Tag: Tarceva

Friday, January 8th, 2010

Xeloda – Fluxxed Again

Just when I thought the issues with Xeloda were resolved, I am told that my prescription is on hold until I provide signed acknowledgment of notification of a change in the Roche Foundation.

In March 2009, Roche and Genentech became one company and this led to some changes. As of December 31 2009, Roche ceased to distribute free medicine. Starting January 01 2010, I have the option to be supported by the Genentech Access To Care Foundation, which will provide access to Roche products previously provided by the Roche Foundation. This notification was mailed out on January 04 2010.

In order to transition with no interruption in my medical treatments, I need to sign and return the GATCF Patient Authorization and Notice of Release of Information (PAN) form that will be provided to me. They are supposed to have included a self-address, stamped envelope for convenience. That was very nice consideration.

Thankfully, the prescription was extended for this month, and these limits won’t be effective til next month. As soon as I receive the forms, I will fill them out and return them!

I hope this change does not effect my Genentech PAP for Tarceva and I can’t afford to loose my Xeloda PAP either.

A state of constant flux and I’m back on the roller coaster

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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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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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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!

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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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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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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-1256 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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Saturday, July 18th, 2009

Mouth Sores – July 2009

So… Thanks to the Tarceva and Xeloda I’m taking, the mouth sores have started… Just one so far. Its on the inside of my left cheek. It’s not big, but it hurts… I wonder how bad they will get once they really get going.

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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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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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