Tag Archives: targeted therapy

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. 

6 Comments

Filed under Living with Breast Cancer

A Cancer Primer

A friend of mine recently told me that when I talk about cancer, she gets a little lost in all the medical terminology and references to different kinds of treatments.  It’s a slippery slope, and I can see now that I have slid it. To make amends for my spouting of esoteric mumbo jumbo, herewith, a Cancer Primer:

 

Cancer Strong contender for Most Terrifying Word in the English language; also known as the C-Word, the Darth Vadar of disease, and “the little word with the big stink.”  Meaning: A disease that involves abnormal or uncontrolled cell division.  Basically your good cells get overtaken and/or crowded out by bad cells.  This doesn’t happen because you did something wrong, no matter what anyone including that nasty little voice in your head tries to tell you.

Metastatic Breast Cancer (Also, “mets” in cancer-lingo.) The scary, hairy, foul-breathed boogeyman of breast cancer. It means your breast cancer has spread to other parts of your body. But it is still called “breast cancer” no matter where it goes (bones, organs, lymph nodes…) Imagine you are Turkish, and you visit Newfoundland for some whale watching or, God forbid, turbot-fishing. You are still Turkish.  You are not considered Canadian just because you came to Canada for the fish.  OK, so perhaps this analogy is a bit obscure.  What I’m saying is, it’s not that your breasts have travelled to your liver, but that the invading cells are the offspring of the original trouble-makers. When this happens, they just add the M-Word to the C-Word and voila! Your C-Word gets cranked up a few stages (see “Staging” below.)

Biopsy This is when they physically extract suspicious cells from your body and send them to a lab for questioning under a microscope. They have lots of different kinds of biopsies, some of which are less unpleasant than others, but eventually you’ll get an answer. Oh yes, you’ll talk, little cells… You’ll sing like little cancerous canaries…

Pathology  The specific nature of your disease as defined by the characteristics of your cancer cells.  Some breast cancers are related to hormones, some are not; some breast cancer cells have certain proteins on them, others do not.  The lab identifies exactly what the cells are made of so the oncologists know whether to use the medical equivalent of numchucks or molotov cocktails.  All breast cancer cells are stupid jerks, you don’t need a microscope to see that.

Radiation I think everyone has a basic idea of what happens with radiation – you nuke the cancer.  In a localized, laser-beam sort of way. Check out “radiation” in the tags for more details.

Chemotherapy Ah, notorious chemo: the bald-making, sick-making, cancer-killing drug therapy. Actually, not all chemotherapies make you bald and many are much improved in the sick-making department too. They’ve come a long way, baby.  And they’re not all administered by IV drip, either – some (like my capecitabine) are pills.  Think of chemo like an army that goes in and wipes out everything good along with everything bad, with the intention of rebuilding the good stuff later (this usually works better in chemotherapy than in Bush Administration foreign policy.) The somewhat arbitrary attack plan explains hair loss; if chemo drugs are designed to attack fast-reproducing cells – like cancer cells – they’ll knock out hair cells too. Hair loss can be an incredibly devastating, psychologically debilitating, massive downer. You look in the mirror and see “cancer” looking back.  On the upside, people will give you their seat on the bus and eventually, the hair grows back. 

Targeted Therapies These newer cancer treatments are less arbitrary than chemo, and more targeted to the specific cellular stuff happening with certain cancers. For example, they may work in conjunction with chemotherapy to deliver the toxic drugs directly to the cancer cells (smart-bombing) or they may be designed to prevent the tumour from developing the blood vessels it needs to feed itself and grow.  Let’s all just take a moment here and be collectively creeped out that tumours develop blood vessels and feed themselves.  Seriously. It’s gross. It’s like something from a Ridley Scott movie.

Staging This is when they measure your cancer and kind of rank how bad it is.  Not that anyone ever says “it’s somewhat bad,” or “it’s extremely bad.” They will just talk about how much it has spread, how big the tumour is, where it is in proximity to organs, etc.  Stage 0 cancer is called “in situ” and means it hasn’t moved one little bit, and Stage IV is the big M.  People sometimes also talk about “high grade” and “low grade” cancer. This is another measure of the likelihood of the cancer to move around or otherwise become a greater pain in the a**.  In addition, you’ll hear about things like “triple positive” or “double negative” cancers – this isn’t a measure of the extent of the cancer but of its nature (estrogen, progesterone or HER-2 positive or negative) so don’t let it freak you out.  

There are many more terms in the cancer lexicon – far, far too many – but that, I think, is enough cancer talk for one day.

1 Comment

Filed under Living with Breast Cancer

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.

3 Comments

Filed under Living with Breast Cancer

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.

6 Comments

Filed under Living with Breast Cancer

Sayonara Herceptin?

It turns out I didn’t start my new chemo yesterday after all.

Basically the government won’t cover me for any more than the standard course of 17 Herceptin treatments.  The 17 treatments I’ve received to date are worth about 60K USD (and are completely free in Canada) but to go beyond the standard course I would have to show that my disease has not progressed during that time.  It has.  However some lumps have stabilized and my doctor is contesting the CCO’s decision to cut off my Herceptin, but she isn’t hopeful she can get around it (at least not fast enough) so unless my husband’s drug plan covers it, it’s Sayonara Herceptin.

This is not as bad as it sounds.  The new treatment is Lapatinib, which is a targeted therapy for HER-2 positive cancers.  I am a big fan of targeted therapies.  (Say it with me: Apoptosis!)  The only reason my doctor didn’t put me on it first is because she didn’t want to have to take me off Herceptin, knowing it would be hard to get me approved for coverage to go back on it again once I stopped. So she wanted to start me on a chemo that I could have in conjunction with Herceptin, and not a treatment that would replace it. 

I have heard really good things about Lapatinib, and I actually feel ok about this new development.  Like maybe just for once the universe is intervening on my behalf to make sure I get the right treatment (instead of the universe just screwing with me, which is what it seems to have been doing for the past 18 months or so.) I am genuinely optimistic that this treatment will be the one that works. 

On the downside, I’m going TWO full weeks without treatment because none of this will be sorted out until next week.  On the up side I will be in much better shape for the Weekend To End Breast Cancer Walk this weekend, having skipped chemo yesterday.  I’ve raised almost $9000.00!!!

8 Comments

Filed under Living with Breast Cancer