[CMLHope] Re: Medical insurance

[Rob]

I would guess they will probably try to say older treatments such as
Interferon.

Rob

On 11/28/06, livia klescova <[EMAIL PROTECTED]> wrote:
>
> I agree Rob. That's what I thought, so I don't understand why would Aetna
> say that there are other medications that can substitute Gleevec.  I wonder
> what they will offer to people instead of Gleevec.
>
> *Rob <[EMAIL PROTECTED]>* wrote:
>
> The only 2 drugs that are available by prescription are Gleevec and
> Sprycel. There are others in clinical trials but are not yet on the market.
> There are no 5 or 6 substitutes.
>
> Rob
>
> On 11/27/06, livia klescova <[EMAIL PROTECTED]> wrote:
> >
> > Hi Avis&group,
> > I had a very good offer to work for one company and their primary
> > insurance was Aetna.  Thanks God, I believe somebody has posted previously
> > that Aetna may drop Gleevec from their formulary and I did not accept the
> > job.  I am so glad now.
> > Just today I have been talkiing to my insurance company before I enroll
> > for the next year to find out if they are going to be covering Gleevec next
> > year and guess what !!! I haven't gotten any answer. I spoke to five
> > different people at Blue Cross Blue Shield, they referred me to different
> > people, then they said that I need to speak to Cura Script because they are
> > the pharmacy who is sending me Gleevec. So, I called them and I spoke to
> > three people and finally they said that I need to talk to NexCura or ... I
> > have no idea anymore which company, but I got transfered maybe five times
> > and then finally the person on the other side told me that I need to call
> > back my insurance, because it is the insurance who decides which medication
> > is going to be covered and which not... Now, I made all this phone calls at
> > work, three days in a row because we have a deadline at work to register
> > until today.  I have not heard any answer, nobody can tell me if they are
> > going to cover it or not, because they do not know it yet.  So, without
> > knowing if my insurance will cover Gleevec next year for me, I stayed with
> > my current plan/provider.  But I do not feel good about that. I spoke to
> > somebody from our HR department if they can help me to call this insurance
> > company and they said yes.  So, we will see what they will be able to find
> > out for me.I called Leukemia and Lymphoma Society and they recommended
> > me to talk to Patient Advocacy Foundation, so I will do that ... maybe
> > tomorrow...  I have been so frustrated with this.
> > Anyway, what are the 5 - 6 other drugs that can substitute Gleevec???
> > Please, let us know when you find out from Aetna.  I can't imagine with
> > which drugs (except of Sprycel) they can substitute Gleevec.
> > Livia
> >
> >
> > *Avis Ferguson < [EMAIL PROTECTED]>* wrote:
> >
> >
> > Rob - Cousin Dona was told a few months ago (via a letter sent to her)
> > that Aetna would no longer cover Gleevec. Since she is at present on a
> > clinical trial at MDACC,
> > she would not be affected right now. However, if she had to go off the
> > trial, it would be very costly. A spokesman at Aetna told her she would
> > receive one of
> > 5or 6 drugs that ae equal to Gleevec, so
> > not to worry. Some one on list wrote a
> > very concise, coherent letter to me, which
> > I copied, of how to go about fighting this.
> > She is in a quandary at the moment about
> > going onto Sprycel. This is a long and
> > complicated story which I will report on
> > after Monday when she has a biopsy on
> > supposedly "metastisic leukemia nodules" that could possibly date back
> > to 2002 when she went through the scare of a
> > "lesion" in her shoulder, which Dr. Talpaz
> > declared was simply something that shows up in MRI's and is of no
> > consequence. I gather someone at MDACC does not agree with him. I'll
> > write as soon as I know as there were 2 or 3 other people on the list
> > who had positive
> > MRI's and I wrote that t hey should probably check with Dr. T. first
> > before
> > proceeding to biopsies. I do not remember anyone posting further on the
> > subject.
> > Avis
> > Dona Dunn
> > dxd Jan. 2001
> > Gleevec 400 mg. April 2001
> > CCR Oct. 2001
> > #141 on Zavie's list
> >
> >
> > --
> > Cheap Talk? Check 
> > outYahoo!
> >  Messenger's low PC-to-Phone call rates.
> >
> >
> >
>
>
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[CMLHope] Re: Medical insurance

[livia klescova]

I agree Rob. That's what I thought, so I don't understand why would Aetna say 
that there are other medications that can substitute Gleevec.  I wonder what 
they will offer to people instead of Gleevec.

Rob <[EMAIL PROTECTED]> wrote:  The only 2 drugs that are available by 
prescription are Gleevec and Sprycel. There are others in clinical trials but 
are not yet on the market.  There are no 5 or 6 substitutes.

