Re: [CMLHope] Re: Hello all

[ICANDOALLTTC via CMLHope]

Hi Skip and thanks so  much for that update!
You are truly a wonder!
This is my 12th year fighting CML so I'm just a baby hehe.
I also failed on all the tkis and was put on the newest: Ponatinib.
It is working good with little side effects.
There is only one other CML warrior on this drug: John.
Can we hear from you John?
I have had a bad side pain that the test don't show anything, but it is a  
bad pain so just have to treat it.
This pain started to get bad on Tasigna.
I had to have transfusions too on Tasigna and as you said, not a bad thing  
to go through just time consuming.
I am just thankful for each day and for our CML warriors who help us  
through the battle so we are not alone.
Have a wonderful Sunday!
Jeanie<3
 
 
In a message dated 4/17/2016 6:43:38 A.M. Eastern Daylight Time,  
shannonl.cam...@gmail.com writes:

Hi Skip  


Wow 38 yrs and such a journey you inspire me. I thought my 18yrs was long  
thanks for letting your story


thanks Shannon


On Sunday, April 17, 2016 at 5:40:25 AM UTC+10, skipd wrote:  
Well for those who may not know me, Name is Stewart Duffie  (Skip) I have 
had CML for about 38 years now.  When I first was diag in  1977 there was not 
much in the line of drugs, in fact there was none except  Myleran.  I 
survived with drug for 27 years, the Hem docs said to my GP  let his counts go 
up 
until over 100,000 (wbc) and then start myleran at 2mg  a day until it 
comes down to about 50% then one mg a day until it gets down  to about 30,000 
then 1/2 mg until about 20,000 then stop. Let the wbc drift  until until it 
gets back to over 100,000 then repeat all over again, we did  this every year 
until 27 years was up then my spleen started to act up.  Wheee there was a 
new drug would I go on the trial .. yeep Imatinib  would be my new drug It 
was not cheap, but we went on it until after about 2  years my Hem doc it was 
not working, beside he wanted me to try new drug  call Nilotinib, same 
company just stronger, so I took nilotnib until it  failed after some time. but 
we have a new drug coming down the line called  Dasatinib lets try that.  
That game so much plural Infusion they had to  quit.  
went back on Nilotinib.  I was in my 30th year with CML.  I  gues the doc 
thought it was a lost cause so he said will see you in six  months, well by 
that time my WBC. RBC, Plts, Neut, and ANC all we in the  critical stage, 
started getting blood and platelets twice week That is every  Tue received 
platetlets IV . platelets and  Fri IV  Red Blood  Cells.  The my Ferritin 
started going up until now it is over 9,000 it  should be 200 I get Desferol 
three 
time IV for it.  My Platelets are  low due to all these ddrugs over the 
years killing my bone marrow so I  cannot product plts.  Red goes down but not 
as fast. I see all of you  with CML that have such a hard time. Yet I am 
just coasting through this  feeling not to bad, have had some rought spots, but 
all in all I feel not to  bad I am getting up in years now, 
For those of you needing infusions it is not too bad, I have a PICC  Line 
in (see utube Purple PICC lines ) People donate blood and plts how  kind as I 
get single donor platelets 
Apheresis Platelets) which  take a 4 hours to give. other than cml I am 
healthy


Next I want to thank Marty and I candoallttc asking me to talk about my  
journy with CML .  Thanks so much for your interest.

On  Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:  
I did not know about google cmlhope.  I lost yahoo a  year or so ago and 
never could get back on.  I am now back on google  and thanks to Marty all 
seems right with the world.  I have had CML  for a long time and will go off 
and on the internet depends on where my  blood and platelets are.  all that 
means is how tired I am.  I  do read all the posts when I can.  I want to say 
hi to all the long  timers and the newbies to CML.  I think someone once 
called me an  urban legend, which I am not just old and wasting the takpayers 
money.  If anyone is interested  
I would give me stats, but I am sure most of you are tired of  it..
health to all.
Skipd







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[CMLHope] Re: Hello all

[Shannon L]

