Re: [CMLHope] Doctors Visit

[C.M. Houtz]

We both have been through a lot, so I know that you understand where I am.  I'm 
doing okay and trying to handle everything, but a week ago I did have an 
anxiety attack and it scared me, but when I told the doctor about it, she said 
that it was bound to happen as I keep to much in side and needed to release it, 
so I did.  Wow, never had one before and hope not to have it happen again.  

I had lots of company today, and that's always good for me.  I do enjoy having 
people around me.  My doctor is trying to get me back on Home Care once again 
as my feet are so swollen...as are my legs and I need to have someone taking 
care of this and other problems.  Our home care is excellent, but don't know if 
I will qualify right now.  Social Security pays for that one, and they have set 
times you're allowed to be on it.

You take care and it was so good seeing you on here.
18's to you,
Millie

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Re: [CMLHope] 10 years post-transplant today.

[Marty Gartenberg]

Hi Glenn,

So your out ten years post transplant. That is really good to hear. By the
way, you are not in remission because after five years it's called "cured"

I like to hear about long time survivors. I had my bone marrow transplant
more then twenty three years ago.

18's (Symbol for life)

Marty


On Wed, Jul 31, 2013 at 2:03 PM, glenn fuller wrote:

> Ten years ago I had  a  Bone Marrow transplant at UCSF medical center.   I
> have been in complete remission from CML since then.
>
>
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Re: [CMLHope] Doctors Visit

[C.M. Houtz]

Hi GreenieYou got the right information on your eyes. The first time it 
happened to me...I was on Gleevec at the time, I really got scared and went to 
my eye doctor and he didn't know what to think as he was unfamiliar with the 
Gleevec, but I took him some information and he checked it out and told me the 
same thing.  I still use the liquid tears and they do help, even on Tasigna, 
but haven't had but one eye bleed since being on the tasigna.  What I want to 
see if a picture of you with your eye lids down to your belly.  It made me 
smile, and I really need that lately.  Thanks for doing that.  I do hope that 
you can get your eye lids taken care of.  I haven't had that problem, yet, and 
I don't want to.  I have enough without that.  

18's to youMillie

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Re: [CMLHope] Doctors Visit

[Marty Gartenberg]

Dear Millie, you have been through so much, but you are a very strong
person. I wish you the very best of luck

18's

Marty


On Wed, Jul 31, 2013 at 12:46 AM, C.M. Houtz  wrote:

> **
> *Hi all,  I did tell you I'd let you know how my Doctors visit went
> today.  Well, we did straighten a lot out, about meds. etc. but nothing
> about the liver.  She has talked to the other doctors and no one seems to
> know where they're going with this one.  They think it's all being caused
> by the meds and I'm on so many that could have caused it.  She said it
> probably started on Gleevec as they had me on twice the amount of what
> others were taking, and then it stopped working after being on it for years
> and he put me on the Tasigna.  That's been great and got me into remission,
> but it also probably cost me...causing the liver problems.  Well, I take so
> many drugs that could have caused it...or the combination of them all and
> we probably will never know.  She did tell me that she had talked to the
> other doctors and Dr. Gandhi (my Oncologist) is talking with the people who
> make the drug and see if their doctors can come up with something.  I'm
> still off of the Tasigna, so..when they make up their minds, I will let
> you know where we're going from here.  She also addressed my pain and wants
> me to go back to pain management and see if injections might help the
> pain.  They also won't go through the liver, so it's a good choice for that
> problem (if it works)  I'm trying to stay positive and work with them
> on whatever I can.  Just wanted you all to know where I'm at and will let
> you know when they make a decision about what to do with me*
> **
> *Hope everyone is fine tonight.  I'm heading to bed as I really need a
> good nights sleep.*
> **
> *You're always in my thoughts and prayers,*
> *Hugs to all,*
> *Millie*
>
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Re: [CMLHope] Doctors Visit

[Myvety2k]

Thank you for your reply.  No one has ever explained  it to me this way.  
Of course their's nothing you can do about the droopy  eye lids put they are 
going to fix that next month.  Thanks again,   greenie
 
 
In a message dated 7/31/2013 7:44:29 P.M. Eastern Daylight Time,  
pfemail...@gmail.com writes:

 
Hi  Greenie – 
The  watery eyes are caused by the way Gleevec dries up the eyes. It may 
sound  strange but the solution that many patients use is daily use of 
lubricating  eye drops. Some patients use basic lubricating drops and some use 
the  
artificial tears type of drops. Some put in drops once a day, some do this 
in  the morning and at the end of the day.  
Here  is additional information from a presentation by Dr. Druker’s nurse, 
Carolyn  Blasdel. Hope you find this helpful! Pat 
Eyes 
Swelling around the  eyes (periorbital edema)—one of my patients calls it  “
pig- 
eye.” This is  probably the most common Gleevec side effect. Excessive 
tearing  is 
common. Blurry  vision with tearing happens. Also, bleeding into the whites 
 of 
the eyes  (sub-conjunctival hemorrhages) occurs. A blood vessel breaks and  
you 
feel a stinging  pain. There is bright red blood in the white of the eye. It
’s  very 
scary looking, but  it is not serious. To treat this we use artificial 
tears, even  when 
you are having  excessive tearing. Using additional tears can help keep the 
 eyes 
washed out.  Prescription steroid eye drops has been helpful for some 
people.  If 
you are having a  lot of trouble with tearing, I encourage you to see an  
ophthal- 
mologist so that  he/she can look to see if any mechanical problems can be  
cor- 
rected. There is no  treatment needed for sub-conjunctival hemorrhages. The 
body absorbs the  blood on its own and the eye will return to normal 
without  any 
permanent  damage 
 
 
From:  cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf 
Of  myvet...@aol.com
Sent: Wednesday, July 31, 2013 4:32  PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope]  Doctors Visit

 
Hi  everyone,   I have a question?  I've been on Gleevec for over  13 years 
and over the years I have had watery eye's and burred vision.   Mostly the 
right eye, a week or two will go by then I'll get up and the left  eye will 
be burred but mostly the right eye. It's hard to get glasses because  my 
eyes keep changing.  Has anyone else had the same problem, if so  please let me 
know.  I'm going in next month to have my eye lids lowered  they are 
dragging down to my feet, and the bottom of my eyes are almost as  bad.  When I 
wake in the morning I look like a balloon is around my  eyes.  My bottom of my 
eye is hanging down to my belly.  It's not a  pretty sight.  Stay healthy, 
greenie
 

 
 
In a  message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time, 
_houtz@ptd.net_ (mailto:ho...@ptd.net)   writes:

 
Hi  all,  I did tell you I'd let you know how my Doctors visit went  today. 
 Well, we did straighten a lot out, about meds. etc. but nothing  about the 
liver.  She has talked to the other doctors and no one seems  to know where 
they're going with this one.  They think it's all being  caused by the meds 
and I'm on so many that could have caused it.  She  said it probably 
started on Gleevec as they had me on twice the amount  of what others were 
taking, 
and then it stopped working after being on it  for years and he put me on 
the Tasigna.  That's been great and got me  into remission, but it also 
probably cost me...causing the liver  problems.  Well, I take so many drugs 
that 
could have caused it...or  the combination of them all and we probably will 
never know.  She did  tell me that she had talked to the other doctors and 
Dr. Gandhi (my  Oncologist) is talking with the people who make the drug and 
see if their  doctors can come up with something.  I'm still off of the 
Tasigna,  so..when they make up their minds, I will let you know where 
we're 
going  from here.  She also addressed my pain and wants me to go back to 
pain  management and see if injections might help the pain.  They also won't  
go through the liver, so it's a good choice for that problem (if it  
works)  I'm trying to stay positive and work with them on whatever  I can.  
Just wanted you all to know where I'm at and will let you know  when they make 
a decision about what to do with me
 

 
Hope  everyone is fine tonight.  I'm heading to bed as I really need a good 
 nights sleep.
 

 
You're  always in my thoughts and prayers,
 
Hugs  to all,
 
Millie
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RE: [CMLHope] Doctors Visit

[Pat Elliott]

Hi Greenie -

The watery eyes are caused by the way Gleevec dries up the eyes. It may
sound strange but the solution that many patients use is daily use of
lubricating eye drops. Some patients use basic lubricating drops and some
use the artificial tears type of drops. Some put in drops once a day, some
do this in the morning and at the end of the day. 

 

Here is additional information from a presentation by Dr. Druker's nurse,
Carolyn Blasdel. Hope you find this helpful! Pat

Eyes

Swelling around the eyes (periorbital edema)-one of my patients calls it
"pig-

eye." This is probably the most common Gleevec side effect. Excessive
tearing is

common. Blurry vision with tearing happens. Also, bleeding into the whites
of

the eyes (sub-conjunctival hemorrhages) occurs. A blood vessel breaks and
you

feel a stinging pain. There is bright red blood in the white of the eye.
It's very

scary looking, but it is not serious. To treat this we use artificial tears,
even when

you are having excessive tearing. Using additional tears can help keep the
eyes

washed out. Prescription steroid eye drops has been helpful for some people.
If

you are having a lot of trouble with tearing, I encourage you to see an
ophthal-

mologist so that he/she can look to see if any mechanical problems can be
cor-

rected. There is no treatment needed for sub-conjunctival hemorrhages. The

body absorbs the blood on its own and the eye will return to normal without
any

permanent damage

 

 

From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] On Behalf
Of myvet...@aol.com
Sent: Wednesday, July 31, 2013 4:32 PM
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] Doctors Visit

 

Hi everyone,   I have a question?  I've been on Gleevec for over 13 years
and over the years I have had watery eye's and burred vision.  Mostly the
right eye, a week or two will go by then I'll get up and the left eye will
be burred but mostly the right eye. It's hard to get glasses because my eyes
keep changing.  Has anyone else had the same problem, if so please let me
know.  I'm going in next month to have my eye lids lowered they are dragging
down to my feet, and the bottom of my eyes are almost as bad.  When I wake
in the morning I look like a balloon is around my eyes.  My bottom of my eye
is hanging down to my belly.  It's not a pretty sight.  Stay healthy,
greenie

 

In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time,
ho...@ptd.net writes:

Hi all,  I did tell you I'd let you know how my Doctors visit went today.
Well, we did straighten a lot out, about meds. etc. but nothing about the
liver.  She has talked to the other doctors and no one seems to know where
they're going with this one.  They think it's all being caused by the meds
and I'm on so many that could have caused it.  She said it probably started
on Gleevec as they had me on twice the amount of what others were taking,
and then it stopped working after being on it for years and he put me on the
Tasigna.  That's been great and got me into remission, but it also probably
cost me...causing the liver problems.  Well, I take so many drugs that could
have caused it...or the combination of them all and we probably will never
know.  She did tell me that she had talked to the other doctors and Dr.
Gandhi (my Oncologist) is talking with the people who make the drug and see
if their doctors can come up with something.  I'm still off of the Tasigna,
so..when they make up their minds, I will let you know where we're going
from here.  She also addressed my pain and wants me to go back to pain
management and see if injections might help the pain.  They also won't go
through the liver, so it's a good choice for that problem (if it works)
I'm trying to stay positive and work with them on whatever I can.  Just
wanted you all to know where I'm at and will let you know when they make a
decision about what to do with me

 

Hope everyone is fine tonight.  I'm heading to bed as I really need a good
nights sleep.

 

You're always in my thoughts and prayers,

Hugs to all,

Millie

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Re: [CMLHope] Doctors Visit

[Myvety2k]

Hi everyone,   I have a question?  I've been on  Gleevec for over 13 years 
and over the years I have had watery eye's and burred  vision.  Mostly the 
right eye, a week or two will go by then I'll get up  and the left eye will 
be burred but mostly the right eye. It's hard to get  glasses because my eyes 
keep changing.  Has anyone else had the same  problem, if so please let me 
know.  I'm going in next month to have my eye  lids lowered they are 
dragging down to my feet, and the bottom of my eyes are  almost as bad.  When I 
wake in the morning I look like a balloon is  around my eyes.  My bottom of my 
eye is hanging down to my belly.   It's not a pretty sight.  Stay healthy, 
greenie
 
 
In a message dated 7/31/2013 3:38:27 P.M. Eastern Daylight Time,  
ho...@ptd.net writes:

