Re: [CMLHope] Stopping Gleevec and BMB X4 !

[Marty Gartenberg]

Hi Angie,

In my long list of my bucket list I have gone through seventeen bone marrow
"gathering" expeditions, BMB's or MBA's, to many to count so why not take
your pick?

But is each one of them they hurt but I had a name for them, A.R.P.I.T.A.
(A real pain in the Azz) and so it was in the early days of the
A.R.P.I.T.A. But I got through it. By the way there was nothing about
having any pain killers only the four syringes of 2% lidocaine, which did
nothing. At least they only lasted for several seconds.

I think that the longest amount of these needles were probably around 30 or
more. And that is still a close friend of mine Skip. Oh by the way he has
gone through I think about 30 years or more of CML without even taking and
TKI's or any bone marrow transplants. I believe we are looking for
a Guiness  world book of  records.

18's

Marty

On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS  wrote:

> Thanks, Marty. I am having no great emotional upheaval over quitting
> Gleevec. Whatever will be, will be, and everything is a learning
> experience. It just feels strange after 14+ years.
>
> In other news, Monday a new platelet dr. decided to do a BMB.
> You won't believe this: It took him FOUR tries to get a viable sample.
> Never had this happen before. Four crunching entries.
> Sort of like having four BMB's at the same time. Afterwards I was almost
> in a state of shock and could not stand, nauseous, very stressed. (In
> Canada we do not get sedation or morphine for this procedure.) It took me
> 90 minutes to de-stress and had to drive myself home because he had not
> warned me that he intended to do this and to bring a driver along. There's
> one doctor who will NOT be doing another BMB on me!! I think he needs a few
> more lessons in how to do it.
>
> Anyway, I am finestill low platelets. Life goes on.
> Angie
>
>
> --
> *From:* Marty Gartenberg 
> *To:* cmlhope@googlegroups.com
> *Sent:* Wednesday, June 17, 2015 7:29 AM
> *Subject:* Re: [CMLHope] Stopping Gleevec
>
> Hi Angie,
>
> You are not thee only one that has stopped your TKI and felt that way.
> sometimes something that we take as far as any TKI's ends up being a crutch
> for us and we always seem to worry if this or that will come back to haunt
> us. It is a normal human response and we worry about it.
>
> Angie, since your really feeling better without the Gleevec then you
> should learn to live your life in the best way that you can.
>
> I have seen this many times before. A man that both Zavie and I knew was
> on Alpha Interferon and suffered immensely from it's horrible side effects.
> He suffered for many years and when he was finally PCRU everyone told him
> to stop using it anymore but he still continued still suffering because it
> had become a crutch for him. He had the same feelings as you now have and
> after a lot of coaching from everyone he finally stopped it.
>
> He has been off of it for many years and no reoccurrence of CML ever came
> back to him. His system finally "burned out" his CML.
>
> Remember that everything in life has a double edged soared. If you do
> something will it come back to haunt you or if you don't do something will
> it come back to haunt you??
>
> I just can't live my life that way, and if something does come back then I
> will deal with it.
> Remember me telling everyone that Leukemia is both a disease of not only
> the body but it also poisons the mind.
>
> Angie, why not start writing a diary and put everything in there that you
> have gone through the day? I do it and it lets me reflect about what I
> could have done better or worse during the day. I call it my frustrations
> and how to deal with them, and it really works for me as I am sure it will
> also work for you or anyone else. By the way I see that Giora sent you his
> response. read it if you haven't as yet.
>
> Here is something called "expect the best" Please read it and it will also
> help you with yourself.
>
> One last thing. I am not a doctor but have gone through a lot of things in
> my life health wise as you already know. Have you ever wondered why I am
> still alive? I did at one time but maybe it is because I try helping others
> as a promise that I once made to GOD and also received help myself from
> others. It is a two way street, or I am the luckiest son of a bitch on this
> planet ???
> 18's,
>
> Marty
>
>
> *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.*
> *E

Re: [CMLHope] Stopping Gleevec and BMB X4 !

