is the longest
>> surviving person in this world.
>>
>> I probably am in there as well logging in going on 27 years after having
>> a bone marrow transplant.
>>
>> Different people react to different things and sometimes some of them
>> defies the logic of these things that are just meant to be. Hey you seem to
>> be one of them👍
>> Good luck to you!
>>
>> Remember what 18's stands for.
>>
>> Marty
>>
>> On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
>>
>>> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill
>>> a week to keep  the counts low. the counts do fluctuate from time to time.
>>> There does not seem to an answer for the white blood cells to have
>>> increased so suddenly. My oncologist did not think it was a change to blast
>>> phase. So I go once a week or once every two weeks to check them. John B.
>>>
>>>
>>> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg <
>>> wa2...@gmail.com> wrote:
>>>
>>>
>>> Hi John,
>>>
>>> First let me say hello to your wife, and believe me I personally know
>>> what she has been going through.
>>>
>>> Now what I can't understand why your white blood count went over
>>> 100,000. And what pill have you been taking? Usually you need to be taking
>>> more then 1 pill and that should be every day. So John I am really puzzled.
>>>
>>> I wish you as well as your wife the very best, because of mainly what
>>> you wrote. Yes, life is good.
>>>
>>> If you have been reading any of my posts I always end them with 18's
>>> which is a symbol for life.
>>>
>>> 18's,
>>>
>>> Marty
>>>
>>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>>>
>>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I
>>> was not feeling very well. My oncologist said if I felt worse go to
>>> emergency, which I did on Dec 26. I had pneumonia and as I result my heart
>>> was having trouble. In addition, my white blood count went over 100,000. I
>>> was in hospital until Jan 16 when I was transferred to a rehab centre to
>>> gain back some strength. I arrived back at home last Saturday, so glad to
>>> be home I can't begin to say. All is well

Re: [CMLHope] Info update

2016-02-13 Thread 'Susan Zimmerman' via CMLHope
Dear Beth and Marty,


Sweet Beth is one of my inspirations, in case you didn't know.  I pray all is 
well with you?!  We need an update.  Happy Valentine's Day.


Marty, I sure hope your dire circumstances have improved this week, even just a 
tiny little bit.  A tiny bit is to rejoice over!  I love all you guys so much, 
and we truly are family.  Happy Valentine's Day and get your wife something 
special.


Jeanie, I sure do hope your side pain is better, too.  Even just a tiny bit!  
That V.Day will lift your spirits and that you know you are loved!


Jon, I'm expecting good results for your next testing.  I've gotta go soon 
myself to find out if my numbers are staying low.  Happy Vday!


The rest that we haven't heard from latelykeep in touch with us!  I don't 
read posts every day, but will eventually!


So far I've gotten a birthday balloon, a big neat card, and many kisses and 
vows of love from my hubby.  Oh, also flowers!  We've been celebrating for two 
weeks.  e-cards are so easy to send, and I have fun doing it, so he's gotten 
candy twice and a physical card, and many e-mailed cards!  He knows better than 
to buy me candy, it's poison for a diabetic.  I eat dark chocolate anyway, lol.


Blessings and 18's for life of course, Marty,


Susan F. Zimmerman
"Look among the nations and watch; be utterly astounded!  For I will work a 
work in your days which you would not believe, though it were told you."  Hab. 
1:5



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 9:29 pm
Subject: Re: [CMLHope] Info update



Susan, Susan what am I to do with you? you are so sweet and for this. I have no 
doubt that everything will turn out well for you and your family just as is has 
been doing for me, Shelly and our children. I'm sure that you can imagine 
everything that I have been through and also so have you.


I also see that you are using 18"s as you end all of your posts. Do you know 
why? Because we and a lot of others share something. Life


18's again.


Marty









On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope 
 wrote:

Dear Marty,


So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all rooting 
for you to beat this problem with immunity ASAP.  You are not complaining, just 
stating a reason for us to pray for you!  If we don't know about it we can't 
zero in on it in intercessory prayer.  You've got my prayers and I know those 
of everyone on here who prays to the most High God..


Two trips to Chicago have so far found nothing really wrong with my blood that 
would cause the stroke.  This time they know it's from the bosulif, but waiting 
for results from the MRA and MRI that also happened.


So I'm enjoying time off the TKI, and living life to the fullest every daY.  
EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
sweetie, know that you can treat yourself better than usual for the occasion!  
(Bubble bath, massage, favorite meal, etc. just for you).  The rest of ya try 
to take good care of your significant other!  (Of course don't fall for the 
media's need to spend lots of money...lol)


Heartfelt love and 18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 4:04 pm
Subject: Re: [CMLHope] Info update




Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that puts 
me having a problem with immunity but I know that it is coming from the CMV 
virus that I am having so I have to be very careful until the reduced 
medication starts to work again. In the mean time I have gotten some terrible 
mouth sores just like I got when I had the bone marrow transplant caused by all 
of the Chemo and radiation. Something that I will never forget. Believe it or 
not that was by far the worst part of it. However I just try not to complain 
about it. And do you know why? I'm still alive today.


And now you know what 18's stands for... Life!


So I bid you many more 18's.


Marty   



On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:


Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad


On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:




Hi John,


What are your WBC now? I know a man who lives in Canada a very long time ago 
actually more then 35 years ago and he never took any TKI's but he did take 
something and it did "burn out his Leukemia" but unfortunately he has to have 
blood transfusions I think every two weeks. He is the longest surviving person 
in this world.


I probably am in there as well logging in going on 27 years after having a bone 
marrow transplant. 