Rob

  On 11/27/06, livia klescova <[EMAIL PROTECTED]> wrote:Hi Avis&group,
  I had a very good offer to work for one company and their primary insurance 
was Aetna.  Thanks God, I believe somebody has posted previously that Aetna may 
drop Gleevec from their formulary and I did not accept the job.  I am so glad 
now.  
  Just today I have been talkiing to my insurance company before I enroll for 
the next year to find out if they are going to be covering Gleevec next year 
and guess what !!! I haven't gotten any answer. I spoke to five different 
people at Blue Cross Blue Shield, they referred me to different people, then 
they said that I need to speak to Cura Script because they are the pharmacy who 
is sending me Gleevec. So, I called them and I spoke to three people and 
finally they said that I need to talk to NexCura or ... I have no idea anymore 
which company, but I got transfered maybe five times and then finally the 
person on the other side told me that I need to call back my insurance, because 
it is the insurance who decides which medication is going to be covered and 
which not... Now, I made all this phone calls at work, three days in a row 
because we have a deadline at work to register until today.  I have not heard 
any answer, nobody can tell me if they are going to cover it or
 not, because they do not know it yet.  So, without knowing if my insurance 
will cover Gleevec next year for me, I stayed with my current plan/provider.  
But I do not feel good about that. I spoke to somebody from our HR department 
if they can help me to call this insurance company and they said yes.  So, we 
will see what they will be able to find out for me.I called Leukemia and 
Lymphoma Society and they recommended me to talk to Patient Advocacy 
Foundation, so I will do that ... maybe tomorrow...  I have been so frustrated 
with this. 
  Anyway, what are the 5 - 6 other drugs that can substitute Gleevec??? Please, 
let us know when you find out from Aetna.  I can't imagine with which drugs 
(except of Sprycel) they can substitute Gleevec.  
  Livia
  

Avis Ferguson < [EMAIL PROTECTED]> wrote:
  
Rob - Cousin Dona was told a few months ago (via a letter sent to her) 
that Aetna would no longer cover Gleevec. Since she is at present on a
clinical trial at MDACC, 
she would not be affected right now. However, if she had to go off the
trial, it would be very costly. A spokesman at Aetna told her she would 
receive one of
5or 6 drugs that ae equal to Gleevec, so
not to worry. Some one on list wrote a
very concise, coherent letter to me, which
I copied, of how to go about fighting this.
She is in a quandary at the moment about 
going onto Sprycel. This is a long and
complicated story which I will report on
after Monday when she has a biopsy on
supposedly "metastisic leukemia nodules" that could possibly date back
to 2002 when she went through the scare of a
"lesion" in her shoulder, which Dr. Talpaz 
declared was simply something that shows up in MRI's and is of no
consequence. I gather someone at MDACC does not agree with him. I'll
write as soon as I know as there were 2 or 3 other people on the list
who had positive 
MRI's and I wrote that t hey should probably check with Dr. T. first
before
proceeding to biopsies. I do not remember anyone posting further on the
subject.
Avis
Dona Dunn
dxd Jan. 2001
Gleevec 400 mg. April 2001 
CCR Oct. 2001
#141 on Zavie's list


  
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[CMLHope] Re: Expiration dates on Gleevec

[livia klescova]

I just checked my Gleevec bottle and there is no expiration date at all : ) 

Richard H <[EMAIL PROTECTED]> wrote:  
Yes it can happen. I have had Gleevec transfered from another pharmacy
in the chain to fulfill my request. So if your regular stop was out
they simply requested a transfer from the closest store to complete
fill the RX.

Richard H.
dxd 2/02
gleevec 2/03
PCRU 6/04
Q-PCR 11/04 .0014 and holding





 
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[CMLHope] Re: CLL

[Trey]

Here are a few to research:

http://listserv.acor.org/archives/cll.html

http://health.groups.yahoo.com/group/cllresearch/messages

http://www.cllsupport.org.uk/

--Trey


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[CMLHope] Re: Expiration dates on Gleevec

[Richard H]

Yes it can happen.  I have had Gleevec transfered from another pharmacy
in the chain to fulfill my request.  So if your regular stop was out
they simply requested a transfer from the closest store to complete
fill the RX.

Richard H.
dxd 2/02
gleevec 2/03
PCRU 6/04
Q-PCR 11/04 .0014 and holding


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[CMLHope] CLL

[wayne becken]

Does anyone know if there is a support group for CLL ? If so how do you access 
and join. Thanks!

  Wayne!- Diagnosed with CML 1989- Gleevec 
since Jan 2000.