Hi  all,  I did tell you I'd let you know how my Doctors visit went  today. 
 Well, we did straighten a lot out, about meds. etc. but nothing  about the 
liver.  She has talked to the other doctors and no one seems to  know where 
they're going with this one.  They think it's all being caused  by the meds 
and I'm on so many that could have caused it.  She said it  probably 
started on Gleevec as they had me on twice the amount of what  others were 
taking, 
and then it stopped working after being on it for years  and he put me on 
the Tasigna.  That's been great and got me into  remission, but it also 
probably cost me...causing the liver problems.   Well, I take so many drugs 
that 
could have caused it...or the combination of  them all and we probably will 
never know.  She did tell me that she had  talked to the other doctors and 
Dr. Gandhi (my Oncologist) is talking with the  people who make the drug and 
see if their doctors can come up with  something.  I'm still off of the 
Tasigna, so..when they make up their  minds, I will let you know where 
we're 
going from here.  She also  addressed my pain and wants me to go back to 
pain management and see if  injections might help the pain.  They also won't 
go through the liver, so  it's a good choice for that problem (if it 
works)  I'm trying to stay  positive and work with them on whatever I can.  
Just 
wanted you all to  know where I'm at and will let you know when they make a 
decision about what  to do with me
 
Hope  everyone is fine tonight.  I'm heading to bed as I really need a good 
 nights sleep.
 
You're  always in my thoughts and prayers,
Hugs to  all,
Millie
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[CMLHope] Doctors Visit

[C.M. Houtz]

Hi all,  I did tell you I'd let you know how my Doctors visit went today.  
Well, we did straighten a lot out, about meds. etc. but nothing about the 
liver.  She has talked to the other doctors and no one seems to know where 
they're going with this one.  They think it's all being caused by the meds and 
I'm on so many that could have caused it.  She said it probably started on 
Gleevec as they had me on twice the amount of what others were taking, and then 
it stopped working after being on it for years and he put me on the Tasigna.  
That's been great and got me into remission, but it also probably cost 
me...causing the liver problems.  Well, I take so many drugs that could have 
caused it...or the combination of them all and we probably will never know.  
She did tell me that she had talked to the other doctors and Dr. Gandhi (my 
Oncologist) is talking with the people who make the drug and see if their 
doctors can come up with something.  I'm still off of the Tasigna, so..when 
they make up their minds, I will let you know where we're going from here.  She 
also addressed my pain and wants me to go back to pain management and see if 
injections might help the pain.  They also won't go through the liver, so it's 
a good choice for that problem (if it works)  I'm trying to stay positive 
and work with them on whatever I can.  Just wanted you all to know where I'm at 
and will let you know when they make a decision about what to do with me

Hope everyone is fine tonight.  I'm heading to bed as I really need a good 
nights sleep.

You're always in my thoughts and prayers,
Hugs to all,
Millie

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Re: [CMLHope] Re: Just wondering if anyone has gone through unrelated bmt for cml and now has ckd

[icandoallttc]

Hi I am told that remission only means temporary and it can come back anytime. 
A good doctor knows this.  Your case is unbelievable. 
Fight back as hard as you can. Sorry you are under so much stress. 
Many prayers and blessing to you. 
Jeanie

Sent from my iPhone

On Jul 31, 2013, at 1:07 PM, peg  wrote:

> Hi Terri,  I have been on and off of social security disability for many 
> years now, but have never lost my Medicare.  Firstlyif you have a lawyer 
> who isn't certain you can win this..FIND A NEW LAWYER!  This a more than a 
> win-able case.  Also, be absolutely certain a re-determination was filed...it 
> will almost always be denied at the first and 2nd levels.  The rare exception 
> to that is if you meet personally with a social security rep in your local 
> office who decides to become your champion...the key to this is LOOK 
> DISABLED! And also paint a daily worse case senerio picture of your life, 
> otherwise they don't get it...they think what they see is what your life is 
> like.  (sorry about the italics...something glitched!)
> 
> Please see this Medicare Publication which explains how persons needing 
> dialysis and/or transplant are eligible for Medicare: 
> www.medicare.gov/pubs/pdf/10128.pdf.  However, it appears it only covers the 
> dialysis/transplant related treatments and does not kick in until the fourth 
> month of dialysis.  So it is not a perfect solution for you.
> 
> The better direction for full Medicare is to show that you are disabled by 
> this condition and reopen your original disability claim.  But, be careful 
> how your doctor files this...if it is filed as a NEW and separate disability 
> you will have a six month wait for disability and another TWO YEAR wait for 
> Medicare.  However, if you can show that the disability is "the same or 
> related to" your original disability, as in kidney failure due to BMT related 
> chemo for CML, your original claim simply reopens and your disability and 
> Medicare is effective immediately.  This is crucial to getting Medicare 
> quickly!  You are still well within the window of time to reopen your 
> disability without having to start it as a new claim!  See this article...it 
> explains all of this: 
> http://www.disabilitysecrets.com/resources/disability/reopening-a-social-security-disability-claim.h
>  
> 
> Another, but less desirable, option that will buy you a bit of time if you 
> are well enough, is to go back to work...even a little work...people on 
> disability related Medicare, who remain disabled but go back to work, can 
> keep free PART A Medicare for 93 months...after that you have the option of 
> paying for it ($243 a month) indefinately.  Those who are eligible for Part A 
> may also pay for PART B (the part everyone pays for) and are eligible for 
> PART D.  Once you stop working you are allowed to keep paying for your 
> Medicare, and if you refile for disability and everything in the previous 
> paragraph still applies.  But again...not a perfect solution...much better to 
> file to re-open due to "complications" as described in the paragraph above.  
> 
> The fight here is to prove that you remain disabled, working or not, in order 
> to retain benefits.  My feeling is that you want a lawyer and doctor who will 
> fight for that...rather than the idea that you were unfairly target and 
> cancelled due to cost of medication/treatment.  The latter is a much longer 
> and riskier battle.  Talk to several lawyers...they almost all do free 
> consultation.  Tell them you don't want to die fighting this battle and pick 
> the one that you feel will best champion your cause. 
> 
> On a more personal note, there is life while on dialysis.  My mother lived a 
> full active life on dialysis for seven years before succumbing to 
> complications from another illness. Her personal choice was to take the very 
> early morning treatments, so she could nap for a couple of hours after and 
> still have her whole day available.  She even took a cruise that offered 
> onboard treatments.  
> 
> Be strong...fight on!
> peg  
> 
> On Tuesday, July 30, 2013 6:24:59 AM UTC-7, terri wrote:
>> 
>> Hello,
>>  
>> I was diagnosed in May of 2000. Started on interferon and arac. Moved on to 
>> experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission until 
>> 2011. Everything quit working and I had to go with transplant at Johns 
>> Hopkins. They were terrific. I was put on disability. So now I am two years 
>> out and just became eligible for Medicare on June 1. I called to get drug 
>> coverage and they calculated the cost. Two days later I received a cessation 
>> of benefits, stating cml is in remission. I should be able to get a 
>> sedentary stress free job.
>>  
>> In the meantime starting Feb, I developed headaches and high blood pressure. 
>> Creatinine went up. I was referred to a nephrologist with a gfr of  40%. I 
>> had a kidney biopsy showing glomulersclerosis. 65% of my kidneys are dead 
>

Re: [CMLHope] 10 years post-transplant today.

[icandoallttc]

Great news thanks
Jeanie 

Sent from my iPhone

On Jul 31, 2013, at 2:03 PM, glenn fuller  wrote:

> Ten years ago I had  a  Bone Marrow transplant at UCSF medical center.   I 
> have been in complete remission from CML since then.
> 
> 
> -- 
> -- 
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> A support group of http://cmlhope.com
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> 

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[CMLHope] 10 years post-transplant today.

[glenn fuller]

Ten years ago I had  a  Bone Marrow transplant at UCSF medical center.   
I have been in complete remission from CML since then.



