Re: [CMLHope] Stopping Gleevec

['Susan Zimmerman' via CMLHope]

Greenie,

I recommend Moffitt also. You know I go to Dr. Altman becuz I'm up here in 
Indiana. But my old doc was Pinilla that Jeanie recommended. They will help u 
get your medicine. A lot less expensive to go there!!!

Blessings,

Susan F. Zimmerman

On Sunday, August 6, 2017 Myvety2k via CMLHope  wrote:

Jeanie thank you I wait and see what happens if things don't work out for me I 
will go their.

 

greenie

 

In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time, 
cmlhope@googlegroups.com writes:

Hey Greenie,

I would like to suggest Moffitt cancer center here in Tampa. They will do 
everything to help you to get your meds. It's where I go and they have saved my 
life twice.  They accept Medicare and medicate assignment.  If you need help 
with copayment a there is a cancer copayment company called PSI. They paid my 
copayment for several years. You just need to start making calls and get the 
ball rolling.  However I pray they keep sending the meds. You and I have been 
fighting this for years. 

I go to dr Balducci head of senior oncology center in Moffitt but the head of 
leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of 
Drs meeting for bloodwork right at hospital and by the time you meet your dr 
your blood work is done for him.  Every three months they do a PCR.  They have 
vallet parking. 

Praying for you. 

Jeanie❤️❤️❤️❤️


My Motto: 

Faith and Pills

With Love

18's

Dx 1/2004 CML Leukemia

Started Gleevec 2/2004

Started Tasigna 9/2009

Started Sprycel 11/2009

Started Ponatinib 1/2015

Doctor Balducci Moffitt Cancer Center 


On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope  
wrote:

Hi Rien,   I started a study the first week in Jan. 2000 at Northwestern Hosp. 
in Chicago at 400 mg each day before it was approve my the FDA. They changed it 
later to 300 mg because of the Gleevec rash.  I got sick in 2009 and stopped 
Gleevec for 26 days because of sinus infection and the Doctor at home put me on 
an antibiotic which made me sick so I stopped for those 26 days.

 

 Then I started up again and had my blood work done at Northwestern and 
started on a trip out west.  My Cancer Doctor called me while driving and 
said," David your blood work showed that their are cancer cells back in your 
blood".  I told him remember I quit for 26 days and he replied that's right I 
forgot, did you start Gleevec again I told him yes and he said " well if it 
worked before it will work again and hung up and I never heard from again.  I 
later received a letter from him that he moved on to a different Hosp. in New 
York, NY. and that was the end of that.

 

So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to 
get my blood work see my new Doctor pick up my drugs and be on my way home.  
But instead I was told their no longer a study and you won't be getting the 
drug any longer.  That took my breath away.  Before I left they then told me 
that they changed their mind and would give me the drug and 7 month supply and 
would sent the rest later because they were short on Gleevec..

 

Last week I received a call telling me that for me to receive the drug that I 
would have to fly in every 3 months, that's not going to happen with the cost 
of flights, car rental, etc., not with my income at 78 years old.  They called 
me last week and they are suppose to have a meeting and let me know. 

 

When I started this study their were 8 of us out of 200 people nation way and 
that I would receive the drug STI571 for as long and I could tolerated it or 
stay alive.  Well that changed.  I am waiting for a phone call and I'm afraid 
it's not going to be good news,  So, my question is should I take a chance and 
stop the drug and get blood work in 3 months and see was happens with my blood 
count? I am a basket case waiting to see what happens.

 

If you have some answers please let met know.

 

Thank you,

 

David (greenie) Greenberg

South Fort Myers, Florida

 

 

 

In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, 
rien16...@gmail.com writes:

Hello!


I stopped taking Gleevec after 13 years. I had my checkups every month, but 
only in the first year. In the second year every two months and from now on 
every three months for the rest of my life.