['Icandoallttc' via CMLHope]

Great video Marty.  
Thanks 

My Motto: Faith and Pills
Jeanie 🐟🐟18,s 
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 Aug 10, 2015, at 10:24 AM, Marty Gartenberg  wrote:
> 
> Dear Angie, and everyone else for that matter.
> 
> Please don't ever be disappointed in whatever your problems may be. I have 
> said this time and time again, and you know what? Just look at what happened 
> to me. 
> 
> Now I don't profess to be a man of "9 lives" but only to be a human being 
> that has been through a great deal but I just take everything in stride one 
> day at a time and have been doing this until now for the past 71 years.
> 
>  And I guess that I must know what I am talking about, or hopefully I do? Of 
> course not since I was a child, but the was the time for having fun and 
> growing up, and to see what everyone around me was teaching me.
> 
> You know what, things haven't really changed that much because life is a 
> learning experience 
> 
> I have seen many things in my life, but there is and has been something in my 
> life as of age 45 years old/young? And that is I just know that there WILL be 
> a cure for Leukemia!!! You just have to sit down and keep this in your minds.
> 
> I would like you to see something that "tugs" at me heart strings and 
> basically has little to do with Leukemia but has a lot of things to do with 
> two events that I had to do through in my life, and after these I sill am 
> living proof that so far I have survived. And by the way so far. so have you.
> 
> This video has brought some tears as well as some joy to myself. It just 
> shows what one human can do for each other, and then for good luck add in a 
> dog. Yes GOD has a way of sorting in a dog, if you so should spell dog 
> backwards it comes up with GOD. I always wondered about that.
> 
> www.youtube.com/watch?v=mz2kDH0MCn4
> 
> 18's,
> 
> Marty
>  
> 
>  
> 
>> On Wed, Jun 17, 2015 at 11:48 AM, 'Icandoallttc' via CMLHope 
>>  wrote:
>> Not every one gets to pcr on tkis.  I never did on gleevec.   It quit on me 
>> instead of me quitting.  
>> I finally reached pcr on sprycel.   If you do quit keep a close check on 
>> your counts. 
>> Remember there are more tkis you can take if you have problems on down the 
>> line. 
>> I am now on the newest one out.  
>> Live each day for that day and enjoy it to its fullest. I have been taking 
>> tkis for 11 years as of last January and I'm still here. 
>> 
>> 
>> Prayers & Blessings Jeanie 🐟🐟18,s
>> Dx 1/2004
>> Started Gleevec 2/2004
>> Started Tasigna  9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib January 2015
>> Dr Balducci Moffitt Cancer Center
>> 
>>> On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS  wrote:
>>> 
>>> Thanks, Marty. I am having no great emotional upheaval over quitting 
>>> Gleevec. Whatever will be, will be, and everything is a learning 
>>> experience. It just feels strange after 14+ years.
>>> 
>>> In other news, Monday a new platelet dr. decided to do a BMB.
>>> You won't believe this: It took him FOUR tries to get a viable sample. 
>>> Never had this happen before. Four crunching entries.
>>> Sort of like having four BMB's at the same time. Afterwards I was almost in 
>>> a state of shock and could not stand, nauseous, very stressed. (In Canada 
>>> we do not get sedation or morphine for this procedure.) It took me 90 
>>> minutes to de-stress and had to drive myself home because he had not warned 
>>> me that he intended to do this and to bring a driver along. There's one 
>>> doctor who will NOT be doing another BMB on me!! I think he needs a few 
>>> more lessons in how to do it.
>>> 
>>> Anyway, I am finestill low platelets. Life goes on.
>>> Angie
>>> 
>>>  
>>> From: Marty Gartenberg 
>>> To: cmlhope@googlegroups.com 
>>> Sent: Wednesday, June 17, 2015 7:29 AM
>>> Subject: Re: [CMLHope] Stopping Gleevec
>>> 
>>> Hi Angie,
>>> 
>>> You are not thee only one that has stopped your TKI and felt that way. 
>>> sometimes something that we take as far as any TKI's ends up being a crutch 
>>> for us and we always seem to worry if this or that will come back to haunt 
>>> us. It is a normal human response and we worry about it.
>>> 
>>> Angie, since your really feeling better without the Gleevec then you should 
>>> learn to live your life in the best way that you can.
>>> 
>>> I have seen this many times before. A man that both Zavie and I knew was on 
>>> Alpha Interferon and suffered immensely from it's horrible side effects. He 
>>> suffered for many years and when he was finally PCRU everyone told him to 
>>> stop using it anymore but he still continued still suffering because it had 
>>> become a crutch for him. He had the same feelings as you now have and after 
>>> a lot of coaching from everyone he finally stopped it. 
>>> 
>>> He has been off of it for many years and no reoccurrence of CML ever came 
>>> back to hi

Re: [CMLHope] Stopping Gleevec and BMB X4 !

