Sodium Phenylbutrate | Team Denise!

Tag: Sodium Phenylbutrate

Monday, November 9th, 2009

Burzynski Clinic Monthly Charge – November 2009

Again, I am short on finances, so I have to scrape to come up with my payment.

I’ve been saying the charge is for the monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic, but I’ve come to be informed that I am a clinical trial, and as such, do not pay for medication. What I pay for is the case management – for medical case management.

I get the PB meds for “free”.

Ok, still doesn’t change the fact that I am not going to be able to afford this much longer unless something happens.

The cost is $4,500.00 for a month of Case Management which includes the Sodium Phenylbutrate, AminoCare A10…

More than twice+ my entire monthly salary for only ONE of of the five medications that I take in this battle.

The small savings I had are gone.
The donations have dried up.
I am scraping by.
Scraping.

I went through a period of some personal depression which waylaid the fundraiser efforts, so I’ve got nothing there right now.
Need to get back on my feet there.
Shake myself and get going.

CHARGES TO-DATE:
Burzynski Clinic Monthly Charge – October 2009
Burzynski Clinic Monthly Charge – September 2009
Burzynski Clinic Monthly Charge – August 2009
Burzynski Clinic Monthly Charge – July 2009
Burzynski Clinic Monthly Charge – June 2009
Burzynski Clinic Monthly Charge – May 2009

Tags: Aminocare A10, Sodium Phenylbutrate

Posted in Aminocare A10, Antineoplaston Therapy, Burzynski Clinic, Gene Therapy Drugs, Gene Therapy Regime | 1 Comment »

Monday, November 2nd, 2009

Recapping the Side Effects

Its been a while since I’ve talked about the side effects that I experience due to the treatment that I’m taking.
This does Not mean that they have gone away.

Nope… still having them. Don’t wanna “harp” on them cuz everyone has their own problems, and these just happen to be mine at this point in time… No one likes to hear constant complaining.

So I am… just “getting used to them”.
BAM
Getting.Used.To.Them.

Still having diarrhea, in various “stages”.

BAM
I’ve long “gotten used” to it.

I’ve had minor symptoms of Hand-Foot Syndrome, luckily nothing major to-date… still find that immersing my hands in cool water regularly offers a great deal of relief and feels good. Also using a Quality hand cream, like UdderlySmooth, works well.

BAM
“Getting used” to it…

My skin is still dry, but not as bad as before, though it does vary in stages”… I’m not longer using Pond’s Rejuveness on my face, I’m now using Olay Regenerist serum, but am still using Nivea SOS Lip Care for my lips. I am no longer itching so much All Over, but I am still having Some itching. Can’t use Benadryl during the day cuz it knocks me right out.

BAM
I‘m “getting used” to it…

The Traceva / Xeloda rash seems to be kept under control with the Evening Primrose Oil. I do still have a slight small-pimply rash across my chest, behind my ears on my neck and across my lower back, but it is MUCH less bothersome than before.

BAM
I‘m “getting used” to it…

So… let’s just go over the side effects that I am experiencing… these are not all that could happen, these are “just” the ones that I am currently dealing with…

From the Xeloda:
* Diarrhea
* Stomatitis (mouth and throat sores)
* Abdominal (stomach area) pain
* Hand-and-Foot syndrome (pain, swelling or redness of your hands or feet that prevents normal activity)
* Dry, itchy or discolored skin
* Rash
* Nail problems
* Tiredness
* Weakness
* Dizziness
* Headache
* Pain (such as chest, back, joint, and muscle)
* Difficulty sleeping

BAM
I‘m “getting used” to it…

From the Zolinza
* Stomach and intestinal problems, including diarrhea, nausea, vomiting, loss of appetite, constipation and weight loss
* Tiredness
* Dizziness
* Headache
* Changes in the way things taste and dry mouth
* Muscle aches
* Cough
* Itching

BAM
I‘m “getting used” to it…

From the Tarceva
* Fatigue
* Rash
* Diarrhea
* Mood or mental changes
* Muscle pain or twitching
* Nervousness or restlessness
* Lower back, side, or stomach pain
* Unusual tiredness or weakness
* Joint pain
* Unusual bruising
* Irritability
* Muscle cramps