It seems that everybody reacts in a different way. I myself had more bonecramps 
after having stopped than while taking Gleevec; but after the first year it 
gradually went better and now I have these cramps only a few times per year 
during the night. The swallen eyelids completely disappeared and unfortunately, 
my face became a lot thinner. Another side-effect: my hair was not grey anymore 
after havinig stopped, it is still dark, which was not the case before. After 
all I am glad that I took the decision, the problems of the first year will 
disappear, so I strongly advise you to do like I did.

Feel free to contact me for 

Re: [CMLHope] Stopping Gleevec

[Myvety2k via CMLHope]

Jeanie thank you I wait and see what happens if things don't  work out for 
me I will go their.
 
greenie
 
 
In a message dated 8/6/2017 5:56:57 P.M. Eastern Daylight Time,  
cmlhope@googlegroups.com writes:

Hey Greenie,
I would like to suggest Moffitt cancer center here  in Tampa. They will do 
everything to help you to get your meds. It's where I  go and they have 
saved my life twice.  They accept Medicare and medicate  assignment.  If you 
need help with copayment a there is a cancer  copayment company called PSI. 
They paid my copayment for several years. You  just need to start making calls 
and get the ball rolling.  However I pray  they keep sending the meds. You 
and I have been fighting this for  years. 
I go to dr Balducci head of senior oncology center  in Moffitt but the head 
of leukemia is dr Pinnalla. Check spelling. It's  great/ you go in an hour 
ahead of Drs meeting for bloodwork right at hospital  and by the time you 
meet your dr your blood work is done for him.  Every  three months they do a 
PCR.  They have vallet parking. 
Praying for you. 
Jeanie❤️❤️❤️❤️

My Motto:  
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 


On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope  
 wrote:



 
Hi Rien,   I started a study the first week in  Jan. 2000 at Northwestern 
Hosp. in Chicago at 400 mg each day before it was  approve my the FDA. They 
changed it later to 300 mg because of the Gleevec  rash.  I got sick in 2009 
and stopped Gleevec for 26 days because of  sinus infection and the Doctor 
at home put me on an antibiotic which made me  sick so I stopped for those 26 
days.
 
 Then I started up again and had  my blood work done at Northwestern 
and started on a trip out west.  My  Cancer Doctor called me while driving and 
said," David your blood work  showed that their are cancer cells back in 
your blood".  I told him  remember I quit for 26 days and he replied that's 
right I forgot, did you  start Gleevec again I told him yes and he said " well 
if it worked before it  will work again and hung up and I never heard from 
again.  I later  received a letter from him that he moved on to a different 
Hosp. in New  York, NY. and that was the end of that.
 
So, June 7th of this year I flew in from South Fort Myers.  FL. to Chicago 
to get my blood work see my new Doctor pick up my drugs and  be on my way 
home.  But instead I was told their no longer a study and  you won't be 
getting the drug any longer.  That took my breath  away.  Before I left they 
then 
told me that they changed their mind and  would give me the drug and 7 month 
supply and would sent the rest later  because they were short on Gleevec..
 
Last week I received a call telling me that for me to  receive the drug 
that I would have to fly in every 3 months, that's not  going to happen with 
the cost of flights, car rental, etc., not with my  income at 78 years old.  
They called me last week and they are suppose  to have a meeting and let me 
know. 
 
When I started this study their were 8 of us out of 200  people nation way 
and that I would receive the drug STI571 for as long and I  could tolerated 
it or stay alive.  Well that changed.  I am  waiting for a phone call and 
I'm afraid it's not going to be good  news,  So, my question is should I take 
a chance and stop the drug and  get blood work in 3 months and see was 
happens with my blood count? I am a  basket case waiting to see what happens.
 
If you have some answers please let met know.
 
Thank you,
 
David (greenie) Greenberg
South Fort Myers, Florida
 
 
 
 
In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, 
rien16...@gmail.com writes:

 
Hello!


