Zometa | Team Denise!

Tag: Zometa

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, Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime, frustration, tired | 1 Comment »

Saturday, September 19th, 2009

Zometa Infusion #4

Got my 4th Zometa infusion yesterday.

Number 1 was at Burzynski Clinic. It hit me hard…

Number 2 was at North Cypress Ambulatory Infusion Clinic. Thank goodness the 2nd infusion was not that bad…

Number 3 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad!

And, again, Number 4 was at North Cypress Ambulatory Infusion Clinic, again – wasn’t bad. Though I did actually see the infusion needle for the first time – I mean Really Looked At It… and That Sucker Is BIG. I’m talking Horse Sticker Big. B.I.G. At least that’s how it looked to me… and I kinda froze up for a minute and they had to stop and wait for me to compose myself. Not a ~Total~ Freak Out, but I was a taken back by the needle and turned into a weenie. And I cried… again

Reminder to self – DON’T Look At That Needle!!

Do.Not.Look.

To overview:

ZOMETA is (also) used to treat patients with other cancers—including breast‚ lung and prostate cancer—that have spread to the bones‚ a process called bone metastasis. When cancer has spread to the bone‚ treatment with ZOMETA helps to protect bones and may reduce or delay such complications as:
* Bone fracture
* Need for radiation and/or surgery to bone
* Spinal cord compression

I also had the blood drawn for my monthly lab work, my tumor markers… Should get those results early next week. HOPING they continue to show improvement!

The TOTAL of my charges – receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port AND the necessary bloodwork to access my levels and tumor markers was $320.00. Plus $15 for each of the 5 blood tests.

Awesome…

And Once Again, they provided a nice lunch!!

Thanks to North Cypress Medical Center Ambulatory Infusion Therapy Center!

We met Christine & Rob at Taipei for dinner. Mom and I split a Spider Roll, California Roll, Crunchy Roll and Chicken Lettuce Package – Yum and the California Roll and Crunchy Roll were on Special for 99cents each!

Then I Pushed myself some more and we went to Christine & Rob’s home and played a couple of boardgames (my weakness). We played Gemlok and Rummibuk. Yes, boardgames are my passion…

When we got home, I Totally crashed – I was Exhausted and kinda achy. But I slept well – only waking up once that I remember, which is a Big Difference from the typically 3 – 4 times per night! A Welcome Difference.

Mom took too many photos…

[Show as slideshow]

[View with PicLens]

Tags: Infusion, Zometa

Posted in Gene Therapy Drugs | 5 Comments »

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.

Tags: Finances, Patient Assistance Programs, Tarceva, Xeloda, Zolinza, Zometa

Posted in Dr. R. Taylor, Gene Therapy Drugs, Gene Therapy Regime, appreciation, 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.

Tags: Overload, Stress, Tarceva, Xeloda, Zolinza, Zometa

Posted in Burzynski Clinic Financial Charges, Dr. R. Taylor, Gene Therapy Drugs, Overload, Stress, anger, frustration, scared, 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.

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

Posted in Coping, Dealing with Gene Therapy Drug Reactions, Gene Therapy Drug Reactions, anger, frustration, 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.

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

Posted in Emotions, Results, Tests, excitement, happiness, hope, joy | 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??

Tags: Finances, Xeloda, Zolinza, Zometa

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

Tuesday, August 25th, 2009

September Meds

Its time to get my September meds from Burzynski Clinic, and I’m afraid that I don’t have the finances to cover the monthly cost.

August was a big hit to my funds, took $6,490.00 to keep going… first the cost of my monthly meds ($4,620), the PET/CT scan ($1,200), the Bone Scan ($360), the Zometa infusion ($310) and the monthly blood tests coming up (about $120).

And my lack of fundraising has also stalled things. It’s just so difficult to try and do it all, all alone, especially when the medications make me So.Very.Tired…
so difficult, so disheartening, so tiring…
just.so.totally.overwhelming.

I have 2 days worth of meds left.
I need to come up with funds for September…

It’s not easy trying to Survive.

Tags: Blood Tests, Bone Scan, Finances, PET/CT Scan, Zometa

Posted in Burzynski Clinic, Burzynski Clinic Financial Charges, Coping, Emotions, despair, frustration, loneliness, scared, tired, venting | 1 Comment »

Sunday, August 16th, 2009

Reaction – Zometa #3

While #1 was a “Bitch“, and #2 was more like simple achiness, Zometa Infusion #3 was a comparative “walk in the park”… Nothing more than general fatigue and some minor minor aches. I was actually able to get out yesterday (Saturday) and run some errands with Mom, though it was really too much and I came home Totally Exhausted after a couple of hours.

But… YAY!

Let’s hope it’s similarly “easy” each time…

YAY!

Tags: Zometa

Posted in Dealing with Gene Therapy Drug Reactions, Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime | 2 Comments »

Friday, August 14th, 2009

Zometa Infusion #3

Got my 3rd Zometa infusion today.

Number 1 was at Burzynski Clinic. It hit me hard…

Number 2 was at North Cypress Ambulatory Infusion Clinic. Thank goodness the 2nd infusion was not that bad…

Number 3 – today – was also at North Cypress Ambulatory Infusion Clinic. Hoping that it is also, not bad.

I need Zometa, need to be able to tolerate it.

To overview:

I also had some blood drawn for my monthly lab work, my tumor markers…

Again, the TOTAL of my charges – receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port AND the necessary bloodwork to access my levels and tumor markers was $315.00. Plus $15 for each of the 7 blood tests (the extra tests done every 3rd month) – at a Huge savings for me!!

Awesome…

And Again, they provided a nice lunch!!

Again – Thanks to North Cypress Medical Center Ambulatory Infusion Therapy Center!

Mom took phots, I’ll get them posted later.

Now.. I am tired, very tired… and I’m gonna get to bed.

Tags: Infusion, Zometa

Posted in Gene Therapy Drugs, Gene Therapy Regime, scared | 8 Comments »

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