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[CMLHope] platelets

[Sandy Johnson]

Hi Anjana, Things are about the same here with Randy.He is taking a neulasta 
shot about every 4 weeks now.It is lasting a bit longer each time.The problem 
now is his platelets are going to low.87.k/ul  His RBC is 3.11. My question is 
how low will they let it go befor they give him platelets? The specialist in 
Iowa City told us that as soon as the CML was under control the blood would 
take care of it's self and come up on it's own.He has a PCR test on the 29 of 
this month.His last fish was so low that they said it was not accurate,so now 
the will only do pcr testing.Do you think it just the gleevec(800mg)keeping his 
counts so low?His ANC was 1.1 yesterday,he will have a shot when it gets under 
1. Thanks Anjana and everyone else for being my sounding board.Sandy

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[CMLHope] Knee Replacement-Jim Rodeghier

[Bob Stewart]

Dear Jim,
   
  I have had CML since my 5/20/1997 diagnosis and have been on Gleevec at 400 
MG since 2/2/2001.  In the Spring of 2004 I had my left knee replaced.  I had 
no problems Gleevec-wise.  JUST BE SURE TO DO ALL OF THE PT required of you, 
and push yourself to do more if you're able.  Sure, the post-operation pain is 
gonna  to make you want to just sit but you can't--PUSH YOURSELF!!!
   
  If you have any problems or concerns just e-mail me and I'll try to help.
   
  Bob Stewart, Granger, Indiana
   
   
  JIM SAID:
  "Hi to all,
   
  It seems to me that some on the list have inquired in the past about 
this subject.  Well I am a conductor on a commuter train in Chicago and 
have become unable to work because of the pain in my right knee.  Went 
to the Orthopedic Specialist and x-rays showed there was no cartilage 
remaining in that knee.  The only answer is a knee replacement.
   
  Has any one had a problem like this or any input from knowledge 
gained from a friend or relative?
   
  Thanks 
  Jim Rodeghier "  

 



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[CMLHope] Sprycel, babies, joint pain

[Ihsbooks]

Terry is on a medical study, and officially he is supposed to wear condoms  
since they don't know what Sprycel "might" do to seminal fluid and how the  
woman's body will react to the possible changes.   
 
I wrote the other day how Terry has been doing VERY well as to side effects  
compared to the nightmare he went through for 18 months while he took  
Gleevec.From Friday after Thanksgiving on, Terry has done  very poorly, in 
lots 
of pain throughout his body.  I don't know what is  going on, but it has made 
me very uneasy.   He would spike a slight  fever constantly throughout the 
weekend.   He had a cardiologist appt,  lab work at the cancer center, and also 
a 
family doc appt on Monday.All that was found was one ear was slightly 
infectedhis labs all look  good.   We only jokingly said that he has been 
doing so well, working  fulltime, that the prospect of a 5 day weekend was just 
too overwhelming!!   LOL!!!
 
Seriously, though, I was quite panicked on Mon morning worried that we were  
heading down a bad path once again.   He is going to have some cardiac  tests 
before Christmas, but on the surface he is fine  heart-wise.Our family 
doctor could see that Terry was in  obvious discomfort, so Terry is to have 
several different xrays on various  joints, knees, ankles, etc.   He is to also 
to 
have an MRI just of the  knees, but not full body, yet to my understanding.
 
Terry did work yesterday, but he is still so uncomfortable.   He  did sleep 
much better last night compared to the last 4 nights.
 
to be honest, up till summer, as Terry would moan & groan I was still  
blaming this on residual Gleevec side effects...but this is now more than 6  
months 
since he has taken Gleevec.   The other issue is that Terry  does have side 
issues such as excessive water weight gain, some arthritis, and  of course, he 
is 47, and just getting older.   This flare-up of all  over body pain just came 
on so suddenly, it is just very disconcerting.  I  asked to take him to the 
ER several times, but he refused to go.Each time we have gone to the ER he 
ends up in the hospital for over a  week.   
 
He is about to get up & go to work, so he is just trying to work  through the 
physical discomfort.   We have been having unusually  beautiful weather in 
Texas, so we can't blame the cold, or constant weather  changes.   However, we 
have a big cold front approaching on Thursday,  so I hope we have some idea 
what is going on by then.   He is going to  UTSW to see Dr. Collins for the 
medical study on Sprycel on Wednesday.
 
Lora


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[CMLHope] Re: Medical insurance

[zippimom]

I had Aetna insurance and changed to blue cross blue shield because
they didn't cover MDAnderson. I live in Houston and have my insurance
as a Federal retiree. As far as dealing with insurance companies don't
believe what they tell youget it in writing, Irene McAloon DX 5/04
on the SKI-606 trails @MDAnderson


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