Tag: Zolinza

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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…?

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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, September 9th, 2009

Roller Coaster

I’m Up
……….I’m Down
I’m Up
……….I’m Down
I’m Up…

Finally got an appointment with my PCP this afternoon, had a heart-to-heart with him and…

He wrote the reorders for my PAP meds!  For my Tarceva, Zolinza, Zometa and Xeloda!

I can breath a little easier for a while cuz I don’t have to worry about coming up with the extra $1,500 “Medication Maintenance” for Burzynski Clinic to write the reorders, instead I can focus on other things I need to deal with.

I’m no longer bent over the barrel

I’m Up

I know there’ll be more to come
but for now
for now
for right now…

I can enjoy the coast.

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Posted in appreciation, Dr. R. Taylor, Gene Therapy Drugs, Gene Therapy Regime, happiness, hope | 5 Comments »

Tuesday, September 8th, 2009

Bending Over The Barrel

Since he helped before with my prescription of Zometa, I was presuming, assuming, hoping that my Primary Care Physician (PCP) would be amicable to handling the reorders (Rx refills) for the Tarceva, Zolinza, and Xeloda.  This would eliminate the need to come up with the extra $1,500.00 that Burzynski Clinic is demanding in order to write my prescription refills.  This would have taken a Huge stress off of me.

I had talked with the Drug Company PAP Reps and cleared with all to change the Doctor in charge of Rx reorders (refills) Dr from Burzynski to my PCP.  All was good to go.

Guess I shoulda cleared with my PCP first and not ASS-U-M’ed, cuz I get the message that he is not good to go.  He is not comfortable with writing Rx for cancer meds as he is an Internist and not an Oncologist.

So, I am back to dealing with the $1,500.00 “Medication Management” charge from Burzynski Clinic.

I am currently out of Xeloda, should have restarted today.  But I have no reorder, no refill.

Unless I pay Burzynski Clinic the $1,500.00

They have me over a barrel.

Bending me.

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Posted in anger, Burzynski Clinic Financial Charges, Dr. R. Taylor, frustration, Gene Therapy Drugs, Overload, scared, Stress, tired, venting | 2 Comments »

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.

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

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.

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

Tuesday, September 1st, 2009

Compromise…

So, I have a compromise… of sorts.  HA.

Today I talked with one of the financial people at Burzynski Clinic, and they are “willing” to let me have 2 weeks of Sodium Phenylbutrate for a payment of $2,250.00.

However, they AGAIN want to collect $1,500.00 to “manage” my medications.  ”Managing” means to submit refills for the Tarceva, Xeloda, Zolinza and Zometa – which are all due.

That’s All

Simply Submit The Refills to the drug companies = $1,500.00.

WTHeck??

I JUST informed them that I cannot afford the charge for my meds this month and they wanna ADD AN ADDITIONAL $1,500.00??

Funny thing is, that when I stated that I wanted a copy of this “new policy” in writing, I was told that it’s not in writing, it’s a verbal thing, that all new patients are being advised of the same policy.

W.T.HECK??

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Posted in anger, Burzynski Clinic, Burzynski Clinic Financial Charges, frustration, venting | 1 Comment »

Sunday, July 5th, 2009

Reactions

Time to update on my reactions to the meds, overall…

I have a Spray of tiny rashy bumps across my upper chest, and behind and under my ears…

Dry dry skin…

The tips of my fingers are drying out and splitting…
I am getting pimples on my chin…

Diarrhea still…

My big toenails are separating from the nailbed…

My lower back aches most of the time…

And Tired, so very very tired…

So Lovely, and the epitome of beauty and grace.

Geez.This.Sucks.

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Posted in Dealing with Gene Therapy Drug Reactions, Emotions, frustration, Gene Therapy Drug Reactions, Gene Therapy Drugs, Mom, sadness, scared, tired | 3 Comments »

Sunday, June 14th, 2009

Financial Assistance Stresses

The stresses of trying to acquire Financial Assistance are taking their tolls on me.  I’m not sleeping well – laying awake as images of withheld prescriptions run though my mind.  If I get 2 hours of sleep a night, I’m lucky.  I’m running on empty and am afraid I’m not going to be able to keep it up much longer.

If the cancer doesn’t kill me, all this stress just might…

If you can’t pay, you don’t get the meds, don’t get the Hope.  Hope for a new path, a more humane path… It’s a harsh reality.

Chemo might suck, but at least it’s “affordable”, financially anyway.  Though the toll it takes on the body is priceless – and not in a “priceless - you win” way.  More of a “priceless - killing you slowly and not knowing what future side effects you may experience while not promising that the cancer will not reoccur after you’ve gone through this hell” kinda way.

Getting the Gene Therapy meds directly from the manufacturer eliminates a great deal of cost and stress from my life. And, truthfully – 2 out of 4 is not bad.  But Honestly, I was Hoping to get assistance for all 4.  It would be different if I had insurance, if I Had the money to afford to stay alive – I’m simply doing the best I can to stay alive.  I Want to stay alive.

There is no financial assistance, though, for the PB prescription – that’s a flat $4500/month and is manufactured by the Burzynski-associated pharmacy, and is a proprietary formula.  So, even if I was able to get assistance for a generic brand PB, it would not be the formulation that offered the Burzynski “magic potion”.

And I Want The Magic Potion.  At least Dr. Deleon says it’s in the PB that I’m getting… Those antineoplastons.

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Posted in Burzynski Clinic Doctors, Coping, Financial Assistance, frustration, Gene Therapy Drugs, hope, tired, venting | No Comments »

Tuesday, June 9th, 2009

Zolinza – Financial Assistance Granted!

Today I was notified that I will be receiving assistance with my Zolinza prescription from Merck – that’s a $2217/month break!  This grant is good for one year, and able to be renewed if needed!

YAY!

Doing a little Happy Dance!

THANKS, MERCK!

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Posted in Burzynski Clinic, Financial Assistance, Gene Therapy Drugs, happiness, hope | No Comments »

Tuesday, May 26th, 2009

Drug Financial Assistance – Off And Running

So, I have downloaded, filled out, provided my last year’s tax return gotten Dr Deleon and Dr Weaver to provide their authorizations, DEA No/State License info and a prescription request for each medication.

I have submitted everything needed and talked with reps from each company.

I was told by each one that I was “initially pre-approved”, but that there are no promises.

I am hoping hoping hoping.  Any assistance would be a blessing, but assistance from all four would be be Awesome and a Huge stress-relief which I need to help me beat this monster disease.

Yes, I am Hoping, Hoping, Hoping.

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Posted in Burzynski Clinic, Financial Assistance, Gene Therapy Drugs, hope | No Comments »

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