Thanks Marty your always such a great help to me and everyone  in our group.
 
greenie
 
 
In a message dated 1/16/2015 10:47:55 P.M. Eastern Standard Time,  
wa2...@gmail.com writes:

Greenie,  


I once had a problem with them and was refused some services that I  
required so I started a dispute and even if it took several months I  
prevailed. 
Some of the people working there think they have the only say in it  and at 
times they are wrong. Now you know why I don't want to deal with the VA  
anymore.


If you read what was going on there recently then you will see exactly  
what I mean. A lot of people were fired for not doing their jobs.


These people working there probably never saw any action in any war yet  
they think that they have the power over you.


Please let me know if anything happens after you complain.


Good luck!


18's,


Marty



On Fri, Jan 16, 2015 at 10:06 PM, Myvety2k via CMLHope  
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:


Marty,  I was planning to do just that.   Thanks.
 
greenie
 
 
In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time, 
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  writes:

Greenie, if I were you I would appeal this decision. You have  absolutely 
nothing to loose.  
Now you know why I want nothing to do with the VA.


18's,


Marty


On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via  CMLHope 
<_cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) > wrote:


Good morning Marty,  The VA, they are on my I  don't want to talk about 
list.
I received a letter last week to see if I'm  eligibility for choice card 
benefits.  So I call their number and  Secretary Bob left me a message 
thanking me for my years of  service.  I was in the Navy for 6 years, from 1956 
to 
1962, 3 years  of active duty and 3 years of active reserve.
 
I gave the women my information and she told me that  I I'm not eligibility 
for anything.  All I want is to get  hearing ads.  She told me that I make 
to much money, What, to much  money are you kidding me.  She said I make 
$238.00 a month to much  and I don't qualify.  When you turn in you income 
taxes they check  you income.  I guess I should have gotten married and had 
kids 
 after getting out of high school or went into college or moved into  
Canada.  But no I went into the Navy then after getting out I went  into 
college.
 
Thank you Secretary Bob.
 
greenie
 
 
In a message dated 1/16/2015 7:09:14 A.M. Eastern Standard Time, 
_wa2yyx@gmail.com_ (mailto:wa2...@gmail.com)  writes:

Hi Richard,  


It seems that you are between a rock and a hard place with the  VA. That is 
something that you must deal with but if there is ever a  chance to get rid 
of them for your meds or care then I don't need to  go further...


I wish you the best of luck.


18's.


Marty


On Fri, Jan 16, 2015 at 12:32 AM, Richard H  <_rbhuffman1@gmail.com_ 
(mailto:rbhuffm...@gmail.com) > wrote:


Thanks for your service.  The only reason I use the VA is  to get my 
medicine.  Seeing I am a cancer patient I am forced  to see an Oncologist get 
them 
to sing the prescription. Without  the VA I could not afford the Health 
Insurance copay until I could  get assistance from the Drug company.   He was 
the  last one before I took  6 1/2 year vacation.  Went I came  back he 
decided he was going to be my primary ONC  We had a  discussion about who my 
Primary ONC was too be.  At that point  he went rogue (like a raging elephant.) 
 
I had to take a blood  test (CBC+DIF) today so they could check the 
progress of the  CML.  That is not going to help at all.  My  CBC+DIF has not 
shown 
any change since the CMLstarted its  Upward trend.  As of today it was 
decided that I start 300mg of  Gleevec. I contact my preferred ONC as soon I 
see 
any weight  gain.  Fortunately my Primary ONC is also building his own file 
 to assist me clear this hurdle..


I have several friends and family that have to go as they are  disabled 
Vets.  Most are being treated for Agent Orange and/or  PSD.


As Always. 18's and My your tomorrow be all sunshine &  roses. 


Richard  H.

On Thursday, January 15, 2015 at  4:13:53 AM UTC-6, wa2yyx wrote:

Richard, I am a vet and I would never go to the VA  for treatment even for 
a hang nail, because I have had previous  dealings with them. They were 
recently in the news for everything  that they were not doing for most of us 
vets.  


When someone has CML or any other major disease then most of  the doctors 
at the VA are not skilled or even trained in this  field. I am glad to see 
that you also have a true oncologist that  is taking care of you.


And, thank you for serving.


18's,


Marty





 

On Thu, Jan 15, 2015 at 12:32 AM, Richard H  <rbhuf...@gmail.com> wrote:

I am my own advocate,  I do have two ONCs. One  is at a new regional cancer 
center and i am completing 12 years  of treatment with.  The other is with 
the VA.  They  are assigning me underqualified Drs. that should not be 
trying  to treat me, but only approving the medication prescribed by the  
specialist.  The VA Doctor has no actual experience in  Blood Cancers.  I will 
start the procedures tomorrow to  resolve this.

Richard H.

On Wednesday, January 14,  2015 at 4:08:01 AM UTC-6, Shannon L wrote:  
Hi Richard and Jeanie  


I would think that they would want you to be informed. I  hope your issues 
resolve soon
Best wishes Shannon

On Friday, January 9, 2015 at  11:53:42 PM UTC+11, icando...@aol.com wrote: 
 
 
Hi Richard and thanks for the update.  My onc  doesn't like for me to be 
informed either; he just ignores  what I say and goes on to tell me what he 
thinks.
My uric acid was high along with my WBC and  Platelets.  He seemed to be 
more concerned with the  high uric acid--even called me on my cell personally 
twice;  never had that happen before.
He took me off Sprycel adn put me on Hydrea and  allopurinol; it's funny 
the same thing they did 11 years ago  when I was first dx.
He took another blood sample to see if I have a  mutation against the 
Sprycel.  It seems strange that I  had a mutation with Gleevec after 5 years.  
Is 
five  years a cut off point? Has anyone else have this  happen?  Anyone 
else been on Hydrea after tki?
Going next week to Moffitt to see if I have the  mutation.  Will let 
everyone know.
The leukemia has reared it's ugly head once  again!!
Pray for me and everyone in need.
Blessings
Jeanie 
(18) 
 
 
 
In a message dated 1/8/2015 11:59:08 P.M. Eastern  Standard Time, 
rbhuf...@gmail.com writes:

 
WOW!  Just read todays  posts.  I am praying for the group.  I will add  my 
problem to the list.  Dec. 30 I contacted ONC  about gaining 9.5 pounds 
water weight in 20 days after  restarting Gleevec.  His nurse called that he 
was out  of the country on vacation with his family.  She  checked with the 
DR. covering for him and he asked me to  stop Gleevec as he thought I was  
gaining weight  too fast also.  My ONC  did return to the office on Monday but 
finally had a  conference with his Associate and he agreed with that  
decision.  They both thought that I should be on a  different treatment.  My 
ONC 
was to draft an  e-mail to the VA ONC (the one controlling my  prescriptions) 
about my reaction to Gleevec and  to recommend the treatment he thinks I 
should be  on.  So I am still in a wait and see stage.  My  ONC tells me I am 
too informed about my condition and that  challenges most blood cancer 
specialists  that rarely  see CML.  
So let the fun and games continue.   I am still feeling great, but the 
"Gleevec Brain" was also  starting to show itself, but nine days off has 
cleared 
it.  I'm as sharp as a busted tack, but that is "normal" for  me.


As always, "life" and may your  tomorrow be beautiful and better than  
today.


Richard H.  



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