BAM
I‘m “getting used” to it…

from the Sodium Phenylbutrate :
* Mood or mental changes
* Muscle pain or twitching
* Nervousness or restlessness
* Lower back, side, or stomach pain
* Unusual tiredness or weakness
* Chills; fever
* Sore throat
* Unusual bleeding or bruising
* Dizziness
* Dryness of mouth
* Fast, slow, or irregular heartbeat
* Increased thirst
* Irritability
* Muscle cramps
* Abdominal or stomach pain
* Headache
* Depression
* Skin rash

BAM
I‘m “getting used” to it…

from the Zometa:
* Fatigue
* Bone pain
* Headache
* Shortness of breath
* Joint, and muscle pain

Major BAM from 5 sources…
I‘m “getting used” to it…

I‘m “getting used” to it…?

Tags: Sodium Phenylbutrate, Tarceva, Xeloda, Zolinza, Zometa

Posted in Antineoplaston Therapy, Dealing with Gene Therapy Drug Reactions, frustration, Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime, tired | 1 Comment »

Wednesday, October 28th, 2009

Gamer Geek Blog Reader

So how Totally Cool is it to run into someone who has been reading your blog? Someone that you don’t know… Not Family, not Friend - a stranger who is reading!

This happened to me yesterday, at the Infusion Center, while getting my port-a-cath checked out.

I was waiting, and a Gal and (who I presumed was) her Hubby come in. Turns out that Mrs. Gal is also a breast cancer Warrior.

Unwilling members of the club we are.

We talk a bit, the 3 of us. About our treatments, about chemo, about my choice of Burzynski, about Sodium Phenylbutrate (aka PB). Mrs. Gal is on PB for an unrelated medical condition – she takes 40 tabs per day when needed. FOURTY TABS! OMG! The 24 I take daily beat me down, just Beat.Me.Right.Down. I Can’t Even Imagine 40! Maybe it doesn’t affect her like it does me… Maybe its different cuz of the different medical necessity? Or maybe she is in a whole heckuvalotta more than I am…

We continued to talk. I got the impression she would have preferred not to, but she was unfortunate to be sitting close to me and I reach out to everyone.

My Bad Habit for those who are not so chatty.

Anyway…

Maybe the nurse saw something and wanted to “rescue” Mrs. Gal , or maybe she didn’t like us talking about unconventional treatments, maybe it was something else entirely. The nurse decides to place me in a “private room” for my port access. Before I leave, I give my email to Hubby and tell Mrs. Gal that I am doing so, so that we can keep in touch. Please keep in touch.

All goes well and as I am leaving

Mrs. Gal and Hubby are also leaving.

Hubby tells me that he has been reading about me.
Huh?

Yes, reading about me since June, but didn’t recognize me cuz my hair has been growing back.
Since June?
Huh?

Yes, he had read my Geeklist posting on BoardgameGeek (cuz boardgaming is my “passion”).

Wow – how Awesome! I felt A Mile High on That one!

And they left. I think her name was Elizabeth, but I didn’t ask his. Wish I knew.

Y’all out there?

Tags: BoardGameGeek, boardgames, Sodium Phenylbutrate

Posted in Antineoplaston Therapy, Burzynski Clinic, Gene Therapy Drugs, Getting The Word Out, Patient-Friends | No Comments »

Wednesday, September 9th, 2009

No Surprise

Yesterday, I spoke with Dr. Khan regarding my reaction to restarting the PB. He was not surprised, which makes me feel “better” cuz I was kinda worried about how intense the reaction was. He told me that I should not have just started back up with the optimum dosage, I should have built back up as initially. Good to know.

I do feel Much better this morning. The headache is pretty much gone and none of the severe muscle and joint pain and total fatigue that I’ve been having since restarting last weekend, just the “normal” muscle and joint aching and basic fatigue as before… normal… ha…

Tags: Sodium Phenylbutrate

Posted in Dr. A. Khan, Gene Therapy Drug Reactions, Gene Therapy Drugs | 1 Comment »

Monday, September 7th, 2009

Don’t Tell Me

Yes, I know that everyone has pain in their lives
and not everyone complains.