I stopped  taking Gleevec after 13 years. I had my checkups every month, 
but only in  the first year. In the second year every two months and from now 
on every  three months for the rest of my life.
It seems  that everybody reacts in a different way. I myself had more 
bonecramps  after having stopped than while taking Gleevec; but after the first 
year  it gradually went better and now I have these cramps only a few times 
per  year during the night. The swallen eyelids completely disappeared and  
unfortunately, my face became a lot thinner. Another side-effect: my hair  
was not grey anymore after havinig stopped, it is still dark, which was  not 
the case before. After all I am glad that I took the decision, the  problems 
of the first year will disappear, so I strongly advise you to do  like I did.
Feel free  to contact me for further information.
Greetings  from the Netherlands - and let's be grateful that Gleevec 
exisits!!


Rien


2017-08-05 19:18 GMT+02:00 Vivi :

After seventeen years on Gleevec, and considered "in  remission," my 
oncologist asked me if I would like to stop taking  Gleevec.  
At first 

Re: [CMLHope] Stopping Gleevec

['Jeanie' via CMLHope]

I mean Medicare assignment. 

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

> On Aug 6, 2017, at 5:56 PM, Jeanie  wrote:
> 
> Hey Greenie,
> I would like to suggest Moffitt cancer center here in Tampa. They will do 
> everything to help you to get your meds. It's where I go and they have saved 
> my life twice.  They accept Medicare and medicate assignment.  If you need 
> help with copayment a there is a cancer copayment company called PSI. They 
> paid my copayment for several years. You just need to start making calls and 
> get the ball rolling.  However I pray they keep sending the meds. You and I 
> have been fighting this for years. 
> I go to dr Balducci head of senior oncology center in Moffitt but the head of 
> leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead 
> of Drs meeting for bloodwork right at hospital and by the time you meet your 
> dr your blood work is done for him.  Every three months they do a PCR.  They 
> have vallet parking. 
> Praying for you. 
> Jeanie❤️❤️❤️❤️
> 
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center 
> 
>> On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope  
>> wrote:
>> 
>> Hi Rien,   I started a study the first week in Jan. 2000 at Northwestern 
>> Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They 
>> changed it later to 300 mg because of the Gleevec rash.  I got sick in 2009 
>> and stopped Gleevec for 26 days because of sinus infection and the Doctor at 
>> home put me on an antibiotic which made me sick so I stopped for those 26 
>> days.
>>  
>>  Then I started up again and had my blood work done at Northwestern and 
>> started on a trip out west.  My Cancer Doctor called me while driving and 
>> said," David your blood work showed that their are cancer cells back in your 
>> blood".  I told him remember I quit for 26 days and he replied that's right 
>> I forgot, did you start Gleevec again I told him yes and he said " well if 
>> it worked before it will work again and hung up and I never heard from 
>> again.  I later received a letter from him that he moved on to a different 
>> Hosp. in New York, NY. and that was the end of that.
>>  
>> So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to 
>> get my blood work see my new Doctor pick up my drugs and be on my way home.  
>> But instead I was told their no longer a study and you won't be getting the 
>> drug any longer.  That took my breath away.  Before I left they then told me 
>> that they changed their mind and would give me the drug and 7 month supply 
>> and would sent the rest later because they were short on Gleevec..
>>  
>> Last week I received a call telling me that for me to receive the drug that 
>> I would have to fly in every 3 months, that's not going to happen with the 
>> cost of flights, car rental, etc., not with my income at 78 years old.  They 
>> called me last week and they are suppose to have a meeting and let me know.
>>  
>> When I started this study their were 8 of us out of 200 people nation way 
>> and that I would receive the drug STI571 for as long and I could tolerated 
>> it or stay alive.  Well that changed.  I am waiting for a phone call and I'm 
>> afraid it's not going to be good news,  So, my question is should I take a 
>> chance and stop the drug and get blood work in 3 months and see was happens 
>> with my blood count? I am a basket case waiting to see what happens.
>>  
>> If you have some answers please let met know.
>>  
>> Thank you,
>>  
>> David (greenie) Greenberg
>> South Fort Myers, Florida
>>  
>>  
>>  
>> In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, 
>> rien16...@gmail.com writes:
>> Hello!
>> 
>> I stopped taking Gleevec after 13 years. I had my checkups every month, but 
>> only in the first year. In the second year every two months and from now on 
>> every three months for the rest of my life.
>> It seems that everybody reacts in a different way. I myself had more 
>> bonecramps after having stopped than while taking Gleevec; but after the 
>> first year it gradually went better and now I have these cramps only a few 
>> times per year during the night. The swallen eyelids completely disappeared 
>> and unfortunately, my face became a lot thinner. Another side-effect: my 
>> hair was not grey anymore after havinig stopped, it is still dark, which was 
>> not the case before. After all I am glad that I took the decision, the 
>> problems of the first year will disappear, so I strongly advise you to do 
>> like I did.
>> Feel free to contact me for further information.
>> Greetings from the 