Hi Skip

Wow 38 yrs and such a journey you inspire me. I thought my 18yrs was long 
thanks for letting your story

thanks Shannon


On Sunday, April 17, 2016 at 5:40:25 AM UTC+10, skipd wrote:
>
> Well for those who may not know me, Name is Stewart Duffie (Skip) I have 
> had CML for about 38 years now.  When I first was diag in 1977 there was 
> not much in the line of drugs, in fact there was none except Myleran.  I 
> survived with drug for 27 years, the Hem docs said to my GP let his counts 
> go up until over 100,000 (wbc) and then start myleran at 2mg a day until it 
> comes down to about 50% then one mg a day until it gets down to about 
> 30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until 
> until it gets back to over 100,000 then repeat all over again, we did this 
> every year until 27 years was up then my spleen started to act up.  Wheee 
> there was a new drug would I go on the trial .. yeep Imatinib would be my 
> new drug It was not cheap, but we went on it until after about 2 years my 
> Hem doc it was not working, beside he wanted me to try new drug call 
> Nilotinib, same company just stronger, so I took nilotnib until it failed 
> after some time. but we have a new drug coming down the line called 
> Dasatinib lets try that.  That game so much plural Infusion they had to 
> quit.
> went back on Nilotinib.  I was in my 30th year with CML.  I gues the doc 
> thought it was a lost cause so he said will see you in six months, well by 
> that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage, 
> started getting blood and platelets twice week That is every Tue received 
> platetlets IV . platelets and  Fri IV  Red Blood Cells.  The my Ferritin 
> started going up until now it is over 9,000 it should be 200 I get Desferol 
> three time IV for it.  My Platelets are low due to all these ddrugs over 
> the years killing my bone marrow so I cannot product plts.  Red goes down 
> but not as fast. I see all of you with CML that have such a hard time. Yet 
> I am just coasting through this feeling not to bad, have had some rought 
> spots, but all in all I feel not to bad I am getting up in years now, 
> For those of you needing infusions it is not too bad, I have a PICC Line 
> in (see utube Purple PICC lines ) People donate blood and plts how  kind as 
> I get single donor platelets 
> Apheresis Platelets) which take a 4 hours to give. other than cml I am 
> healthy
>
> Next I want to thank Marty and I candoallttc asking me to talk about my 
> journy with CML .  Thanks so much for your interest.
>
> On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:
>>
>> I did not know about google cmlhope.  I lost yahoo a year or so ago and 
>> never could get back on.  I am now back on google and thanks to Marty all 
>> seems right with the world.  I have had CML for a long time and will go off 
>> and on the internet depends on where my blood and platelets are.  all that 
>> means is how tired I am.  I do read all the posts when I can.  I want to 
>> say hi to all the long timers and the newbies to CML.  I think someone once 
>> called me an urban legend, which I am not just old and wasting the 
>> takpayers money.  If anyone is interested
>> I would give me stats, but I am sure most of you are tired of it..
>> health to all.
>> Skipd
>>
>

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[CMLHope] Re: Hello all

[Richard H]

Thanks Skip.  This makes me a newbie with only 14 years of treatments.  My 
path seems too easy being able control my WBC under 30,000 and using 
Procrit to maintain Hemg.. between 8-11.  I agree with Marty that your CML 
record should be investigated and approved.  The world needs to know that 
CML can be controlled.  I do remember I was told that I had 5-10 years, 
later it was 20 years.  Now my ONC states I will die of other health health 
problems.  We can show other people this CML is controllable.