Different people react to different thi

Re: [CMLHope] Info update

2016-02-13 Thread John Barrons
Hi Jeanie: my ponatinib was increased in the hospital to get the wbc count 
down. My oncologist did not think I had gone into Blast phase and he was right. 
He did not do a pcr test, but the counts came back down to my normal fairly 
quickly. Thanks for asking. JohN B

Sent from my iPad

> On Feb 12, 2016, at 5:24 PM, 'Icandoallttc' via CMLHope 
>  wrote:
> 
> I hope every thing will be good John.  Did they treat your CML while you were 
> in the hospital?  Did they increase your ponatinib to get the counts down?
> Do they do PCR test on your blood?
> I got a bill from Moffitt and it was over $2000. I found out it is the PCR 
> test that's so expensive.  They never gave me the results from it. 
> My insurance paid most of the bill.  
> Blessings. 
> 
> 
> My Motto: Faith and Pills❤️
> With 💗Jeanie 🐟🐟18,s Chi
> Dx 1/2004. CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
> 
>> On Feb 12, 2016, at 4:04 PM, Marty Gartenberg  wrote:
>> 
>> Ok, let's see what happens at your next blood test.
>> I just had one this morning and sorry to say my WBC was only 1.87 so that 
>> puts me having a problem with immunity but I know that it is coming from the 
>> CMV virus that I am having so I have to be very careful until the reduced 
>> medication starts to work again. In the mean time I have gotten some 
>> terrible mouth sores just like I got when I had the bone marrow transplant 
>> caused by all of the Chemo and radiation. Something that I will never 
>> forget. Believe it or not that was by far the worst part of it. However I 
>> just try not to complain about it. And do you know why? I'm still alive 
>> today.
>> 
>> And now you know what 18's stands for... Life!
>> 
>> So I bid you many more 18's.
>> 
>> Marty   
>> 
>>> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next 
>>> have a cbc a week this Tuesday. John
>>> 
>>> Sent from my iPad
>>> 
 On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
 
 Hi John,
 
 What are your WBC now? I know a man who lives in Canada a very long time 
 ago actually more then 35 years ago and he never took any TKI's but he did 
 take something and it did "burn out his Leukemia" but unfortunately he has 
 to have blood transfusions I think every two weeks. He is the longest 
 surviving person in this world.
 
 I probably am in there as well logging in going on 27 years after having a 
 bone marrow transplant.
 
 Different people react to different things and sometimes some of them 
 defies the logic of these things that are just meant to be. Hey you seem 
 to be one of them👍
 Good luck to you!
 
 Remember what 18's stands for.
 
 Marty  
 
> On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill 
> a week to keep  the counts low. the counts do fluctuate from time to 
> time. There does not seem to an answer for the white blood cells to have 
> increased so suddenly. My oncologist did not think it was a change to 
> blast phase. So I go once a week or once every two weeks to check them. 
> John B.
> 
> 
> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg 
>  wrote:
> 
> 
> Hi John,
> 
> First let me say hello to your wife, and believe me I personally know 
> what she has been going through.
> 
> Now what I can't understand why your white blood count went over 100,000. 
> And what pill have you been taking? Usually you need to be taking more 
> then 1 pill and that should be every day. So John I am really puzzled.
> 
> I wish you as well as your wife the very best, because of mainly what you 
> wrote. Yes, life is good.
> 
> If you have been reading any of my posts I always end them with 18's 
> which is a symbol for life.
> 
> 18's,
> 
> Marty
> 
> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I 
> was not feeling very well. My oncologist said if I felt worse go to 
> emergency, which I did on Dec 26. I had pneumonia and as I result my 
> heart was having trouble. In addition, my white blood count went over 
> 100,000. I was in hospital until Jan 16 when I was transferred to a rehab 
> centre to gain back some strength. I arrived back at home last Saturday, 
> so glad to be home I can't begin to say. All is well as far as the things 
> that were wrong. Mind you I have to gain a lot of weight back. The 
> leukemia is back to normal and I am on 1 pill per week. That was along 
> time to be away and I was difficult for my wife also. Life is good John B
> 
> Sent from my iPad
> 
> --
>>

Re: [CMLHope] Info update

2016-02-13 Thread Marty Gartenberg
*DON'T FORGET, WE ARE ALL PART OF THIS.*

*EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
(MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.*

*WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.*

*EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
SUCCESSFUL OUTCOME...*

*FOCUS...*

*Oh, I almost forgot, Happy Valentines Day to each and every one of you😍 *

 18's

Marty

On Fri, Feb 12, 2016 at 8:19 PM, bkbarney via CMLHope <
cmlhope@googlegroups.com> wrote:

> Dear Marty and Susan,
>
> Just a note to thank you for your posts, and for keeping us informed so we
> can stay connected, and keep you both in our hearts and prayers. You both
> have been through so muchyet your attitudes and spirits really are
> remarkableI think your faiths seem to play an important role.
> Thanks for being inspirations to us...
>
> happy V day to all...stay warm..where ever you are...
>
>
> warm hug18's Beth
>
>
> -Original Message-
> From: Marty Gartenberg 
> To: cmlhope 
> Sent: Fri, Feb 12, 2016 8:29 pm
> Subject: Re: [CMLHope] Info update
>
> Susan, Susan what am I to do with you? you are so sweet and for this. I
> have no doubt that everything will turn out well for you and your family
> just as is has been doing for me, Shelly and our children. I'm sure that
> you can imagine everything that I have been through and also so have you.
>
> I also see that you are using 18"s as you end all of your posts. Do you
> know why? Because we and a lot of others share something. Life
>
> 18's again.
>
> Marty
>
>
>
>
> On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> Dear Marty,
>>
>> So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all
>> rooting for you to beat this problem with immunity ASAP.  You are not
>> complaining, just stating a reason for us to pray for you!  If we don't
>> know about it we can't zero in on it in intercessory prayer.  You've got my
>> prayers and I know those of everyone on here who prays to the most High
>> God..
>>
>> Two trips to Chicago have so far found nothing really wrong with my blood
>> that would cause the stroke.  This time they know it's from the bosulif,
>> but waiting for results from the MRA and MRI that also happened.
>>
>> So I'm enjoying time off the TKI, and living life to the fullest every
>> daY.  EVERYONE have a wonderful Valentine weekend, please.  If ya don't
>> have a sweetie, know that you can treat yourself better than usual for the
>> occasion!  (Bubble bath, massage, favorite meal, etc. just for you).  The
>> rest of ya try to take good care of your significant other!  (Of course
>> don't fall for the media's need to spend lots of money...lol)
>>
>> Heartfelt love and 18's,
>>
>> Susan F. Zimmerman
>>
>>
>> -Original Message-
>> From: Marty Gartenberg 
>> To: cmlhope 
>> Sent: Fri, Feb 12, 2016 4:04 pm
>> Subject: Re: [CMLHope] Info update
>>
>> Ok, let's see what happens at your next blood test.
>> I just had one this morning and sorry to say my WBC was only 1.87 so that
>> puts me having a problem with immunity but I know that it is coming from
>> the CMV virus that I am having so I have to be very careful until the
>> reduced medication starts to work again. In the mean time I have gotten
>> some terrible mouth sores just like I got when I had the bone marrow
>> transplant caused by all of the Chemo and radiation. Something that I will
>> never forget. Believe it or not that was by far the worst part of it.
>> However I just try not to complain about it. And do you know why? I'm still
>> alive today.
>>
>> And now you know what 18's stands for... Life!
>>
>> So I bid you many more 18's.
>>
>> Marty
>>
>> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>>
>>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next
>>> have a cbc a week this Tuesday. John
>>>
>>> Sent from my iPad
>&

Re: [CMLHope] Info update

2016-02-12 Thread bkbarney via CMLHope
Dear Marty and Susan,


Just a note to thank you for your posts, and for keeping us informed so we can 
stay connected, and keep you both in our hearts and prayers. You both have been 
through so muchyet your attitudes and spirits really are 
remarkableI think your faiths seem to play an important role. 
Thanks for being inspirations to us...


happy V day to all...stay warm..where ever you are...




warm hug18's Beth



-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 8:29 pm
Subject: Re: [CMLHope] Info update



Susan, Susan what am I to do with you? you are so sweet and for this. I have no 
doubt that everything will turn out well for you and your family just as is has 
been doing for me, Shelly and our children. I'm sure that you can imagine 
everything that I have been through and also so have you.


I also see that you are using 18"s as you end all of your posts. Do you know 
why? Because we and a lot of others share something. Life


18's again.


Marty









On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope 
 wrote:

Dear Marty,


So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all rooting 
for you to beat this problem with immunity ASAP.  You are not complaining, just 
stating a reason for us to pray for you!  If we don't know about it we can't 
zero in on it in intercessory prayer.  You've got my prayers and I know those 
of everyone on here who prays to the most High God..


Two trips to Chicago have so far found nothing really wrong with my blood that 
would cause the stroke.  This time they know it's from the bosulif, but waiting 
for results from the MRA and MRI that also happened.


So I'm enjoying time off the TKI, and living life to the fullest every daY.  
EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
sweetie, know that you can treat yourself better than usual for the occasion!  
(Bubble bath, massage, favorite meal, etc. just for you).  The rest of ya try 
to take good care of your significant other!  (Of course don't fall for the 
media's need to spend lots of money...lol)


Heartfelt love and 18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 4:04 pm
Subject: Re: [CMLHope] Info update




Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that puts 
me having a problem with immunity but I know that it is coming from the CMV 
virus that I am having so I have to be very careful until the reduced 
medication starts to work again. In the mean time I have gotten some terrible 
mouth sores just like I got when I had the bone marrow transplant caused by all 
of the Chemo and radiation. Something that I will never forget. Believe it or 
not that was by far the worst part of it. However I just try not to complain 
about it. And do you know why? I'm still alive today.


And now you know what 18's stands for... Life!


So I bid you many more 18's.


Marty   



On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:


Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad


On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:




Hi John,


What are your WBC now? I know a man who lives in Canada a very long time ago 
actually more then 35 years ago and he never took any TKI's but he did take 
something and it did "burn out his Leukemia" but unfortunately he has to have 
blood transfusions I think every two weeks. He is the longest surviving person 
in this world.


I probably am in there as well logging in going on 27 years after having a bone 
marrow transplant. 


Different people react to different things and sometimes some of them defies 
the logic of these things that are just meant to be. Hey you seem to be one of 
them👍
Good luck to you!


Remember what 18's stands for.


Marty  



On Thu, Feb 11, 2016 at 8:01 AM,   wrote:


I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a week 
to keep  the counts low. the counts do fluctuate from time to time. There does 
not seem to an answer for the white blood cells to have increased so suddenly. 
My oncologist did not think it was a change to blast phase. So I go once a week 
or once every two weeks to check them. John B. 
 



 
 
 
 On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg  
wrote:

  

 


Hi John,


First let me say hello to your wife, and believe me I personally know what she 
has been going through.


Now what I can't understand why your white blood count went over 100,000. And 
what pill have you been taking? Usually you need to be taking more then 1 pill 
and that should be every day. So John I am really puzzled. 


I wish you as well as your wife the 

Re: [CMLHope] Info update

2016-02-12 Thread Marty Gartenberg
Susan, Susan what am I to do with you? you are so sweet and for this. I
have no doubt that everything will turn out well for you and your family
just as is has been doing for me, Shelly and our children. I'm sure that
you can imagine everything that I have been through and also so have you.