Re: [CMLHope] Stopping Gleevec

['Jeanie' via CMLHope]

Hey Greenie,
I would like to suggest Moffitt cancer center here in Tampa. They will do 
everything to help you to get your meds. It's where I go and they have saved my 
life twice.  They accept Medicare and medicate assignment.  If you need help 
with copayment a there is a cancer copayment company called PSI. They paid my 
copayment for several years. You just need to start making calls and get the 
ball rolling.  However I pray they keep sending the meds. You and I have been 
fighting this for years. 
I go to dr Balducci head of senior oncology center in Moffitt but the head of 
leukemia is dr Pinnalla. Check spelling. It's great/ you go in an hour ahead of 
Drs meeting for bloodwork right at hospital and by the time you meet your dr 
your blood work is done for him.  Every three months they do a PCR.  They have 
vallet parking. 
Praying for you. 
Jeanie❤️❤️❤️❤️

My Motto:
Faith and Pills
With Love
18's
Dx 1/2004 CML Leukemia
Started Gleevec 2/2004
Started Tasigna 9/2009
Started Sprycel 11/2009
Started Ponatinib 1/2015
Doctor Balducci Moffitt Cancer Center 

> On Aug 5, 2017, at 6:25 PM, Myvety2k via CMLHope  
> wrote:
> 
> Hi Rien,   I started a study the first week in Jan. 2000 at Northwestern 
> Hosp. in Chicago at 400 mg each day before it was approve my the FDA. They 
> changed it later to 300 mg because of the Gleevec rash.  I got sick in 2009 
> and stopped Gleevec for 26 days because of sinus infection and the Doctor at 
> home put me on an antibiotic which made me sick so I stopped for those 26 
> days.
>  
>  Then I started up again and had my blood work done at Northwestern and 
> started on a trip out west.  My Cancer Doctor called me while driving and 
> said," David your blood work showed that their are cancer cells back in your 
> blood".  I told him remember I quit for 26 days and he replied that's right I 
> forgot, did you start Gleevec again I told him yes and he said " well if it 
> worked before it will work again and hung up and I never heard from again.  I 
> later received a letter from him that he moved on to a different Hosp. in New 
> York, NY. and that was the end of that.
>  
> So, June 7th of this year I flew in from South Fort Myers. FL. to Chicago to 
> get my blood work see my new Doctor pick up my drugs and be on my way home.  
> But instead I was told their no longer a study and you won't be getting the 
> drug any longer.  That took my breath away.  Before I left they then told me 
> that they changed their mind and would give me the drug and 7 month supply 
> and would sent the rest later because they were short on Gleevec..
>  
> Last week I received a call telling me that for me to receive the drug that I 
> would have to fly in every 3 months, that's not going to happen with the cost 
> of flights, car rental, etc., not with my income at 78 years old.  They 
> called me last week and they are suppose to have a meeting and let me know.
>  
> When I started this study their were 8 of us out of 200 people nation way and 
> that I would receive the drug STI571 for as long and I could tolerated it or 
> stay alive.  Well that changed.  I am waiting for a phone call and I'm afraid 
> it's not going to be good news,  So, my question is should I take a chance 
> and stop the drug and get blood work in 3 months and see was happens with my 
> blood count? I am a basket case waiting to see what happens.
>  
> If you have some answers please let met know.
>  
> Thank you,
>  
> David (greenie) Greenberg