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[CMLHope] Re: Just wondering if anyone has gone through unrelated bmt for cml and now has ckd

[peg]

Hi Terri,  I have been on and off of social security disability for many 
years now, but have never lost my Medicare.  Firstlyif you have a 
lawyer who isn't certain you can win this..FIND A NEW LAWYER!  This a more 
than a win-able case.  Also, be absolutely certain a re-determination was 
filed...it will almost always be denied at the first and 2nd levels.  The 
rare exception to that is if you meet personally with a social security rep 
in your local office who decides to become your champion...the key to this 
is LOOK DISABLED! And also paint a daily worse case senerio picture of your 
life, otherwise they don't get it...they think what they see is what your 
life is like.  (sorry about the italics...something glitched!)

Please see this Medicare Publication which explains how persons needing 
dialysis and/or transplant are eligible for Medicare: 
www.*medicare*.gov/pubs/pdf/10128.pdf.  
However, it appears it only covers the dialysis/transplant related 
treatments and does not kick in until the fourth month of dialysis.  So it 
is not a perfect solution for you.

The better direction for full Medicare is to show that you are disabled by 
this condition and *reopen your original disability claim.*  But, be 
careful how your doctor files this...if it is filed as a NEW and separate 
disability you will have a six month wait for disability and another TWO 
YEAR wait for Medicare.  However, if you can show that the disability is *"the 
same or related to"* your original disability, as in kidney failure due to 
BMT related chemo for CML, your original claim simply reopens and your 
disability and Medicare is effective immediately.  This is crucial to 
getting Medicare quickly!  You are still well within the window of time to 
reopen your disability without having to start it as a new claim!  See this 
article...it explains all of this: 
http://www.disabilitysecrets.com/resources/disability/reopening-a-social-security-disability-claim.h
 


Another, but less desirable, option that will buy you a bit of time if you 
are well enough, is to go back to work...even a little work...people on 
disability related Medicare, who remain disabled but go back to work, can 
keep free PART A Medicare for 93 months...after that you have the option of 
paying for it ($243 a month) indefinately.  Those who are eligible for Part 
A may also pay for PART B (the part everyone pays for) and are eligible for 
PART D.  Once you stop working you are allowed to keep paying for your 
Medicare, and if you refile for disability and everything in the previous 
paragraph still applies.  But again...not a perfect solution...much better 
to file to re-open due to "complications" as described in the paragraph 
above.  

The fight here is to prove that you remain disabled, working or not, in 
order to retain benefits.  My feeling is that you want a lawyer and doctor 
who will fight for that...rather than the idea that you were unfairly 
target and cancelled due to cost of medication/treatment.  The latter is a 
much longer and riskier battle.  Talk to several lawyers...they almost all 
do free consultation.  Tell them you don't want to die fighting this battle 
and pick the one that you feel will best champion your cause. 

On a more personal note, there is life while on dialysis.  My mother lived 
a full active life on dialysis for seven years before succumbing to 
complications from another illness. Her personal choice was to take the 
very early morning treatments, so she could nap for a couple of hours after 
and still have her whole day available.  She even took a cruise that 
offered onboard treatments.  

Be strong...fight on!
peg  

On Tuesday, July 30, 2013 6:24:59 AM UTC-7, terri wrote:
>
>  Hello,
>  
> I was diagnosed in May of 2000. Started on interferon and arac. Moved on 
> to experimental drugs, Gleevec, Sprycel, Tasigna. in and out of remission 
> until 2011. Everything quit working and I had to go with transplant at 
> Johns Hopkins. They were terrific. I was put on disability. So now I am two 
> years out and just became eligible for Medicare on June 1. I called to get 
> drug coverage and they calculated the cost. Two days later I received a 
> cessation of benefits, stating cml is in remission. I should be able to get 
> a sedentary stress free job. 
>  
> In the meantime starting Feb, I developed headaches and high blood 
> pressure. Creatinine went up. I was referred to a nephrologist with a gfr 
> of 40%. I had a kidney biopsy showing glomulersclerosis. 65% of my kidneys 
> are dead and dried up, this damage as I understand is irreversible. Since 
> then I have dropped twice to 11%  gfr and currently am at 21% which puts me 
> at stage 4 chronic kidney disease. Severe function loss. 
>  
> Has anyone else dealt with this? I'm looking at poss transplant which they 
> don't even know if I qualify as I am only 2 yrs remission from cml. I still 
> take 800 mg tasigna daily to prevent it from coming back. So my othe