I also see that you are using 18"s as you end all of your posts. Do you
know why? Because we and a lot of others share something. Life

18's again.

Marty




On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Dear Marty,
>
> So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all
> rooting for you to beat this problem with immunity ASAP.  You are not
> complaining, just stating a reason for us to pray for you!  If we don't
> know about it we can't zero in on it in intercessory prayer.  You've got my
> prayers and I know those of everyone on here who prays to the most High
> God..
>
> Two trips to Chicago have so far found nothing really wrong with my blood
> that would cause the stroke.  This time they know it's from the bosulif,
> but waiting for results from the MRA and MRI that also happened.
>
> So I'm enjoying time off the TKI, and living life to the fullest every
> daY.  EVERYONE have a wonderful Valentine weekend, please.  If ya don't
> have a sweetie, know that you can treat yourself better than usual for the
> occasion!  (Bubble bath, massage, favorite meal, etc. just for you).  The
> rest of ya try to take good care of your significant other!  (Of course
> don't fall for the media's need to spend lots of money...lol)
>
> Heartfelt love and 18's,
>
> Susan F. Zimmerman
>
>
> -Original Message-
> From: Marty Gartenberg 
> To: cmlhope 
> Sent: Fri, Feb 12, 2016 4:04 pm
> Subject: Re: [CMLHope] Info update
>
> Ok, let's see what happens at your next blood test.
> I just had one this morning and sorry to say my WBC was only 1.87 so that
> puts me having a problem with immunity but I know that it is coming from
> the CMV virus that I am having so I have to be very careful until the
> reduced medication starts to work again. In the mean time I have gotten
> some terrible mouth sores just like I got when I had the bone marrow
> transplant caused by all of the Chemo and radiation. Something that I will
> never forget. Believe it or not that was by far the worst part of it.
> However I just try not to complain about it. And do you know why? I'm still
> alive today.
>
> And now you know what 18's stands for... Life!
>
> So I bid you many more 18's.
>
> Marty
>
> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>
>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next
>> have a cbc a week this Tuesday. John
>>
>> Sent from my iPad
>>
>> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
>>
>> Hi John,
>>
>> What are your WBC now? I know a man who lives in Canada a very long time
>> ago actually more then 35 years ago and he never took any TKI's but he did
>> take something and it did "burn out his Leukemia" but unfortunately he has
>> to have blood transfusions I think every two weeks. He is the longest
>> surviving person in this world.
>>
>> I probably am in there as well logging in going on 27 years after having
>> a bone marrow transplant.
>>
>> Different people react to different things and sometimes some of them
>> defies the logic of these things that are just meant to be. Hey you seem to
>> be one of them👍
>> Good luck to you!
>>
>> Remember what 18's stands for.
>>
>> Marty
>>
>> On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
>>
>>> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill
>>> a week to keep  the counts low. the counts do fluctuate from time to time.
>>> There does not seem to an answer for the white blood cells to have
>>> increased so suddenly. My oncologist did not think it was a change to blast
>>> phase. So I go once a week or once every two weeks to check them. John B.
>>>
>>>
>>> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg <
>>> wa2...@gmail.com> wrote:
>>>
>>>
>>> Hi John,
>>>
>>> First let me say hello to your wife, and believe me I personally know
>>> what she has been going through.
>>>
>>> Now what I can't understand why your white blood count went over
>>> 100,000. And what pill have you been taking? Usually you need to be taking
>>> more then

Re: [CMLHope] Info update

2016-02-12 Thread 'Icandoallttc' via CMLHope
I hope every thing will be good John.  Did they treat your CML while you were 
in the hospital?  Did they increase your ponatinib to get the counts down?
Do they do PCR test on your blood?
I got a bill from Moffitt and it was over $2000. I found out it is the PCR test 
that's so expensive.  They never gave me the results from it. 
My insurance paid most of the bill.  
Blessings. 


My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 12, 2016, at 4:04 PM, Marty Gartenberg  wrote:
> 
> Ok, let's see what happens at your next blood test.
> I just had one this morning and sorry to say my WBC was only 1.87 so that 
> puts me having a problem with immunity but I know that it is coming from the 
> CMV virus that I am having so I have to be very careful until the reduced 
> medication starts to work again. In the mean time I have gotten some terrible 
> mouth sores just like I got when I had the bone marrow transplant caused by 
> all of the Chemo and radiation. Something that I will never forget. Believe 
> it or not that was by far the worst part of it. However I just try not to 
> complain about it. And do you know why? I'm still alive today.
> 
> And now you know what 18's stands for... Life!
> 
> So I bid you many more 18's.
> 
> Marty   
> 
>> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:
>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have 
>> a cbc a week this Tuesday. John
>> 
>> Sent from my iPad
>> 
>>> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
>>> 
>>> Hi John,
>>> 
>>> What are your WBC now? I know a man who lives in Canada a very long time 
>>> ago actually more then 35 years ago and he never took any TKI's but he did 
>>> take something and it did "burn out his Leukemia" but unfortunately he has 
>>> to have blood transfusions I think every two weeks. He is the longest 
>>> surviving person in this world.
>>> 
>>> I probably am in there as well logging in going on 27 years after having a 
>>> bone marrow transplant.
>>> 
>>> Different people react to different things and sometimes some of them 
>>> defies the logic of these things that are just meant to be. Hey you seem to 
>>> be one of them👍
>>> Good luck to you!
>>> 
>>> Remember what 18's stands for.
>>> 
>>> Marty  
>>> 
 On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
 I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a 
 week to keep  the counts low. the counts do fluctuate from time to time. 
 There does not seem to an answer for the white blood cells to have 
 increased so suddenly. My oncologist did not think it was a change to 
 blast phase. So I go once a week or once every two weeks to check them. 
 John B.
 
