Gene Therapy Drug Reactions | Team Denise!

Gene Therapy Drug Reactions Category

Monday, September 21st, 2009

Back on Xeloda Again

I’m back on Xeloda again
Back where I’m trying to mend
Where my body will be ripped
From the cancer that has gripped
Back on Xeloda again

Whoopi-ty-aye-oh
Rockin’ to and fro
Back on Xeloda again
Whoopi-ty-aye-yay
I get cancer out of my way
Back on Xeloda again

Ok, so I’m not a lyricist, no offense to Mr. Gene Autry.

After almost 4 weeks, I am back on Xeloda again…
Back on a very important medication in my battle…

4 weeks… almost a month… a month of lost time…

Lost time due to the attempted $1,500.00 “Medication Maintenance” fee from Burzynski Clinic.
Lost time due to to getting my PCP to write the drug refills for me, so that I can circumvent the “Medication Maintenance” fee.

Lost time…

Now…

I will again deal with more side effects, in addition to the side effects of the other drugs I’m taking (Tarceva, Zolinza, Zometa and Sodium Phenylbutyrate).

Again, adding Xeloda side effects…

The (most common) Xeloda side effects -

* Diarrhea, nausea, vomiting, mouth and throat sores, abdominal pain, upset stomach, constipation, loss of appetite, and dehydration
* pain, swelling or redness of hands or feet that prevents normal activity, dry, itchy or discolored skin, rash, nail problems, and hair loss
* Tiredness, weakness, dizziness, headache, fever, pain (such as chest, back, joint, and muscle), difficulty sleeping, and taste problems

Happy Happy Joy Joy.

In Addition, I need to get the situation with Roche PAP cleared up – regarding the letter I got from them stating that they felt I should have pursued another resource for financial assistance before I went to them.

The letter advising me to contact Texas Health and Human Resources requesting assistance.

The letter telling me that if I am not approved, then Roche will reconsider my situation.

I have 30 days to do this. After 30 days, my drug assistance for Xeloda will end.

but for now…

I’m back on Xeloda again…

Tags: Xeloda

Posted in Burzynski Clinic, Burzynski Clinic Financial Charges, Dealing with Gene Therapy Drug Reactions, Dr. R. Taylor, Gene Therapy Drugs | 2 Comments »

Wednesday, September 9th, 2009

Tarceva Rash

Several weeks ago, I re-introduced Evening Primrose Oil back into my daily vit/min/herb regime. I used to take it for breast health due to my Fibro Cystic Breast Disease, which I was diagnosed with when I was 16yrs. When I was diagnosed with the breast cancer and went on chemo, I was advised to stop all my vit/min/herb supplements. And when I stopped chemo, I forgot to get back on the Evening Primrose Oil.

And now something that I’ve just realized as a result of a stumbled upon site (cinco vidas)… one of the meds I take, Tarceva, has a side effect of a rash – this I knew and was experiencing (ugh). However, since I started back on the Evening Primrose Oil, the rash has reduced tremendously. I do mean HUGELY.

Seems that Evening Primrose Oil is a suggested relief for the Tarceva Rash – according to cinco vidas blog…

The blog, cinco vidas, states that this rash can be “devastating” to some people. Not me. Cuz I was told when I started on this treatment path, that the worse the rash, the better the drug was working. So, bring on the rash! Cinco vidas has a link to an article on Your Cancer Today which also mentions this fact – Rash means cancer drug Tarceva is working…

I checked with Genentech (drug manufacturer), and they had no medical issues with taking the oil with the Tarceva., so cool! Some Reeeeeeally good info there at cinco vidas!

Woooooooo!

Tags: Tarceva

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

Saturday, August 22nd, 2009

It Just Can’t Be So…

I recently stumbled across the blog of another patient of Burzynski Clinic – Margaret Manning of Arizona.

This lucky woman is seemingly Without One Complaint about side effects or reactions to her meds.

WTHeck??
Is she not having Any symptoms?? Just “good results”?

It’s a little disheartening to me, since I’m dealing with gas, cramps, diaherra, acne, body rash, muscle and joint pain, balance issues, fatigue, exhaustion, insomnia, mouth and tongue sores, splitting of the skin of my fingers and toes and lips, nails separating from nailbed, etc etc etc.

All she seems to need to worry about is finances, which I can Totally relate to. Even so, she has had two $10,000 donations and one $5,000 donation. Wow… That’s Awesome.

She has a wonderful – and irritating – positive attitude about everything. And I don’t mean “irritating” in that I wish her ill – Not At All!! “Irritating” in that she has all this support and can be so chipper…Yes, I do try to stay positive, but I would be lying if I didn’t say that it’s difficult. Especially since I am alone in this.

She is a fellow Warrior, she is a fellow Burzynski patient and I wish her The Best of results! I guess I’m just a bit jealous of her ease…

Guess I really should stop whining now…

Tags: Margaret Manning

Posted in Dealing with Gene Therapy Drug Reactions, frustration, Gene Therapy Drug Reactions, Uncategorized | 4 Comments »

Tuesday, August 18th, 2009

Xeloda – Week On

Week On, Week Off, week on, week off… It is all just becoming a blur.

This is my “week on” Xeloda – the oral chemo pill that I’m on.

I used to be 2 weeks on, 1 week off, but due to my toenails separating from the nailbeds, Dr. Deleon decided to change my regime to one on, one off… we’ll see how that goes. Though the Xeloda Nurse (from Roche) who calls every week to check on me, tells me that the nails will most probably fall off. Oh Yay.

Wish the cancer would just fall off *LOL*

Anyway…

Week On.

Welcome back to (more) diaherria, cramps, gas…

Oh Yay.

Gotta keep the mindset
that every time I POOP
there GO more CANCER cells
OUT of my body!

POOP.GO.CANCER.OUT.

I’m just saying…

Tags: Xeloda

Posted in Dealing with Gene Therapy Drug Reactions, Gene Therapy Drug Reactions, Gene Therapy Drugs, tired, venting | 2 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 »

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 »

Tuesday, July 28th, 2009

Changes in Meds – Xeloda

As part of my “Case Management” at the Burzynski Clinic, I get a weekly “touch-base” phone call from Dr. Khan, a nice young fellow. We discuss what is going on with me – my drug reactions, how I’m feeling and the status of any upcoming tests.

Then he goes and coordinates with Dr. Deleon, and lets me know if any changes need to be made. So far no changes. Until yesterday.

Because of the trouble I’m having with my toenails separating from the nailbeds, Dr. Deleon has changed my Xeloda regime from 2 weeks on/1 week off to 1 week on/1 week off.

They also want me to increase my blood testing schedule, since some of my reactions may be due to electrolyte imbalances. But I’m waiting for billing from the North Cypress Medical Center Laboratory Services for the last blood work I had done, so I can pay… Guess I should call and see what the deal is cuz I don’t want to be denied treatment.

It’s difficult to keep everything straight, and at the end of each day I’m So Dang Tired, I just want to crawl into bed… Stress, depression and reactions to my treatment contribute to this chronic fatigue.

Notes, I need to keep better notes.

Tags: Xeloda

Posted in Burzynski Clinic, Dr. A. Khan, Gene Therapy Drug Reactions, Gene Therapy Drugs, Gene Therapy Regime, North Cypress Medical Center, scared, tired | No Comments »

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