Tag: Xeloda

Friday, September 4th, 2009

Juggling

I feel like a juggler.
The one you see who keeps getting more and more balls added to their act.

I was talking with the PAP Rep from Roche about my Xeloda PAP eligibility denial, when I noticed the dates on the letter…

From Roche it was dated Aug 11 2009 and stated I had one month to resolve.
The date stamp from our mailroom was August 27 2009,
I received it on the 28th.
Today is Sept 04, and a long holiday weekend is coming up.

That will give me 4 days next week to get this done.
Four Days to navigate Texas Bureaucracy.
Four short days…

Thank Goodness the Rep was able to get my time extended for one month.

She advised me to call her and let them know if I was able to get any resolution.

I told her that she would not have to worry about me keeping in touch.

Just add another ball…

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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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Tuesday, September 1st, 2009

Compromise…

So, I have a compromise… of sorts.  HA.

Today I talked with one of the financial people at Burzynski Clinic, and they are “willing” to let me have 2 weeks of Sodium Phenylbutrate for a payment of $2,250.00.

However, they AGAIN want to collect $1,500.00 to “manage” my medications.  ”Managing” means to submit refills for the Tarceva, Xeloda, Zolinza and Zometa – which are all due.

That’s All

Simply Submit The Refills to the drug companies = $1,500.00.

WTHeck??

I JUST informed them that I cannot afford the charge for my meds this month and they wanna ADD AN ADDITIONAL $1,500.00??

Funny thing is, that when I stated that I wanted a copy of this “new policy” in writing, I was told that it’s not in writing, it’s a verbal thing, that all new patients are being advised of the same policy.

W.T.HECK??

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Saturday, August 29th, 2009

The Ups and Downs of Xeloda PAP

Dealing with the Roche Patient Assistance Foundation for Xeloda has been a Roller Coaster ride…

First I’m “preliminarily” approved via the initial phone interview

Then come to find out that I was denied

Then I appealed

Finally I was approved

And Now…

Yesterday morning at work (Friday), I got a letter from Roche stating that they felt I should have pursued another resource for financial assistance before I went to them.  They advised me to contact Texas Health and Human Resources requesting assistance.  If I apply and 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.

WTHeck?

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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…

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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.

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Monday, July 20th, 2009

Xeloda – On Again

Back on my 2 week regime of Xeloda.  Oh Yay – more gastro-intestinal fun times…

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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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Monday, July 13th, 2009

Lil Xeloda Vacation

This is my week off of Xeloda – two weeks on, one week off, repeat repeat repeat til whenever.

While this medication is Much less to deal with than the high-toxcity chemo infusions I was previously on, I will still appreciate a “break” from the side effects…  They Won’t Totally go away, a week is not enough time for that, but they Should subside a bit…

Especially the diarrhea, mouth sores, abdominal pains, excessive gas, Hand-and-Foot syndrome, dry itchy skin, rash, nail problems, tiredness, weakness, dizziness, headache, difficulty sleeping…

Wouldn’t mind some loss of appetite… just saying.

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Thursday, July 9th, 2009

Xeloda PAP Support

Today, at work, I got a call from Xeloda Patient Assistance Program Customer Support at Roche.

Wow… here I am, on this big company’s “hand out” list and THEY are checking on me… to see how I am doing… how I am handling the drug.

The lady was so very nice… we chatted about what I’m doing right, what I’m doing wrong, and what things I might consider changing.

Most importantly I’m taking the drug correctly (2tabs/2x daily as prescribed) and that I am aware of the common side effects and the uncommon ones to be concerned about.

She also mentioned not to eat spicy foods… uhhhhh… me?  Not eat spicy foods??  Like THAT is gonna happen?  Ok, waitaminute… lemme ask “why” before I make any foolish life threatening decisions.  So, why?  Heartburn.  Ok, I can deal with a little heartburn.  And seriously, the only heartburn I have had was when I added cayenne pepper tabs to my daily herb regime and then upped the dosage to 4/40,000 unit tabs/2x daily.  Heartburn for a few minutes after about 5 min of swallowing – relieved with drinking water.  She asked why I was taking so much cayenne, and I explained that I had read that there is evidence that capsaicin MAY affect cancer, especially to kill breast cancer cells, so I’m gonna heap that capsaicin into my body.  Go figure.

