Burzynski Clinic Category

Tuesday, January 26th, 2010

Test Results – Tumor Markers #9

My PCP’s office called with my my lab results…

Last Friday (Jan 22 2010), I had the bloodwork drawn to track my tumor markers. It was draw #9. I’ve been having pretty good results to-date, some ups some downs, some increases, some decreases – all within acceptable margins…

However, I’ve had a lot of unexplained aches and pains, especially breast and bone pain, and been battling stress and depression which I was – am – sure effected my health. So I’ve been Very scared of these results…

Very Scared.

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers).

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200’s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers were 3.2 ng/mL
* November 20, my 7th CEA tumor markers were 2.7 ng/mL
* December 18, my 8th CEA tumor markers are 2.8 ng/mL

* January 22, my 9th CEA tumor markers are 3.1 ng/mL
This is a .3 INCREASE from last month, and puts me just above the normal range…

Dr. Khan has reassured me that this small increase is nothing to be concerned about, so I will TRY not to worry… Yah, right.

As always, I’m unsure, but this (CEA: The Test) continues to answer Some of my questions…

My Other Numbers as of January 22 2010 blood test results:

* CA-125: 12 U/mL (Reference @ 0-35)
a 2 point DECREASE – down from 14 U/mL from December’s draw… I am well within normal range.

* CA 15-3: 16 U/mL (Reference @ <32)
a 4 point DECREASE – down from from 20 U/mL from December’s draw; I’m well within the normal range.

* CA 27.29 (see CA15-3 above): 27 U/mL (Reference @ <38)
a 4 point DECREASE – down from 31 U/mL from November’s draw. This decrease makes me very happy!

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

With all the aches and pains I’ve been having
With all the stress and depression I’ve been fighting
I’ve been Very Very worried…
But these results help ease my mind.

Taking a breath
Relaxing
Destressing
Its all good…
It Will Be Good.

Visualizing my Dragons
My Warrior Dragons
Burning

Never Stopping.

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Sunday, January 24th, 2010

Lessening

I woke this morning
with no headache
and no numbness
Yay.

Though my brain feels “sore”

My muscles and joints
don’t hurt as bad
nor does my breast
though there is still pain there.
still…

I am working on my eBay today…

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Thursday, January 14th, 2010

BURZYNSKI Article: Life Extension Magazine. May 2004

This is an interesting read…

AN INTERVIEW WITH DR. STANISLAW BURZYNSKI

Unlocking the Mystery
of Antineoplastons

A Natural Anticancer Agent

by Terri Mitchell

The following statement concerns me, I think I need to see if I can get some type of response to it from the Drs.
Do I have the p53 tumor suppressor gene?
This article was printed in 2004, so Hopefully things have changed, though in the world of medical advances, it seems that years are mere days…

The use of antineoplastons to treat breast cancer has not been as successful as hoped. Dr. Burzynski believes this is because the antineoplastons currently in use target the p53 tumor suppressor gene, a gene not frequently associated with this type of cancer.

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Sunday, January 10th, 2010

Weather

It has been So Dang Cold here, I can barely function.

I went out this afternoon, and walking to and from the Explorer left me chilled deep.

The cold weather didn’t used to bother me so much, I actually used to enjoy it. But since the chemo, and this current treatment, I feel the cold just biting into my body.

Can’t wait til it warms up some…

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Friday, January 8th, 2010

Xeloda – Fluxxed Again

Just when I thought the issues with Xeloda were resolved, I am told that my prescription is on hold until I provide signed acknowledgment of notification of a change in the Roche Foundation.

In March 2009, Roche and Genentech became one company and this led to some changes. As of December 31 2009, Roche ceased to distribute free medicine. Starting January 01 2010, I have the option to be supported by the Genentech Access To Care Foundation, which will provide access to Roche products previously provided by the Roche Foundation. This notification was mailed out on January 04 2010.

In order to transition with no interruption in my medical treatments, I need to sign and return the GATCF Patient Authorization and Notice of Release of Information (PAN) form that will be provided to me. They are supposed to have included a self-address, stamped envelope for convenience. That was very nice consideration.

Thankfully, the prescription was extended for this month, and these limits won’t be effective til next month. As soon as I receive the forms, I will fill them out and return them!

I hope this change does not effect my Genentech PAP for Tarceva and I can’t afford to loose my Xeloda PAP either.

A state of constant flux and I’m back on the roller coaster

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Monday, January 4th, 2010

Lip Service

Side effects – drying and splitting

First it was my fingers – dry and splitting

Then my toes and heels – dry and splitting

bandages, neosporin
and
slathering with creams
Udderly_Smooth
Eucerin Calming creme
Curél Ultra Healing

when one stops working
switch to the other
constant rotation

Now…

my lips – dry and splitting
raw
clown mouth

neosporin
and
slathering with balm
Burt’s Bees
Chapstick Naturals
Blistex

when one stops working
switch to the other
constant rotation

each day is
an adventure
more adventure.

My poor lips...

My poor lips...

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Tuesday, December 29th, 2009

Radio Interview, Its Your Health – Done!