On Saturday, April 16, 2016 at 2:40:25 PM UTC-5, skipd wrote:
>
> Well for those who may not know me, Name is Stewart Duffie (Skip) I have 
> had CML for about 38 years now.  When I first was diag in 1977 there was 
> not much in the line of drugs, in fact there was none except Myleran.  I 
> survived with drug for 27 years, the Hem docs said to my GP let his counts 
> go up until over 100,000 (wbc) and then start myleran at 2mg a day until it 
> comes down to about 50% then one mg a day until it gets down to about 
> 30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until 
> until it gets back to over 100,000 then repeat all over again, we did this 
> every year until 27 years was up then my spleen started to act up.  Wheee 
> there was a new drug would I go on the trial .. yeep Imatinib would be my 
> new drug It was not cheap, but we went on it until after about 2 years my 
> Hem doc it was not working, beside he wanted me to try new drug call 
> Nilotinib, same company just stronger, so I took nilotnib until it failed 
> after some time. but we have a new drug coming down the line called 
> Dasatinib lets try that.  That game so much plural Infusion they had to 
> quit.
> went back on Nilotinib.  I was in my 30th year with CML.  I gues the doc 
> thought it was a lost cause so he said will see you in six months, well by 
> that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage, 
> started getting blood and platelets twice week That is every Tue received 
> platetlets IV . platelets and  Fri IV  Red Blood Cells.  The my Ferritin 
> started going up until now it is over 9,000 it should be 200 I get Desferol 
> three time IV for it.  My Platelets are low due to all these ddrugs over 
> the years killing my bone marrow so I cannot product plts.  Red goes down 
> but not as fast. I see all of you with CML that have such a hard time. Yet 
> I am just coasting through this feeling not to bad, have had some rought 
> spots, but all in all I feel not to bad I am getting up in years now, 
> For those of you needing infusions it is not too bad, I have a PICC Line 
> in (see utube Purple PICC lines ) People donate blood and plts how  kind as 
> I get single donor platelets 
> Apheresis Platelets) which take a 4 hours to give. other than cml I am 
> healthy
>
> Next I want to thank Marty and I candoallttc asking me to talk about my 
> journy with CML .  Thanks so much for your interest.
>
> On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:
>>
>> I did not know about google cmlhope.  I lost yahoo a year or so ago and 
>> never could get back on.  I am now back on google and thanks to Marty all 
>> seems right with the world.  I have had CML for a long time and will go off 
>> and on the internet depends on where my blood and platelets are.  all that 
>> means is how tired I am.  I do read all the posts when I can.  I want to 
>> say hi to all the long timers and the newbies to CML.  I think someone once 
>> called me an urban legend, which I am not just old and wasting the 
>> takpayers money.  If anyone is interested
>> I would give me stats, but I am sure most of you are tired of it..
>> health to all.
>> Skipd
>>
>

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Re: [CMLHope] Re: Hello all

[Marty Gartenberg]

Your the man Skip!

18's

Marty --... ...--

On Sat, Apr 16, 2016 at 3:40 PM, skipd  wrote:

> Well for those who may not know me, Name is Stewart Duffie (Skip) I have
> had CML for about 38 years now.  When I first was diag in 1977 there was
> not much in the line of drugs, in fact there was none except Myleran.  I
> survived with drug for 27 years, the Hem docs said to my GP let his counts
> go up until over 100,000 (wbc) and then start myleran at 2mg a day until it
> comes down to about 50% then one mg a day until it gets down to about
> 30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until
> until it gets back to over 100,000 then repeat all over again, we did this
> every year until 27 years was up then my spleen started to act up.  Wheee
> there was a new drug would I go on the trial .. yeep Imatinib would be my
> new drug It was not cheap, but we went on it until after about 2 years my
> Hem doc it was not working, beside he wanted me to try new drug call
> Nilotinib, same company just stronger, so I took nilotnib until it failed
> after some time. but we have a new drug coming down the line called
> Dasatinib lets try that.  That game so much plural Infusion they had to
> quit.
> went back on Nilotinib.  I was in my 30th year with CML.  I gues the doc
> thought it was a lost cause so he said will see you in six months, well by
> that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage,
> started getting blood and platelets twice week That is every Tue received
> platetlets IV . platelets and  Fri IV  Red Blood Cells.  The my Ferritin
> started going up until now it is over 9,000 it should be 200 I get Desferol
> three time IV for it.  My Platelets are low due to all these ddrugs over
> the years killing my bone marrow so I cannot product plts.  Red goes down
> but not as fast. I see all of you with CML that have such a hard time. Yet
> I am just coasting through this feeling not to bad, have had some rought
> spots, but all in all I feel not to bad I am getting up in years now,
> For those of you needing infusions it is not too bad, I have a PICC Line
> in (see utube Purple PICC lines ) People donate blood and plts how  kind as
> I get single donor platelets
> Apheresis Platelets) which take a 4 hours to give. other than cml I am
> healthy
>
> Next I want to thank Marty and I candoallttc asking me to talk about my
> journy with CML .  Thanks so much for your interest.
>
>
> On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:
>>
>> I did not know about google cmlhope.  I lost yahoo a year or so ago and
>> never could get back on.  I am now back on google and thanks to Marty all
>> seems right with the world.  I have had CML for a long time and will go off
>> and on the internet depends on where my blood and platelets are.  all that
>> means is how tired I am.  I do read all the posts when I can.  I want to
>> say hi to all the long timers and the newbies to CML.  I think someone once
>> called me an urban legend, which I am not just old and wasting the
>> takpayers money.  If anyone is interested
>> I would give me stats, but I am sure most of you are tired of it..
>> health to all.
>> Skipd
>>
> --
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[CMLHope] Re: Hello all