 
 On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg 
  wrote:
 
 
 Hi John,
 
 First let me say hello to your wife, and believe me I personally know what 
 she has been going through.
 
 Now what I can't understand why your white blood count went over 100,000. 
 And what pill have you been taking? Usually you need to be taking more 
 then 1 pill and that should be every day. So John I am really puzzled.
 
 I wish you as well as your wife the very best, because of mainly what you 
 wrote. Yes, life is good.
 
 If you have been reading any of my posts I always end them with 18's which 
 is a symbol for life.
 
 18's,
 
 Marty
 
 On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
 Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
 not feeling very well. My oncologist said if I felt worse go to emergency, 
 which I did on Dec 26. I had pneumonia and as I result my heart was having 
 trouble. In addition, my white blood count went over 100,000. I was in 
 hospital until Jan 16 when I was transferred to a rehab centre to gain 
 back some strength. I arrived back at home last Saturday, so glad to be 
 home I can't begin to say. All is well as far as the things that were 
 wrong. Mind you I have to gain a lot of weight back. The leukemia is back 
 to normal and I am on 1 pill per week. That was along time to be away and 
 I was difficult for my wife also. Life is good John B
 
 Sent from my iPad
 
 --
 --
 [CMLHope]
 A support group of http://cmlhope.com/
 -
 
 You received this message because you are subscribed to the Google Groups 
 "CMLHope" group.
 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
 ---
 You

Re: [CMLHope] Info update

2016-02-12 Thread 'Susan Zimmerman' via CMLHope
Dear Marty,


So sorry to hear about the mouth sores and low wbc.  UGH!!!  We are all rooting 
for you to beat this problem with immunity ASAP.  You are not complaining, just 
stating a reason for us to pray for you!  If we don't know about it we can't 
zero in on it in intercessory prayer.  You've got my prayers and I know those 
of everyone on here who prays to the most High God..


Two trips to Chicago have so far found nothing really wrong with my blood that 
would cause the stroke.  This time they know it's from the bosulif, but waiting 
for results from the MRA and MRI that also happened.


So I'm enjoying time off the TKI, and living life to the fullest every daY.  
EVERYONE have a wonderful Valentine weekend, please.  If ya don't have a 
sweetie, know that you can treat yourself better than usual for the occasion!  
(Bubble bath, massage, favorite meal, etc. just for you).  The rest of ya try 
to take good care of your significant other!  (Of course don't fall for the 
media's need to spend lots of money...lol)


Heartfelt love and 18's,



Susan F. Zimmerman




-Original Message-
From: Marty Gartenberg 
To: cmlhope 
Sent: Fri, Feb 12, 2016 4:04 pm
Subject: Re: [CMLHope] Info update



Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that puts 
me having a problem with immunity but I know that it is coming from the CMV 
virus that I am having so I have to be very careful until the reduced 
medication starts to work again. In the mean time I have gotten some terrible 
mouth sores just like I got when I had the bone marrow transplant caused by all 
of the Chemo and radiation. Something that I will never forget. Believe it or 
not that was by far the worst part of it. However I just try not to complain 
about it. And do you know why? I'm still alive today.


And now you know what 18's stands for... Life!


So I bid you many more 18's.


Marty   



On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:


Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad


On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:




Hi John,


What are your WBC now? I know a man who lives in Canada a very long time ago 
actually more then 35 years ago and he never took any TKI's but he did take 
something and it did "burn out his Leukemia" but unfortunately he has to have 
blood transfusions I think every two weeks. He is the longest surviving person 
in this world.


I probably am in there as well logging in going on 27 years after having a bone 
marrow transplant. 


Different people react to different things and sometimes some of them defies 
the logic of these things that are just meant to be. Hey you seem to be one of 
them👍
Good luck to you!


Remember what 18's stands for.


Marty  



On Thu, Feb 11, 2016 at 8:01 AM,   wrote:


I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a week 
to keep  the counts low. the counts do fluctuate from time to time. There does 
not seem to an answer for the white blood cells to have increased so suddenly. 
My oncologist did not think it was a change to blast phase. So I go once a week 
or once every two weeks to check them. John B. 
 



 
 
 
 On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg  
wrote:

  

 


Hi John,


First let me say hello to your wife, and believe me I personally know what she 
has been going through.


Now what I can't understand why your white blood count went over 100,000. And 
what pill have you been taking? Usually you need to be taking more then 1 pill 
and that should be every day. So John I am really puzzled. 


I wish you as well as your wife the very best, because of mainly what you 
wrote. Yes, life is good.


If you have been reading any of my posts I always end them with 18's which is a 
symbol for life. 


18's,


Marty



On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:

Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was not 
feeling very well. My oncologist said if I felt worse go to emergency, which I 
did on Dec 26. I had pneumonia and as I result my heart was having trouble. In 
addition, my white blood count went over 100,000. I was in hospital until Jan 
16 when I was transferred to a rehab centre to gain back some strength. I 
arrived back at home last Saturday, so glad to be home I can't begin to say. 
All is well as far as the things that were wrong. Mind you I have to gain a lot 
of weight back. The leukemia is back to normal and I am on 1 pill per week. 
That was along time to be away and I was difficult for my wife also. Life is 
good John B

Sent from my iPad

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

You received this message becau

Re: [CMLHope] Info update

2016-02-12 Thread Marty Gartenberg
Ok, let's see what happens at your next blood test.
I just had one this morning and sorry to say my WBC was only 1.87 so that
puts me having a problem with immunity but I know that it is coming from
the CMV virus that I am having so I have to be very careful until the
reduced medication starts to work again. In the mean time I have gotten
some terrible mouth sores just like I got when I had the bone marrow
transplant caused by all of the Chemo and radiation. Something that I will
never forget. Believe it or not that was by far the worst part of it.
However I just try not to complain about it. And do you know why? I'm still
alive today.

And now you know what 18's stands for... Life!

So I bid you many more 18's.

Marty

On Fri, Feb 12, 2016 at 5:49 AM, John Barrons  wrote:

> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next
> have a cbc a week this Tuesday. John
>
> Sent from my iPad
>
> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
>
> Hi John,
>
> What are your WBC now? I know a man who lives in Canada a very long time
> ago actually more then 35 years ago and he never took any TKI's but he did
> take something and it did "burn out his Leukemia" but unfortunately he has
> to have blood transfusions I think every two weeks. He is the longest
> surviving person in this world.
>
> I probably am in there as well logging in going on 27 years after having a
> bone marrow transplant.
>
> Different people react to different things and sometimes some of them
> defies the logic of these things that are just meant to be. Hey you seem to
> be one of them👍
> Good luck to you!
>
> Remember what 18's stands for.
>
> Marty
>
> On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
>
>> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill
>> a week to keep  the counts low. the counts do fluctuate from time to time.
>> There does not seem to an answer for the white blood cells to have
>> increased so suddenly. My oncologist did not think it was a change to blast
>> phase. So I go once a week or once every two weeks to check them. John B.
>>
>>
>> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg <
>> wa2...@gmail.com> wrote:
>>
>>
>> Hi John,
>>
>> First let me say hello to your wife, and believe me I personally know
>> what she has been going through.
>>
>> Now what I can't understand why your white blood count went over 100,000.
>> And what pill have you been taking? Usually you need to be taking more then
>> 1 pill and that should be every day. So John I am really puzzled.
>>
>> I wish you as well as your wife the very best, because of mainly what you
>> wrote. Yes, life is good.
>>
>> If you have been reading any of my posts I always end them with 18's
>> which is a symbol for life.
>>
>> 18's,
>>
>> Marty
>>
>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>>
>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I
>> was not feeling very well. My oncologist said if I felt worse go to
>> emergency, which I did on Dec 26. I had pneumonia and as I result my heart
>> was having trouble. In addition, my white blood count went over 100,000. I
>> was in hospital until Jan 16 when I was transferred to a rehab centre to
>> gain back some strength. I arrived back at home last Saturday, so glad to
>> be home I can't begin to say. All is well as far as the things that were
>> wrong. Mind you I have to gain a lot of weight back. The leukemia is back
>> to normal and I am on 1 pill per week. That was along time to be away and I
>> was difficult for my wife also. Life is good John B
>>
>> Sent from my iPad
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
>>
>> You received this message because you are subscribed to the Google Groups
>> "CMLHope" group.
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>> .
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>>
>>
>> --
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Re: [CMLHope] Info update

2016-02-12 Thread John Barrons
Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next have a 
cbc a week this Tuesday. John

Sent from my iPad

> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg  wrote:
> 
> Hi John,
> 
> What are your WBC now? I know a man who lives in Canada a very long time ago 
> actually more then 35 years ago and he never took any TKI's but he did take 
> something and it did "burn out his Leukemia" but unfortunately he has to have 
> blood transfusions I think every two weeks. He is the longest surviving 
> person in this world.
> 
> I probably am in there as well logging in going on 27 years after having a 
> bone marrow transplant.
> 
> Different people react to different things and sometimes some of them defies 
> the logic of these things that are just meant to be. Hey you seem to be one 
> of them👍
> Good luck to you!
> 
> Remember what 18's stands for.
> 
> Marty  
> 
>> On Thu, Feb 11, 2016 at 8:01 AM,  wrote:
>> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a 
>> week to keep  the counts low. the counts do fluctuate from time to time. 
>> There does not seem to an answer for the white blood cells to have increased 
>> so suddenly. My oncologist did not think it was a change to blast phase. So 
>> I go once a week or once every two weeks to check them. John B.
>> 
>> 
>> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg 
>>  wrote:
>> 
>> 
>> Hi John,
>> 
>> First let me say hello to your wife, and believe me I personally know what 
>> she has been going through.
>> 
>> Now what I can't understand why your white blood count went over 100,000. 
>> And what pill have you been taking? Usually you need to be taking more then 
>> 1 pill and that should be every day. So John I am really puzzled.
>> 
>> I wish you as well as your wife the very best, because of mainly what you 
>> wrote. Yes, life is good.
>> 
>> If you have been reading any of my posts I always end them with 18's which 
>> is a symbol for life.
>> 
>> 18's,
>> 
>> Marty
>> 
>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
>> not feeling very well. My oncologist said if I felt worse go to emergency, 
>> which I did on Dec 26. I had pneumonia and as I result my heart was having 
>> trouble. In addition, my white blood count went over 100,000. I was in 
>> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
>> some strength. I arrived back at home last Saturday, so glad to be home I 
>> can't begin to say. All is well as far as the things that were wrong. Mind 
>> you I have to gain a lot of weight back. The leukemia is back to normal and 
>> I am on 1 pill per week. That was along time to be away and I was difficult 
>> for my wife also. Life is good John B
>> 
>> Sent from my iPad
>> 
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
>> 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> 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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>> email to mailto:cmlhope%2bunsubscr...@googlegroups.com.
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>> 
>> -- 
>> -- 
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>> A support group of http://cmlhope.com/
>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
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>> 
>> -- 
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>> -
>>  
>> You received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Info update

2016-02-12 Thread Marty Gartenberg
Hi John,

What are your WBC now? I know a man who lives in Canada a very long time
ago actually more then 35 years ago and he never took any TKI's but he did
take something and it did "burn out his Leukemia" but unfortunately he has
to have blood transfusions I think every two weeks. He is the longest
surviving person in this world.