[Marty Gartenberg]

Dear Angie, and everyone else for that matter.

Please don't ever be disappointed in whatever your problems may be. I have
said this time and time again, and you know what? Just look at what
happened to me.

Now I don't profess to be a man of "9 lives" but only to be a human being
that has been through a great deal but I just take everything in stride one
day at a time and have been doing this until now for the past 71 years.

 And I guess that I must know what I am talking about, or hopefully I do?
Of course not since I was a child, but the was the time for having fun and
growing up, and to see what everyone around me was teaching me.

You know what, things haven't really changed that much because life is a
learning experience

I have seen many things in my life, but there is and has been something in
my life as of age 45 years old/young? And that is I just know that there
WILL be a cure for Leukemia!!! You just have to sit down and keep this in
your minds.

I would like you to see something that "tugs" at me heart strings and
basically has little to do with Leukemia but has a lot of things to do with
two events that I had to do through in my life, and after these I sill am
living proof that so far I have survived. And by the way so far. so have
you.

This video has brought some tears as well as some joy to myself. It just
shows what one human can do for each other, and then for good luck add in a
dog. Yes GOD has a way of sorting in a dog, if you so should spell dog
backwards it comes up with GOD. I always wondered about that.

*www.youtube.com/watch?v=mz2kDH0MCn4
*

18's,

Marty




On Wed, Jun 17, 2015 at 11:48 AM, 'Icandoallttc' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Not every one gets to pcr on tkis.  I never did on gleevec.   It quit on
> me instead of me quitting.
> I finally reached pcr on sprycel.   If you do quit keep a close check on
> your counts.
> Remember there are more tkis you can take if you have problems on down the
> line.
> I am now on the newest one out.
> Live each day for that day and enjoy it to its fullest. I have been taking
> tkis for 11 years as of last January and I'm still here.
>
>
> Prayers & Blessings Jeanie 🐟🐟18,s
> Dx 1/2004
> Started Gleevec 2/2004
> Started Tasigna  9/2009
> Started Sprycel 11/2009
> Started Ponatinib January 2015
> Dr Balducci Moffitt Cancer Center
>
> On Jun 17, 2015, at 8:35 AM, ANGELYN ESDERS  wrote:
>
> Thanks, Marty. I am having no great emotional upheaval over quitting
> Gleevec. Whatever will be, will be, and everything is a learning
> experience. It just feels strange after 14+ years.
>
> In other news, Monday a new platelet dr. decided to do a BMB.
> You won't believe this: It took him FOUR tries to get a viable sample.
> Never had this happen before. Four crunching entries.
> Sort of like having four BMB's at the same time. Afterwards I was almost
> in a state of shock and could not stand, nauseous, very stressed. (In
> Canada we do not get sedation or morphine for this procedure.) It took me
> 90 minutes to de-stress and had to drive myself home because he had not
> warned me that he intended to do this and to bring a driver along. There's
> one doctor who will NOT be doing another BMB on me!! I think he needs a few
> more lessons in how to do it.
>
> Anyway, I am finestill low platelets. Life goes on.
> Angie
>
>
> --
> *From:* Marty Gartenberg 
> *To:* cmlhope@googlegroups.com
> *Sent:* Wednesday, June 17, 2015 7:29 AM
> *Subject:* Re: [CMLHope] Stopping Gleevec
>
> Hi Angie,
>
> You are not thee only one that has stopped your TKI and felt that way.
> sometimes something that we take as far as any TKI's ends up being a crutch
> for us and we always seem to worry if this or that will come back to haunt
> us. It is a normal human response and we worry about it.
>
> Angie, since your really feeling better without the Gleevec then you
> should learn to live your life in the best way that you can.
>
> I have seen this many times before. A man that both Zavie and I knew was
> on Alpha Interferon and suffered immensely from it's horrible side effects.
> He suffered for many years and when he was finally PCRU everyone told him
> to stop using it anymore but he still continued still suffering because it
> had become a crutch for him. He had the same feelings as you now have and
> after a lot of coaching from everyone he finally stopped it.
>
> He has been off of it for many years and no reoccurrence of CML ever came
> back to him. His system finally "burned out" his CML.
>
> Remember that everything in life has a double edged soared. If you do
> something will it come back to haunt you or if you don't do something will
> it come back to haunt you??
>
> I just can't live my life that way, and if something does come back then I
> will deal with it.
> Remember me telling everyone that Leukemia is both a disease of not only
> the body but it also poisons the mi