[skipd]

Well for those who may not know me, Name is Stewart Duffie (Skip) I have 
had CML for about 38 years now.  When I first was diag in 1977 there was 
not much in the line of drugs, in fact there was none except Myleran.  I 
survived with drug for 27 years, the Hem docs said to my GP let his counts 
go up until over 100,000 (wbc) and then start myleran at 2mg a day until it 
comes down to about 50% then one mg a day until it gets down to about 
30,000 then 1/2 mg until about 20,000 then stop. Let the wbc drift until 
until it gets back to over 100,000 then repeat all over again, we did this 
every year until 27 years was up then my spleen started to act up.  Wheee 
there was a new drug would I go on the trial .. yeep Imatinib would be my 
new drug It was not cheap, but we went on it until after about 2 years my 
Hem doc it was not working, beside he wanted me to try new drug call 
Nilotinib, same company just stronger, so I took nilotnib until it failed 
after some time. but we have a new drug coming down the line called 
Dasatinib lets try that.  That game so much plural Infusion they had to 
quit.
went back on Nilotinib.  I was in my 30th year with CML.  I gues the doc 
thought it was a lost cause so he said will see you in six months, well by 
that time my WBC. RBC, Plts, Neut, and ANC all we in the critical stage, 
started getting blood and platelets twice week That is every Tue received 
platetlets IV . platelets and  Fri IV  Red Blood Cells.  The my Ferritin 
started going up until now it is over 9,000 it should be 200 I get Desferol 
three time IV for it.  My Platelets are low due to all these ddrugs over 
the years killing my bone marrow so I cannot product plts.  Red goes down 
but not as fast. I see all of you with CML that have such a hard time. Yet 
I am just coasting through this feeling not to bad, have had some rought 
spots, but all in all I feel not to bad I am getting up in years now, 
For those of you needing infusions it is not too bad, I have a PICC Line in 
(see utube Purple PICC lines ) People donate blood and plts how  kind as I 
get single donor platelets 
Apheresis Platelets) which take a 4 hours to give. other than cml I am 
healthy

Next I want to thank Marty and I candoallttc asking me to talk about my 
journy with CML .  Thanks so much for your interest.

On Thursday, 14 April 2016 13:13:02 UTC-3, skipd wrote:
>
> I did not know about google cmlhope.  I lost yahoo a year or so ago and 
> never could get back on.  I am now back on google and thanks to Marty all 
> seems right with the world.  I have had CML for a long time and will go off 
> and on the internet depends on where my blood and platelets are.  all that 
> means is how tired I am.  I do read all the posts when I can.  I want to 
> say hi to all the long timers and the newbies to CML.  I think someone once 
> called me an urban legend, which I am not just old and wasting the 
> takpayers money.  If anyone is interested
> I would give me stats, but I am sure most of you are tired of it..
> health to all.
> Skipd
>

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