Every day I take meds
to save my life
meds that kick my butt
and will continue to do so for months to come
meds that bring pain, exhaustion
a plethora of other unpleasant and debilitating symptoms
and I am rarely allowed to take anything for relief
because relief will possibility,
probably,
interfere with the meds
that are supposed to save my life.
Most people with pain
are able to get relief of some sort
I am not.
For the most part
I’m silent
I don’t mention
the pain
I don’t mention
the extent
I don’t mention it
at work
I don’t mention it
in my daily life.
So when I do complain
to my Family
to my Friends
within the supposed security
of those who I should feel safe around
to those I should feel safe to open to
when I do complain
that I hurt
when I do complain
how bad I hurt
don’t tell me
your pain
don’t tell me
that everyone has pain
don’t tell me
that others don’t complain
don’t tell me
to get over it
don’t tell me
to deal with it.
Just try to be a little
sympathetic
or at least
Fake it.

Tags: complaining, Sodium Phenylbutrate, Tarceva, Xeloda, Zolinza, Zometa

Posted in anger, Coping, Dealing with Gene Therapy Drug Reactions, frustration, Gene Therapy Drug Reactions, scared, tired, venting | 1 Comment »

Monday, September 7th, 2009

Back on PB – for now

I was Finally able to pick up a portion of Sodium Phenylbutyrate (PB) on Friday. Was Supposed to pick it up on Thursday, but the Clinic got the info mixed up and then there was some confusion on their end, so I couldn’t pick up the entire month, but will be able to pick up the rest so this coming Wednesday…

Had to pay for what I did pick up and that was 1/2 month at a cost of $2,250.00.

Since I was traveling to Corpus to visit my Folks for the Labor Day holiday, I didn’t want to re-start the meds while I would be on the road, so I started them on Saturday.

I did Not anticipate the reaction.

When I initially started taking the PB (back in May), I took increments of pills until I reached my dosage of 24/daily (6 tabs @ 4x daily, then to 8 tabs @ 3x daily). When I restarted, I didn’t consider this and simply took my 24 dosage as usual.

By Sunday, I was pretty much down, and spent all Sunday in bed.

It didn’t help matters any that I had words with my Mom, except to be able to stay in bed and away from her.

The PB kicked my butt. I was exhausted and ached all over. Simple movement was painful and my head pounded like crazy. My right knee was so tight, I could hardly bend it; all my joints screamed when I moved. Standing up was excruciating. I couldn’t even get up for water.

My ride home today (Monday) was miserable for several reasons, but the reaction was a large part of it. Every bump, every swerve, every motion of the car tore through me.

Thank goodness I was able to sleep much of the way. I had no choice.

I got home, and went right to bed.

Got up a little while ago for the bathroom and feed the Pups.

So now, I’m back to bed.

and waiting for the inevitable diarrhea…

Tags: Sodium Phenylbutrate

Posted in Family, frustration, Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime, Mom, sadness, tired | 3 Comments »

Wednesday, September 2nd, 2009

Test Results – Tumor Markers #4

I COULDN’T WAIT TIL THIS EVENING TO POST THIS!!!

Last Friday, I had the bloodwork drawn to track my tumor markers. It was draw #4. I’ve been having Very Good Results…

I now have the results of the August 27 draw… this draw was for both the monthly tests (most specifically my CEA Tumor Markers) AND for the 3-month tests, which include my HER2 and EGFR Numbers…

On April 15, my baseline CEA tumor markers were 63.1 ng/mL (nanograms per milliliter)

On June 03, my 2nd draw CEA tumor markers were 35.9 ng/mL

On July 03, my 3rd draw CEA tumor markers were 12.8 ng/mL

My CEA numbers from the August 27 draw are 3.9 ng/mL

3-POINT-FREAKING-9!!!!!!

Norm is 0.0 – 3.0 ng/mL; levels higher than 3 ng/mL are not considered normal.

3.9 is Pretty Freaking Close To Normal!!

The numbers Just Keep Dropping! I can’t help but be excited!! Still I wish I was confident with just how much this meant, but this (CEA: The Test) has answered Some questions…

I’m Still hoping that this all means Something Good… Please mean Something Good…

My Other Numbers as of Aug 27 2009 blood test results:
CA-125: 6 U/mL (Reference @ 0-35) – an 11 point DECREASE – down from 15 U/mL from July’s draw
CA 15-3: 16 U/mL (Reference @ <32) – a 17 point DECREASE – down from 33 U/mL from July’s draw
CA 27.29 (see CA15-3 above): 28 U/mL (Reference @ <38) – a 12 point DECREASE – down from 40 U/mL from July’s draw

I’m thinking those numbers are looking Pretty Dang Good!