I probably am in there as well logging in going on 27 years after having a
bone marrow transplant.

Different people react to different things and sometimes some of them
defies the logic of these things that are just meant to be. Hey you seem to
be one of them👍
Good luck to you!

Remember what 18's stands for.

Marty

On Thu, Feb 11, 2016 at 8:01 AM,  wrote:

> I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a
> week to keep  the counts low. the counts do fluctuate from time to time.
> There does not seem to an answer for the white blood cells to have
> increased so suddenly. My oncologist did not think it was a change to blast
> phase. So I go once a week or once every two weeks to check them. John B.
>
>
> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg <
> wa2...@gmail.com> wrote:
>
>
> Hi John,
>
> First let me say hello to your wife, and believe me I personally know what
> she has been going through.
>
> Now what I can't understand why your white blood count went over 100,000.
> And what pill have you been taking? Usually you need to be taking more then
> 1 pill and that should be every day. So John I am really puzzled.
>
> I wish you as well as your wife the very best, because of mainly what you
> wrote. Yes, life is good.
>
> If you have been reading any of my posts I always end them with 18's which
> is a symbol for life.
>
> 18's,
>
> Marty
>
> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>
> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was
> not feeling very well. My oncologist said if I felt worse go to emergency,
> which I did on Dec 26. I had pneumonia and as I result my heart was having
> trouble. In addition, my white blood count went over 100,000. I was in
> hospital until Jan 16 when I was transferred to a rehab centre to gain back
> some strength. I arrived back at home last Saturday, so glad to be home I
> can't begin to say. All is well as far as the things that were wrong. Mind
> you I have to gain a lot of weight back. The leukemia is back to normal and
> I am on 1 pill per week. That was along time to be away and I was difficult
> for my wife also. Life is good John B
>
> Sent from my iPad
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com/
> -
>
> You received this message because you are subscribed to the Google Groups
> "CMLHope" group.
> 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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> email to mailto:cmlhope%2bunsubscr...@googlegroups.com
> .
> For more options, visit https://groups.google.com/d/optout.
>
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com/
> -
>
> You received this message because you are subscribed to the Google Groups
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>
>
> --
> --
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>
> You received this message because you are subscribed to the Google Groups
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Re: [CMLHope] Info update

2016-02-11 Thread bkbarney via CMLHope
So glad you are back home John! What an ordeal...I hope and pray that you get 
better and better and regain your strength and the weight you want to to feel 
healthy and strong. Glad the CML is under control...and still with one pill a 
week...wow! Take good care of yourself. I am, sure your sweet wife is happy to 
have you home again...


18's and my best,


Beth



-Original Message-
From: 'Icandoallttc' via CMLHope 
To: cmlhope 
Sent: Thu, Feb 11, 2016 2:23 pm
Subject: Re: [CMLHope] Info update

Hi John and I felt like something was wrong as we hadn't heard from you. I'm 
glad you are back home and cml is good.  
Have you had a pneumonia shot. I got mine many years ago and a booster when I 
was in the hospital a few years ago. 
I am still on 1 15 meg pill daily. 
You are the first person I ever met that only takes 1 pill weekly so that is 
why Marty was wondering.  
That was a long hospital stay.  Was that all for the pneumonia?
Give your wife good wishes from me and hang in there. 

My Motto: Faith and Pills❤️
With Jeanie 18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 7:45 PM, John Barrons  wrote:
> 
> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
> not feeling very well. My oncologist said if I felt worse go to emergency, 
> which I did on Dec 26. I had pneumonia and as I result my heart was having 
> trouble. In addition, my white blood count went over 100,000. I was in 
> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
> some strength. I arrived back at home last Saturday, so glad to be home I 
> can't begin to say. All is well as far as the things that were wrong. Mind 
> you I have to gain a lot of weight back. The leukemia is back to normal and I 
> am on 1 pill per week. That was along time to be away and I was difficult for 
> my wife also. Life is good John B
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
> 
> You received this message because you are subscribed to the Google Groups 
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
> To unsubscribe from this group, send email to 
> cmlhope-unsubscr...@googlegroups.com
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> --- 
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Re: [CMLHope] Info update

2016-02-11 Thread 'Icandoallttc' via CMLHope
Hi Marty. 
Just want to explain why WBC and platelets can rise quickly with cml.  
this has happened to me 3 times and it is because the tki you are taking quit 
working and you lose your remission.   It is caused by mutations.  I am on my 
4th tki now and running out of options if this one quits working. 
Wishing every one blessings.  

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 11:06 PM, Marty Gartenberg  wrote:
> 
> Hi John,
> 
> First let me say hello to your wife, and believe me I personally know what 
> she has been going through.
> 
> Now what I can't understand why your white blood count went over 100,000. And 
> what pill have you been taking? Usually you need to be taking more then 1 
> pill and that should be every day. So John I am really puzzled.
> 
> I wish you as well as your wife the very best, because of mainly what you 
> wrote. Yes, life is good.
> 
> If you have been reading any of my posts I always end them with 18's which is 
> a symbol for life.
> 
> 18's,
> 
> Marty
> 
>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:
>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
>> not feeling very well. My oncologist said if I felt worse go to emergency, 
>> which I did on Dec 26. I had pneumonia and as I result my heart was having 
>> trouble. In addition, my white blood count went over 100,000. I was in 
>> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
>> some strength. I arrived back at home last Saturday, so glad to be home I 
>> can't begin to say. All is well as far as the things that were wrong. Mind 
>> you I have to gain a lot of weight back. The leukemia is back to normal and 
>> I am on 1 pill per week. That was along time to be away and I was difficult 
>> for my wife also. Life is good John B
>> 
>> Sent from my iPad
>> 
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>> 
>> You received this message because you are subscribed to the Google Groups 
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
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>> cmlhope-unsubscr...@googlegroups.com
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> 
> -- 
> -- 
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Re: [CMLHope] Info update