> South Fort Myers, Florida
>  
>  
>  
> In a message dated 8/5/2017 5:26:55 P.M. Eastern Daylight Time, 
> rien16...@gmail.com writes:
> Hello!
> 
> I stopped taking Gleevec after 13 years. I had my checkups every month, but 
> only in the first year. In the second year every two months and from now on 
> every three months for the rest of my life.
> It seems that everybody reacts in a different way. I myself had more 
> bonecramps after having stopped than while taking Gleevec; but after the 
> first year it gradually went better and now I have these cramps only a few 
> times per year during the night. The swallen eyelids completely disappeared 
> and unfortunately, my face became a lot thinner. Another side-effect: my hair 
> was not grey anymore after havinig stopped, it is still dark, which was not 
> the case before. After all I am gladthat I took the decision, the 
> problems of the first year will disappear, so I strongly advise you to do 
> like I did.
> Feel free to contact me for further information.
> Greetings from the Netherlands - and let's be grateful that Gleevec exisits!!
> 
> Rien
> 
> 2017-08-05 19:18 GMT+02:00 Vivi :
>> After seventeen years on Gleevec, and considered "in remission," my 
>> oncologist asked me if I would like to stop taking Gleevec.
>> At first glance, this sounded spectacular but then she said:
>> "you'll have to come in once a month to be tested."
>> After deep thought (about 

Re: [CMLHope] Re: Stopping Gleevec

[Myvety2k via CMLHope]

Thank you so much on your for your in put.
 
greenie
 
 
In a message dated 8/6/2017 12:01:55 A.M. Eastern Daylight Time,  
rbhuffm...@gmail.com writes:


As you can see everyone has a different result.  I have taken breaks from 
Gleevec several times for three months to 5 1/2  years.  I am now on 200mg 
Gleevec and still detectable. So it is your  decision and your ONC is sitting 
in your corner,  be brave and see how  long you can go without treatment.  
Worst case is you will have to start  your medicine.  Many advances have been 
made since we were scared almost  to death because we have cancer... 
On Saturday, August 5,  2017 at 12:18:05 PM UTC-5, Vivi wrote:  
After seventeen years on Gleevec, and considered "in  remission," my 
oncologist asked me if I would like to stop taking Gleevec.  
At first glance, this sounded spectacular but then she said:
"you'll have to come in once a month to be tested."
After deep thought (about twenty seconds), I said, "Talk to me about  this 
again in ten years."
Has anyone else stopped taking Gleevec after years of being "in  
remission?"  If so, how's it going?
What has changed in your life?  Have any of the obvious physical  
side-effects (leg cramps, blood in the whites of your eyes, swollen  eyelids,
abdominal fat) retreated or been reversed?
I'd appreciate any information other CMLers might have.
Best to all.   



-- 
-- 
[CMLHope]
A support group of _http://cmlhope.com_ (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 received this message because you are subscribed to the Google Groups  
"CMLHope" group.
To unsubscribe from this group and stop receiving emails  from it, send an 
email to cmlhope+unsubscr...@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 
"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 received this message because you are subscribed to the Google Groups 
"CMLHope" group.
To unsubscribe from this group and stop receiving emails from it, send an email 
to cmlhope+unsubscr...@googlegroups.com.
For more options, visit https://groups.google.com/d/optout.