The interview on “Its Your Health” radio was this morning.
A few minutes ago.
Wow.
The time flew
and there was so much I didn’t get to say.

Information that I wanted to share.
Information about my situation.
Information that I have gone through
Information that may help others.
.

My monthly medical bills – depending on what tests I need done – are between $15,000 and $17,000.
Yes – Per.Month.
The cost for the 5 medications that I am on is almost $15,000 per month
Monthly infusion and blood tests – tack on an additional $400.
PET / CT scan adds $1,200 every 3 months.

With the PAPs (Patient Assistance Programs) that I am qualified for, my monthly medicine bill goes “down” to $4,500, plus the cost of the tests.

Not easy for a currently unemployed temp secretary who is doing it all alone…

I really wanted to touch on the PAPs – Patient Assistance Programs. These are SO Important!! These are “offered” by the drug companies for people in need – that would be me. If you are in need, PLEASE contact the drug company and ask if there is a Patient Assistance Program that you would qualify for. Most drugs have some form of a PAP.

When you go for appointments or tests, Be Sure to tell them your story – that you have no insurance, that your insurance doesn’t cover this or that or whatever. Most medical facilities offer discount rates for people in need.

As I said – now is Not the time for pride.
Ask for help.

There are people out there who WILL help you.
People who Want to help.
Regardless if you are a precious toddler, a young adult, or – like me – an “old fat gal”.
People Will Help.

I am here, asking for help.

I have gone through my savings and the small inheritance I got from my Grandfather ($30,000) to purchase a home. My own home. My first home.
Gone.

Now I am dependent on fundraisers and donations.
The kindness of Family, Friends and Strangers.

The kindness of people helping.

Each month is a struggle to pay for my meds.
Each month is terror that I will not be able to afford to continue to fight this battle.
I do Not want to die.
Not yet…

Thank You So Very Much to Lisa Davis! and “Its Your Health” radio for giving me the opportunity to get my info out there!!

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Wednesday, December 23rd, 2009

UPDATE #3: Radio Interview – Its Your Health

INTERVIEW UPDATE #3: Latest update to last update from Lisa Davis of “Its Your Health Radio“:

“No shows tomorrow (Dec 24) due to technical difficulties. Sorry again Denise. Everyone have a great holiday!”

Soooo… my radio interview is postponed again ~sigh~
HOPING that my time will come.
Will be Grateful when it does!

TeamDenise…

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Wednesday, December 23rd, 2009

Test Results – Tumor Markers #8

My PCP’s office faxed my lab results…

Last Friday (Dec 18 2009), I had the bloodwork drawn to track my tumor markers. It was draw #8. I’ve been having pretty good results to-date, some ups some downs, some increases that I am concerned about…

This blood draw was for the monthly tests (most specifically my CEA Tumor Markers).

* April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter). This is High, as Norm is 0.0-3.0 ng/mL.
I honestly don’t know how high “really high” is, but – in my internet searching – I read one gal talk about the mid-200’s, so I guess my high is not That high, but It’s High To me.
* June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL
* July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL
* August 27, my 4th draw CEA tumor markers were 3.9 ng/mL
* September 18, my 5th draw CEA tumor markers were 3.3 ng/mL
* October 16, my 6th CEA tumor markers were 3.2 ng/mL
* November 20, my 7th CEA tumor markers were 2.7 ng/mL
* December 18, my 8th CEA tumor markers are 2.8 ng/mL
This is a .1 INCREASE from last month, but still has me within the Normal range.

As always, I’m unsure, but this (CEA: The Test) continues to answer Some of my questions…

Still hoping that this all means Something Good… I can’t help but be cautious cuz the other shoe always falls for me. Always.

My Other Numbers as of December 18 2009 blood test results:

* CA-125: 14 U/mL (Reference @ 0-35)
a 3 point INCREASE – up from 11 U/mL from November’s draw… I’m not happy, but am still well within the normal range, in fact is very low normal range. But another increase Does worry me.

* CA 15-3: 20 U/mL (Reference @ <32)
a 1 point DECREASE – down from from 21 U/mL from November’s draw; I’m still within the normal range.

* CA 27.29 (see CA15-3 above): 31 U/mL (Reference @ <38)
a 4 point INCREASE – up from 27 U/mL from November’s draw. These increases scare me, though I am still within (high) normal range.

The CA 27.29 test is used to monitor your:

  • Response to treatment
  • Status of your cancer
  • Possibility of early recurrence

Try and relax
Don’t stress the body
Don’t stress the mind
Don’t think about not having a job, Mr. Sack, the total and complete devastation of all my hopes and dreams.
Just don’t think about it all.
Yah, right.

I am so scared. Never stop being scared. Never stop reaching out… to find… no one

Visualizing my Dragons
my Warrior Dragons
Please don’t stop burning.

Please.Don’t.Stop.

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Wednesday, December 23rd, 2009

UPDATE #2: Radio Interview – Its Your Health

The rescheduled interview on “Its Your Health” radio has been rescheduled to Dec 24, 9:50-10:10am EST.

That’s tomorrow.
TeamDenise!

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