More Numbers from the tests I take every 3 months:
I’m not sure about what are good levels here, but this is what I’ve got…

EGFR (Epidermal Growth Factor Receptor)
From August 2009 draw – 39
From April 2009 draw – 86
A drop of 47

HER2 (Human Epidermal Growth Factor Receptor)
From April 2009 draw – 2.8
From August 2009 draw – 8.0
An increase of 5.2, is this good…? I’m thinking an increase can’t be good… and such a large increase, more than double…? I DO know that I’m HER2 negative, and that’s a good thing to be. But can you go from negative to positive…? Would that increase be an indication?

Still vizualizing my Dragons with their light-saber wielding Riders!

Rich – I know that you’re a nurse…
Molli – you work for MD Anderson..
Either of y’all have any input / insight…?
PLEASE…?

What Is HER2, How Is It Tested, And Is It Tested On Invasive And Non-Invasive Breast Cancer?

Is your breast cancer HER2+? Further your understanding of HER2.

Read about HER2 and the importance of knowing the tumor’s HER2 status.

Tags: Sodium Phenylbutrate, Tarceva, Tumor Markers, Xeloda, Zolinza, Zometa

Posted in Emotions, excitement, happiness, hope, joy, Results, Tests | 35 Comments »

Monday, August 31st, 2009

Stalled

Last night (Sunday) was my last dose of Sodium Phenylbutrate… my last 8 pills from my August supply. And my last dose of AmnioCare A10 (which appears to be a form of the Antineoplaston Therapy)… my last 2 pills from my August supply. The last of my supply…

I haven’t been able to pay for my September supply yet. I’m trying to get the money for September, but until I do, I’ll have to forego part of my treatment. That’s kinda scary, expecially since I just had bloodwork done and am waiting the results.

Especially scary cuz “It has been shown (Samid 1992) that Phenylbutyrate arrests tumor growth and induces differentiation of pre-malignant and malignant cells through this non-toxic mechanism.” and “Phenylbutyrate has been shown to be a non-toxic differentiation inducer, promoting maturation of various types of malignant cells. Maturation makes the cells less aggressive, causing them to cease dividing and eventually die.“

Let’s see that again… “makes the cells less aggressive, causing them to cease dividing and eventually die.“

Yes – DIE.

Scary cuz I will have to go without until I can pay for September’s supply.

And after September…

October…
November
December…

I’ve said it before…

CANCER SUCKS.

AND SO DOES THE COST OF TREATMENT.

Tags: Finances, Sodium Phenylbutrate

Posted in Emotions, Finances, frustration, Gene Therapy Drugs, overwhelming, scared, venting | 3 Comments »

Monday, August 17th, 2009

Exhaustion

I am So Exhausted. So Freaking Exhausted

Seems everything I need to do is a effort… Every.Simple.Thing.

Simply waking up and getting going in the morning just wears me out. By the time I take my shower, put on my make-up, get dressed, feed the cat and dogs, take all my pills and eat breakfast, I am ready to collapse. Walking down the stairs wears me out.

I just want someone to hold me and tell me it’s gonna be alright… But that’s not gonna happen anytime soon.

I am physically, emotionally and spiritually exhausted.

The physical part is due to the drugs that I am taking to fight this cancer, this beast cancer. The emotional and spiritual part… well, that’s due to everything else associated with the beast.

The drugs specifically are Tarceva, Zolinza, Xeloda and Sodium Phenylbutrate. Ok, so ALL of the drugs that I’m taking daily have “weakness”, “tired” as a side effect. Lovely.

A lot of my exhaustion is due to the Sodium Phenylbutrate cuz of the depletion of the Glutamine in my body. While Glutamine deficiency is rare, when it’s being purposefully depleted from your body the results are very much felt. Plus the fact that I’m supposed to be following a low protein diet (which I’m doing my best at) does not help with alleviating the symptoms…

I am just overwhelmingly exhausted.

But I have to keep going.

Occasionally I just want to chow down on a big, thick, rare steak.
Continuously I just want to crawl back in bed.
~sigh~

Tags: Sodium Phenylbutrate

Posted in Coping, Dealing with Gene Therapy Drug Reactions, Emotions, frustration, Gene Therapy Drug Reactions, Gene Therapy Drugs, loneliness, overwhelming, sadness, scared, tired | 5 Comments »