Tag Archives: Capecitabine/Xeloda

A Husband’s Plea for Help

Below is a comment I recently received in response to an earlier post, from September 17th.  The comment comes from a man who is desperately trying to help his wife, Deborah, to gain access to and coverage for capcitabine (Xeloda.)  Deborah has exactly the same kind of cancer as I have:  Stage 4, metastatic, HER-2 positive cancer that didn’t really respond to Herceptin. 

I find this woman’s predicament heartbreaking and very disturbing, especially since I have coverage and access to the very drugs she needs, while she (living only a few kilometers away) does not. I guess I don’t understand the meaning of the word “Universal” when it is modified by the term “Health Care.”

I’m posting this story in case anyone out there can help this family in any way – ideas, programs that you might know of, clinical trials, other drugs, anything. I’ve already asked my hospital social worker if she knows of any organizations that might be of assistance.  If anyone has any suggestions, please post a comment!!

Here is the original message from George:

Congrats on getting the treatment you needed, wish I knew if it worked for you? So it will help us in the battle to get it covered for my wife.

My wife, as the story below tells, is in need of the same drugs. But I have no drug plan, nor $8000 a month. Or a house to sell.

With a new CT scan with contrast to see if it has gone into her brain, this is Nov. 10/09.Here is her story, from a caregiver’s eyes:

Oncology patient at Brampton Civic Hospital, in Ontario.  She has been diagnosed with metastases breast cancer, stage 4, inoperable with HER2 receptors. Treatment of Trastuzmab, Gemcitabine and Docetaxel, started on April 21, 2009 and ended on July 30, 2009. The last and final treatment was cancelled because this cocktail was ineffective.

Then the NFL protocol was then given and cancelled after the 2nd bout, because it made her even sicker. She was placed in the hospital with a fever and low white counts. I.e. ABS NEUTS 0.4

Primary is Dr. S. Reingold of BCH.  We spoke to the Oncologist at the clinic, who then informed her, there is another treatment. Using the drugs called, Xeloda and Tykerb, this was on Aug. 10, 2009. At this time she was informed that this treatment is not covered by ODB. She is presently on O.D.S.P. for Truncal Neuropathy (2003).

The doctor at the clinic spoke of writing a letter, for assistance in paying for this treatment, which costs about $8000 a month. I have a copy of these letters dated Oct 8/09 and Oct.15/09. On Oct 8/09 and Oct 29/09, EAP said Xeloda was not covered in combination with Tykerb, though still under review by the CED.

First of all, what more is needed than, she is Stage 4, Inoperable and last but not least WILL DIE, if she does not get this treatment! I find it very appalling that if these drugs were to be used by themselves, ODB would have no problem in their coverage. Other provinces and countries are using them in combination, why not Ontario?

I have been keeping a documented record of all tests and medications, taken and given, since chemotherapy started. Every MIR, CT scan and hospital visit I can get, that the hospital will give me. Some of the hospital reports will not be given to me, claiming doctor privacy issues. These latter ones, I deem needed in this personal file, which I am recording for her, because her memory is not what it used to be.

A little personal history:

Deborah W. had been a book-keeper for a law firm for over 10 years and became Assistant Office Manager, in two years. After leaving this position, she was again a book-keeper for a Logistic company. Taking care of their books, this consisted of 3 companies, NO small task by any means. After being inflicted with diabetic Truncal Neuropathy (2003). She was unable to go back to work because of the pain and memory loss, due to the medications. In and around Oct. 2008, she began to overcome the aliments of the Truncal Neuropathy and two near death experiences. Just to have it be replaced by Cancer (five months later) that was never detected, even though she told her doctor of the new pain under her arm, till it was too late. Now again her life has become, nothing but pain. Also, CANCER took her mother and father.

Then in March, 2009, came the real blow to everyone involved, the words, INOPERABLE CANCER, 2 to 4 years to live. But this may not happen, since the so called normal chemotherapy did not work.  She is also a loving mother of two beautiful children, her daughter Jennifer 17 years old and her son Andrew age 23 years old, and with his girlfriend Elizabeth, their son Ethan, age 18 months. All she wishes is to watch them grow up!

I have known this woman since 1978, and we were married in April 27, 1979.

All I can ask now from anyone is, how can I get these drugs approved and covered?

Regards

Georg W. (Caregiver)

Update:
We are and have been asking the EAP to help cover only the Xeloda since, the makers of Tykerb, GlaxoSmithKline has stepped up to the bat. They are giving us Tykerb for free on Humanitarian reasons. Tykerb being the more expensive of the two drugs. Roche, the makers of Xeloda, are asking for us to cover 75% of their product.

 

Here is a photo of Deborah and her grandson at Halloween, with a caption from an e-mail from George:

Ethan and Deb“I’ve learned that in putting a face behind any story, can help even the hardest heart to open up, to the feelings it was meant to have. Sorry to sound like a commerical, but I’ll do anything to save my wife’s life.” ~ George W. 

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Chemo Overdose

Apparently my pain and torment is my own doing.  My chemo (capecitabine) is supposed to be taken daily for two weeks followed by a week off.  Guess who forgot to take a week off?  Yes, the genius with the stomach cramps over here.  So, instead of two weeks on chemo I went for nearly five.  This, according to the literature, is what is known as an overdose.  Pretty scary. 

No doubt I am proving someone’s argument about patients not being responsible enough to self-administer chemo.  I myself can hardly fathom my screw-up. I wonder how much damage I’ve done & how long it will take to undo.  This is my third day off chemo and the pain has barely abated.

You know that old Talking Heads song?  I keep hearing it, skipping over and over in my mind; the part where he says, “And you may ask yourself: My god, what have I done?”

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Under Siege

I have a high tolerance for pain.  Anyone who knows me well – family members, doctors, estheticians – will confirm this.  My husband and I agree: I am tough.  Not French Foreign Legion tough, but maybe Canadian Special Forces tough.

However, for the last 12 hours and, to a lesser extent, for 48 hours before that, I’ve been enduring wave after wave of intense abdominal pain. I emit weird primal noises and make fists and kick one foot around like a dog dreaming of chasing rabbits… And then the pain passes and, like a crazy person, I type some more.  

It’s the drugs – my hitherto mild-mannered capecitabine and lapatinib are now mercilessly kicking my butt.  Causing stomach cramps, intestinal cramps, nasty, painful, crampity-cramps and no small measure of the trotskys… If it were possible to be punched in the solar plexus and kneed in the nuts while in labour, that’s how I feel.

I have a hot water bottle pressed against my stomach at all times.  My husband makes them so hot they have to be wrapped in gigantic towels for the first couple of hours.  I may have poached my innards.  Don’t care – the relief is glorious.

My mom is now here, taking over where my husband left off when he went to work this morning.  She has fed me mashed bananas and electrolytes and soda crackers. She is busy in the kitchen now – I can hear her over my own weird primal noises; the comforting sound of her clattering around down there. 

Another wave is coming.  I really need to stop with the typing. Viva Imodium! Charge!

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Cancer-Killing Pellets

These are my new drugs — pink is Xeloda and the yellowish ones are Tykerb: 

Yum Yum! Cancer-killing pellets!

Yum Yum! Cancer-killing pellets!

 

So far so good; a little fatigue and some Trotskiite activity, but overall pretty smooth.  Today is day three.

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Paging Dr. Obama

I am a proud Canadian, and I defend our health care system with the kind of lunatic ferocity that cowers tea-partying town hall hecklers – and yet today at the hospital I actually turned to my husband and uttered the words “Thank God you have such great insurance.”

Blasphemy, I know.

But we went in for my treatment this morning only to find out that the targeted therapy (Lapanitib, aka Tykerb) and the chemo that must be taken in conjunction with it (Capecitabine, aka Xeloda) are not covered by OHIP.  Yes, I am serious.  No, I have no idea why not. This is breast cancer for god’s sake, not breast augmentation. 

We were told the approval process for assisted coverage could take several days, which would mean a fourth consecutive week without any treatment whatsoever.  All I could think of was how much my cancer managed to spread in the six-week period between CT scans while I was getting the clinical trial drug + Herceptin combo.  No cancer-fighting agents whatsoever for four weeks?? And this squeaky-toy cough of mine worsening all the time? You could say I was a little freaked out.

We were in fact wild-eyed and confused, and the telephone calls were flying fast and furious between the drug company case managers, the hospital social worker,  my husband, and his (really, incredibly helpful) insurance people. Being Canadian, I spent none of my time trying to figure out who should be blamed, sued and/or fired for this additional delay in my treatment, and all of my time trying to figure out how to fix it. While also freaking out.

Luckily, all parties seemed hell-bent on achieving the same goal – namely, getting me the treatment, stat – and as a result, the drugs are being delivered to my home tonight.  The total cost to us after the 90% coverage of my husband’s excellent drug plan & the drug companies’ “compassionate coverage” plans is still a few hundred dollars a month, but this is ok compared to the several thousand a month we were facing at around 10 a.m. this morning.  And I should note that even if we didn’t have an insurance plan, there are systems in place to ensure no patient is denied treatment — it just takes a few days.

Still, this experience has shaved a little smugness off my pride in our universal health care system, and has shaken my confidence that I will always have timely and free access to the treatments I need.  This confidence, really, that is every Canadian child’s birthright, every Canadian immigrant’s landing-right, and should be everyone’s human right too.  

So our system isn’t perfect, but I haven’t given up the faith completely: I have access to treatment today and we didn’t have to sell the house to get it. That’s an outcome I can live with. Literally.

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