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Gene Therapy Regime Category

Friday, December 18th, 2009

Zometa Infusion #7

Got my 7th Zometa infusion earlier today, Mom was not with me as Dad had his 2nd rotator cuff surgery on Tuesday and she needs to be with him.

* 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!
* Number 4 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad!
* Number 5 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad, just tiring
* Number 6 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad, just tiring

And, today, Number 7 was at North Cypress Ambulatory Infusion Clinic. So far it has not been bad, just tiring.

Telia, one of the nurses, took a couple of photos. Not as many as Mom takes though, which will make it much easier to edit through.

I didn’t cry this time, but I am tired…

I saw Marvin, a gentleman I met last time. He is undergoing chemo for colon cancer. He’s a very nice man and we talked for a bit. He is going through some personal issues related to his cancer and treatment. This disease cancer touches – damages – so many parts of our lives. It sucks.

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 each for the 5 blood tests. Again, out of the fund. My dwindling fund…

Thanks to North Cypress Medical Center, Ambulatory Infusion Therapy Center Nurses for their kindness!

I went to Christine & Rob’s and had dinner and hung out. We played games, then I came home and fixing to go crash.

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

Posted in Gene Therapy Drugs, Gene Therapy Regime, North Cypress Medical Center - Infusion Therapy Center, Nurses, Tests | 2 Comments »

Friday, November 20th, 2009

Zometa Infusion #6 Today

Got my 6th Zometa infusion earlier today, Mom was with me.

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!
Number 4 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad!
Number 5 was at North Cypress Ambulatory Infusion Clinic. Again, it was not that bad, just tiring

And, again, Number 6 was at North Cypress Ambulatory Infusion Clinic, so far is not bad, just tiring.

This time I had Mom take a a photo of the infusion needle – I didn’t look at it though.

I didn’t cry this time, but I am tired… how do people do this for years?

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!

Thanks to North Cypress Medical Center, Ambulatory Infusion Therapy Center Nurses for their kindness!

When we got home, I just kinda hung out cuz I knew my joints and muscles would be aching “soon”…

To overview:

Posted in Gene Therapy Regime, Mom, North Cypress Medical Center - Infusion Therapy Center, Nurses, tired | 1 Comment »

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 »

Saturday, October 17th, 2009

Zometa Infusion #5

Got my 5th Zometa infusion yesterday, Mom was with me.

And, again, Number 5 was at North Cypress Ambulatory Infusion Clinic, again – wasn’t bad.

This time I did NOT look at the infusion needle – since it kinda freaked me out last time.

I cried a little bit… again. Just so tired of this all.

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!

Thanks to North Cypress Medical Center, Ambulatory Infusion Therapy Center Nurses for their kindness!

After the infusion, Mom and I ran to Sam’s for a brief shopping, but then home cuz I wasn’t feeling well.

When we got home, I went to bed cuz I was achy. I didn’t sleep too well, had another weird dream and my joints and muscles are hurting.

Mom took photos at the infusion, I’ll get them posted later.

To overview:

Posted in Gene Therapy Drugs, Gene Therapy Regime, North Cypress Medical Center - Infusion Therapy Center, Special People | 1 Comment »

Friday, October 16th, 2009

Zometa Infusion #5 Today

Having my 5th Zometa infusion later today, around 2pm… Mom is driving in and going with – Yay!

According to the info and past experience, the side effects should be minimal, not like the first one…

Posted in Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime | No Comments »

Tuesday, October 6th, 2009

Burzynski Clinic Monthly Charge – October 2009

Again, I am short on finances, so – like last month – I have to scrape and scrounge to afford to pay for my monthly supply of Sodium Phenylbutyrate (PB) meds from the Burzynski Clinic.

The cost is $4,500.00 for 1 month of Sodium Phenylbutrate, AminoCare A10 and Case Management…

More than twice+ my entire monthly salary for only ONE of five medications that I take to arm me in this fight.

I’ve now gone through the small amount of savings I had,
gone through the donations that have come in.

Can only hope the upcoming fundraiser produces something…
brings in something…
something.

CHARGES TO-DATE:
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

Posted in Antineoplaston Therapy, Burzynski Clinic, Burzynski Clinic Financial Charges, Gene Therapy Drugs, Gene Therapy Regime | 1 Comment »

Monday, October 5th, 2009

The Waiting Game

Today is the start of my one week off of the Xeloda since I was able to get back on – I’m back to the 2 weeks on / 1 week off schedule.

When I first started this drug, it took a few weeks for the side effects to become fully evident, so I’m waiting now…

waiting waiting…

Due to the Xeloda PAP Eligibility Denial, I’ve had to apply to the Texas Health and Human Services to see if I qualify for assistance, which means I would loose ALL my PAP medication benefits if I do, so I’m waiting now…

waiting waiting…

My whole life lately is one big waiting game

not the kinda game I like to play…

Posted in Emotions, Financial Assistance, frustration, Gene Therapy Drug Reactions, Gene Therapy Regime, Patient Assistance Programs (PAP), tired | 2 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 appreciation, Dr. R. Taylor, Gene Therapy Drugs, Gene Therapy Regime, happiness, hope | 5 Comments »

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 »

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