2016-02-11 Thread 'Icandoallttc' via CMLHope
Hi John and I felt like something was wrong as we hadn't heard from you. I'm 
glad you are back home and cml is good.  
Have you had a pneumonia shot. I got mine many years ago and a booster when I 
was in the hospital a few years ago. 
I am still on 1 15 meg pill daily. 
You are the first person I ever met that only takes 1 pill weekly so that is 
why Marty was wondering.  
That was a long hospital stay.  Was that all for the pneumonia?
Give your wife good wishes from me and hang in there. 

My Motto: Faith and Pills❤️
With 💗Jeanie 🐟🐟18,s Chi
Dx 1/2004. CML Leukemia
Started Gleevec 2/2004
Started Tasigna  9/2009
Started Sprycel 11/2009
Started Ponatinib January 2015
Dr Balducci Moffitt Cancer Center

> On Feb 10, 2016, at 7:45 PM, John Barrons  wrote:
> 
> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was 
> not feeling very well. My oncologist said if I felt worse go to emergency, 
> which I did on Dec 26. I had pneumonia and as I result my heart was having 
> trouble. In addition, my white blood count went over 100,000. I was in 
> hospital until Jan 16 when I was transferred to a rehab centre to gain back 
> some strength. I arrived back at home last Saturday, so glad to be home I 
> can't begin to say. All is well as far as the things that were wrong. Mind 
> you I have to gain a lot of weight back. The leukemia is back to normal and I 
> am on 1 pill per week. That was along time to be away and I was difficult for 
> my wife also. Life is good John B
> 
> Sent from my iPad
> 
> -- 
> -- 
> [CMLHope]
> A support group of http://cmlhope.com
> -
> 
> You received this message because you are subscribed to the Google Groups 
> "CMLHope" group.
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Re: [CMLHope] Info update

2016-02-11 Thread jlbca
I am taking ponatinib like Jeanie in Tampa. I need to take only one pill a week 
to keep  the counts low. the counts do fluctuate from time to time. There does 
not seem to an answer for the white blood cells to have increased so suddenly. 
My oncologist did not think it was a change to blast phase. So I go once a week 
or once every two weeks to check them. John B.  

On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg 
 wrote:
 

 Hi John,
First let me say hello to your wife, and believe me I personally know what she 
has been going through.
Now what I can't understand why your white blood count went over 100,000. And 
what pill have you been taking? Usually you need to be taking more then 1 pill 
and that should be every day. So John I am really puzzled. 
I wish you as well as your wife the very best, because of mainly what you 
wrote. Yes, life is good.
If you have been reading any of my posts I always end them with 18's which is a 
symbol for life. 
18's,
Marty
On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:

Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was not 
feeling very well. My oncologist said if I felt worse go to emergency, which I 
did on Dec 26. I had pneumonia and as I result my heart was having trouble. In 
addition, my white blood count went over 100,000. I was in hospital until Jan 
16 when I was transferred to a rehab centre to gain back some strength. I 
arrived back at home last Saturday, so glad to be home I can't begin to say. 
All is well as far as the things that were wrong. Mind you I have to gain a lot 
of weight back. The leukemia is back to normal and I am on 1 pill per week. 
That was along time to be away and I was difficult for my wife also. Life is 
good John B

Sent from my iPad

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Re: [CMLHope] Info update

2016-02-10 Thread Marty Gartenberg
Hi John,

First let me say hello to your wife, and believe me I personally know what
she has been going through.

Now what I can't understand why your white blood count went over 100,000.
And what pill have you been taking? Usually you need to be taking more then
1 pill and that should be every day. So John I am really puzzled.

I wish you as well as your wife the very best, because of mainly what you
wrote. Yes, life is good.

If you have been reading any of my posts I always end them with 18's which
is a symbol for life.

18's,

Marty

On Wed, Feb 10, 2016 at 4:45 PM, John Barrons  wrote:

> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was
> not feeling very well. My oncologist said if I felt worse go to emergency,
> which I did on Dec 26. I had pneumonia and as I result my heart was having
> trouble. In addition, my white blood count went over 100,000. I was in
> hospital until Jan 16 when I was transferred to a rehab centre to gain back
> some strength. I arrived back at home last Saturday, so glad to be home I
> can't begin to say. All is well as far as the things that were wrong. Mind
> you I have to gain a lot of weight back. The leukemia is back to normal and
> I am on 1 pill per week. That was along time to be away and I was difficult
> for my wife also. Life is good John B
>
> Sent from my iPad
>
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[CMLHope] Info update

2016-02-10 Thread John Barrons
Hi Jeanie and to all: Well, where do I start. Before last Christmas, I was not 
feeling very well. My oncologist said if I felt worse go to emergency, which I 
did on Dec 26. I had pneumonia and as I result my heart was having trouble. In 
addition, my white blood count went over 100,000. I was in hospital until Jan 
16 when I was transferred to a rehab centre to gain back some strength. I 
arrived back at home last Saturday, so glad to be home I can't begin to say. 
All is well as far as the things that were wrong. Mind you I have to gain a lot 
of weight back. The leukemia is back to normal and I am on 1 pill per week. 
That was along time to be away and I was difficult for my wife also. Life is 
good John B

Sent from my iPad

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