Dealing with Gene Therapy Drug Reactions

Only its not hairs that are splitting,
it’s now the skin on my feet that is splitting.
The past 3 weeks it was my fingers – spits on my fingertips and along my cuticles that made it necessary to wear band-aids and finger cots to protect my fingers.

Now it is my feet.
Especially my heels
Painful splits

Until now, it seemed that I might be able to “dodge” the Hand-Foot Syndrome that is one of the side effects of the Xeloda that I’m taking.

I’m slathering my feet with cream and aloe gel and then sleeping with socks over all that.
Offering some relief, but still is painful.

I’m literally walking on eggshells.
At least it Feels like it.

Painfully painfully so…

Tags: Hand-Foot Syndrome, splits, Xeloda

Posted in Coping, Dealing with Gene Therapy Drug Reactions, frustration, Gene Therapy Drug Reactions, sadness, Stress, tired | 1 Comment »

Wednesday, November 4th, 2009

Gaseous

I really am tired of…

Excuse me!

Pardon me!

I am So Sorry!

Oops..

How Much embarrassment can a Gal endure?

I Swear, if I have Any More Gas come from my Body, I will Simply Float Away.

Tags: gas, Gassy

Posted in Coping, Dealing with Gene Therapy Drug Reactions, Emotions, frustration, venting | 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 »

Sunday, October 18th, 2009

Abnormally Abnormal Aches and Pain

I’ve had an “abnormal” amount of muscle aches and joint/bone pain lately.

The normal side effects of the meds I’m taking

is abnormal muscle aches and joint/bone pain

and I have been having an abnormal amount of abnormal

especially in the area of the osteoblastic lesions

I’m scared

abnormally.

Tags: aches and pain

Posted in Dealing with Gene Therapy Drug Reactions, scared | 1 Comment »

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 »

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 »

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 »

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