Tag: Xeloda

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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Wednesday, December 16th, 2009

Xeloda Resolved


Got into Texas Health and Human Resources today, and the lady I saw there said that she was pretty sure I would be denied for Medicare.

That’s good cuz I don’t want to loose my Xeloda PAP.

I called Xeloda and brought my case up to-date. They are shipping out a new supply.
That’s good cuz I am almost out…

Some good stuff going on…

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Monday, December 14th, 2009

Week 3

So starts week 3.

Bleh.

It’s kinda weird to have something else to mark time with.
Unemployment
cancer

Bleh.

I’ve got a few things to accomplish this week…

Need to get to the Texas Health and Human Resources and get this issue with my Xeloda PAP Eligibility Denial straightened out.

Follow-up on unemployment status.

Locate someone to keep the Pups so that I can get down to Corpus for Christmas.

Get my Christmas cards out.

Those are the main things.

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Saturday, December 5th, 2009

Splitting Hairs and Walking on Eggshells

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…

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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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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…

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Friday, September 11th, 2009

Loosing My Mind

I’ve been able to loose a couple of the things weighing on my mind.
a couple of them
no longer on my mind…

* HER2 increase of 5.2
* Not enough money for September meds
* Burzynski $1,500 “Medication Management” fee
* Rejection by my PCP to handle Rx reorders
* Xeloda PAP Eligibility Denial

These are the things on my mind

No longer on my mind

Loosing my mind

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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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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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