Second suggestion… forgo the greasy foods.  Well, I’m not much of a greasy food eater, never have been.  My weakness is the carbs – rice, pasta, breads, mostly gone from my diet now. So… why?  cramping.  Yep, I had kinda figured that one out for myself when we went to get Mexican food.  Probably the “greasiest” food I eat, and probably the worst pain I have had so far (on the gene therapy treatment), so now I am careful there.  But gotta have my Mexican food, my queso and extra jalapenos and my occasional margarita (or two)!  *LOL*  She said that was ok, just not in excess.

Third suggestion… go easy on the “gassy” veggies, especially raw, like broccoli and cabbage.  Ok, now she has named the 2 raw veggies I eat the most of – up to 2 cups of raw broccoli a day!  Again, why?  Cuz of the gas, silly girl.  Ok, I can relate,.  I am Major Mizz Gas. I.Am.Talking.Serious.Gas.  But it’s been shown that green vegetables in the cruciferous family — which includes cabbage, broccoli, Brussels sprouts, and cauliflower (especially raw) MAY provide Important agents (Phytochemicals) in the fight against cancer, so I will endure some uncomfortable (and sometimes embarassing) gas to keep them Majorly in my diet.

Over all, I’m doing ok and her info was very helpful, and she said she was making notes and that my input would be helpful.  Hey, at least I’m “giving back”!

I Hate having to ask for such high end assistance.  I’ve never been one to support the welfare state, even now.  I’ve pretty much always paid my own way – borrowing from my parents occasionally but not often.  This is sure Not how things were supposed to be.  For one, I Never thought Mr Sack would do me like he did and leave me high and dry to handle this alone.  But, it is what it is, and he is Most Certainly what he is.

And it is…

XELODA

How should I use this medicine?
Take this medicine by mouth with a glass of water, within 30 minutes of the end of a meal. Follow the directions on the prescription label. Take your medicine at regular intervals. Do not take it more often than directed. Do not stop taking except on your doctor’s advice.

Side effects that usually do not require medical attention (report to your doctor or health care professional if they continue or are bothersome):
•constipation
•diarrhea
•dry or itchy skin
•hair loss
•loss of appetite
•nausea
•weak or tired

Side effects that you should report to your doctor or health care professional as soon as possible:
•allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
•low blood counts – this medicine may decrease the number of white blood cells, red blood cells and platelets. You may be at increased risk for infections and bleeding.
•signs of infection – fever or chills, cough, sore throat, pain or difficulty passing urine
•signs of decreased platelets or bleeding – bruising, pinpoint red spots on the skin, black, tarry stools, blood in the urine
•signs of decreased red blood cells – unusually weak or tired, fainting spells, lightheadedness
•breathing problems
•changes in vision
•chest pain
•diarrhea of more than 4 bowel movements in one day or any diarrhea at night
•mouth sores
•nausea and vomiting
•pain, swelling, redness at site where injected
•pain, tingling, numbness in the hands or feet
•redness, swelling, or sores on hands or feet
•stomach pain
•vomiting
•yellow color of skin or eyes

What should I watch for while using this medicine?
Visit your doctor for checks on your progress. This drug may make you feel generally unwell. This is not uncommon, as chemotherapy can affect healthy cells as well as cancer cells. Report any side effects. Continue your course of treatment even though you feel ill unless your doctor tells you to stop.

In some cases, you may be given additional medicines to help with side effects. Follow all directions for their use.

Call your doctor or health care professional for advice if you get a fever, chills or sore throat, or other symptoms of a cold or flu. Do not treat yourself. This drug decreases your body’s ability to fight infections. Try to avoid being around people who are sick.

This medicine may increase your risk to bruise or bleed. Call your doctor or health care professional if you notice any unusual bleeding.

Be careful brushing and flossing your teeth or using a toothpick because you may get an infection or bleed more easily. If you have any dental work done, tell your dentist you are receiving this medicine.

Avoid taking products that contain aspirin, acetaminophen, ibuprofen, naproxen, or ketoprofen unless instructed by your doctor. These medicines may hide a fever.

Do not become pregnant while taking this medicine. Women should inform their doctor if they wish to become pregnant or think they might be pregnant. There is a potential for serious side effects to an unborn child. Talk to your health care professional or pharmacist for more information. Do not breast-feed an infant while taking this medicine.

Men are advised not to father a child while taking this medicine.

Where should I keep my medicine?
Keep out of the reach of children


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