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?
Georg W. (Caregiver)
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: