Tuesday, August 25, 2015

Ontario Residents have a say in physician-assisted suicide

Queen's Park wants to hear your thoughts on physician-assisted dying. We’re calling on you, DWD Canada supporters in Ontario, to complete the  provincial government’s online survey. Voice Your Choice today for new laws that promote equal access, prioritize individual choice and protect vulnerable Ontarians without creating onerous barriers for eligible patients.

The survey is part of the province's efforts to consult Ontarians on how it should respond to the Supreme Court’s February ruling in Carter v. Canada. The judgment, which comes into effect onFeb. 6, 2016, struck down the laws prohibiting physician assisted dying.

We’re here to help
We’ve put together a package of resources to help you make the best of your submission. In ouronline survey toolkit, we’ve provided context for certain questions — such as best practices in other jurisdictions where physician assisted dying is legal — to help you decide which answer to pick.

While filling out the survey is critical, you can have a still greater impact by submitting general comments, too. For those of you who are willing to take this step, we've crafted a separate letter-writing toolkit to help you drive your message home.

Once you've completed your letter, send your comments by e-mail to endoflifedecisions@ontario.ca. (And don't forget to forward your response to DWD Canada — copy us at the following address:consultation@dyingwithdignity.ca).

Act now!
Ontario's consultation closes on Oct. 1, 2015, but why not fill out the survey today? The decisions Queen's Park makes in the next few months will determine how Ontarians die for decades to come. Don't miss out on this once-in-a-lifetime opportunity to help create good legislation and protocols that will ensure patient choice in Ontario!

All the best,
Wanda Morris,
CEO, Dying With Dignity Canada

Monday, August 24, 2015

Alzheimer's 'Epidemic' Disproved By 22% Lower Dementia Rate in UK Study

The media cannot help but fearmonger. It make readers of us.
Time to take data and not run opinion polls by for-profits, like CALTC. Many of us are caring well for those who are ailing.
A recent UK report on dementia statistics tells us that it isn't increasing as many have thought.

Story image for uk study dementia statistics from Yibada (English Edition)

Alzheimer's 'Epidemic' Disproved By 22% Lower Dementia Rates In ...

Yibada (English Edition)-Aug 23, 2015
Dementia rates are leveling out in the United Kingdom (UK) according to a new study, which also argues that an "explosion" of Alzheimer's ...

The Globe and Mail

Wednesday, August 19, 2015

PART XLIV: 'closing the loop'

Hubby's memoir for Sady
I always do a selife!
Another marathon trip to a doctor for 8:15 a.m. in the city. 90-minute drive in order for this guy, who wants to 'close the loop', see us again. We saw him back in Feb. and his clinic misfaxed the colonoscopy report. The radiation oncologist didn't get it, either. No big deal, as it was refaxed.

Now, the doctor who performed the colonoscopy (Feb. 2015) and wrote the report, wants to see hubby back in his office. His office is 88 km away!

He gave specific instruction, post anesthetic, which I missed out on. Hubby was still recovering from said anesthetic. That said, he's a fine fellow.

#44 Dr. B 8:15 app't 

  5:30 got up
 6:30 left house to Close the loop
 8:06 arrived at Ottawa Hospital
 8:33 taken into room K4, checked paperwork with Neil nurse, first one who failed to introduce himself, blue scrubs, thought he was a nurse!

BTW poison ivy boils starting, don't know where from. (Back to this later.)

 8:37 We were reviewing notes, simply a matter of responding to the request for consult, after failing to get the colonoscopy report. Dr. B wanted to doit the I-s and cross the Ts.
 8:40 noticed gel, large tube
 8:44 Dr. F, assistant/intern convinced him to have his 7th rectal in 6 mos. might as well, She promises she send reports to everyone. They checked the mucosae (plural of mucus), but with a bad back, can't lean, they worked around this. Small swelling they attribute to scar tissue?

Either way, prostate cancer, says Dr. B, is indolent, slow growing.
His original report suggest hubby return in five years. Hubby and I giggled as he'd take the five years, and be happy to still be alive!

We stopped for brunch, as I wouldn't eat breakfast at 5:30 a.m., and all the Timmy Ho's were full.
My poison ivy rash and blisters were really awful, I've been using the steroid cream for two months on the odd spot. This time, again, it's all over my legs.
Into the ER and out in under 90 minutes.

Monday, August 17, 2015

PART XLIII: consult with GP

#43 Consult with Dr. Dan

 Ushered right into the office, only 8 km away!  BP 146/59, not so bad.

 11:45 What is your understanding of your illness at this time?

Two recent reports, printed off for us.

 Bone and CT Scan printed for us. There is a ridge near operative bed where scar tissue could be.
Hubby's had 7 rectal exams None thought this an issue.
Biopsy negative.
Mesorectal lymph nodes are swollen
This is the illustration by the radiation oncologist
 Dr. C. concerned about the area. If there is no spread, they could go ahead with anti-androgen. With reduction in the size of the lymph nodes, they could administer a 2/3 lower dose.
The radiation oncologist, Dr. K, says there is a 10% chance of damage, and a 25% chance of curing cancer.

The Rx is for zoladex and cacidex, anti-androgen therapy. Start zoladex before cadidex. one dose subcutaneously every 3 mos. needle zoladex could be administered here. 3 mos. back to him strangling PSA cells and likely shrink it. scar tissue close off bladder, (chance) colostomy bag bag, catheter would change life. bladder frequency a risk, too. even if it doesn't cure it could control, do use radiation to control cancer, would slow it down and push the schedule back, if not curative, depriving the cancer cells of fuel vs. controlling it. impossible to predict, we're humans and not absolute science.
"Don't over blow risks of side effects." Stoma nurse could help us to understand the colostomy bag.

There are several videos on-line showing how to changed you colostomy bag. It doesn't look easy.

How to change your ostomy bag

After this appointment we decided not to proceed with radiation. Too much risk. He's healthy and happy and we are enjoying life.

Tuesday, August 4, 2015

How are drug prices set?

I watched an horrific story on The National last night. I was truly shocked, but not surprised.

The big Pharmas are setting different prices for different drugs, depending upon how much money a family has, where they live, and what their government can afford to pay. New Zealand, for example, has eschewed this drug, since they cannot negotiate a price they can afford.

Soliris, a drug which targets AHUS, for example. It costs the manufacturer about $60 to manufacture each bottle, and they charge $6700 per bottle to certain governments, and insurance companies, who pay for it for their patients. Once a government contracts with Alexion, their deal and the cost of the drugs must be kept silent. Some are granted the drug for humanitarian reasons, if they is nothing else that will offer them a cure. Others, such as the man in the video, who can maintain his health with daily dialysis, they refuse to grant him access to the drug.

The worst part of this is information from a researcher who tells us that most of the research leading up to the invention of this drug was done using taxpayer dollars, within R & D departments, in academic laboratories.
You are, of course, familiar with crowd sourcing initiatives for those unable to afford medical treatments? Big Pharmas are now hiring PR firms who teach desperate families how to exploit the media, and milk the public for more money. As one who is a shareholder, with many varied stocks, I am becoming more inclined to put my money under a mattress.

How pharmaceutical company Alexion set the price of the ...
A special drug for an extremely rare disease, Soliris costs about half a million dollars per patient, per year, for life. Why? The reasons for the price are locked in "the black box" of drug pricing that governments are seeking to crack open.
Alexion said drug pricing depends on a "unique decision-making framework" that takes into account "the rarity and severity of the disease, the absence of effective alternative treatments, indirect medical and social costs, and clinical data that demonstrate the impact of the drug on patients who desperately need it." 
Soliris is Alexion's only drug, but it's a blockbuster, earning revenues of more than $6 billion in just eight years, and making Alexion one of the fastest growing companies in the world.

Accessing healthcare isn't cheap, even in this country with universal healthcare. We are at visit #44 for prostate cancer. Our friend is far beyond visit #100.

  • Transportation to and from appointments
  • Parking at hospitals ($13  or $14/visit)
  • Meals out, while on the road for treatments
  • Drugs you take at home, rather than in a hospital, patients pay for.
  • Time off work, which is a dear cost in terms of time, energy, goodwill from your employer, even if you are on a salary, and not working on hourly wages.


Soliris is indicated for the treatment of patients with paroxysmal nocturnal hemoglobinuria (PNH) to reduce hemolysis. See full prescribing information.

How A $440,000 Drug Is Turning Alexion Into Biotech's New ...

Sep 5, 2012 - 10 Stocks to Buy Now ... Alexion shares are up 600% since the drug's.... by insurance,” says Biotechnology Stock Research's David Miller.

Wednesday, July 29, 2015

PART XLII: follow-up with the radiation oncologist

Trip # 42 review of the CT Scan and Bone Scan results, as well as the DEA and PSA tests.
It's been a journey.

Follow-up with Dr. K 

2:00 p.m. Left house, not 1:50!

They are cutting all of the poisonous wild parsnip, cow parsnip, and other weeds in the ditches. It's a darn good idea.
Saw a cool grass cutter. No photo, I was driving.
Here is one from an ad. 

We were off to Queensway-Carleton hospital. It's all part of Ottawa-Hospital. They told us they have to send non-Ottawa residents to a hospital nearer to us. We're in the western part of the city now!
Mysterious dude in Bells Corners! "Free bike taxi!"

3:10 arrived at the hospital. Checked in at the desk. I like to dress up some. It makes me feel better. I think anyone in a hospital needs to see nice textures and colours, and people who look after their appearance.

You have to love the people who donate for these buildings to be spruced up, creating wings, or building improvements. The Stiles and Bennet Atrium is an example. The Ottawa Firefighters helped pay for the waiting room.

If you are having radiation treatments, you can sign onto the computer and complete the ESAS on-line, to have it added to your records.

The ESAS is an excellent quickie self-administered reporting form for symptoms. There are always a variety of people, some dreadfully thin, others wearing head scarves, sitting in the waiting areas.

An important part of treatments is reporting symptoms in case the efficacy of the treatment plan goes awry.

I recommend this form for my clients, too. That and the PPS. It helps families to keep track when reporting back to physicians.

 Patients can report their ESAS scores electronically at many regional cancer centres using ISAAC. Find out more about ISAAC (Interactive Symptom Assessment and Collection)

3:32 We were taken into the room, not bad for a 3:30 appointment! Lee-ann, our nurse, checked the files to ensure that the test reports were in the hard copy of the file. We still have an issue locating the colonoscopy report done at the Ottawa Gastrointestinal Institute clinic.

The mistake with this particular test: it was done in a separate clinic last February, and the report was not faxed to our two doctors: the urologist, and our GP (Dr. KR) or to the wrong place.
In addition, post-procedure, the doctor who performed the colonoscopy (Dr. B) spoke to hubby in the recovery room, WITHOUT ME THERE, while JB was coming out of the anesthetic. That really peeved me off. Dr. B gave some verbal directions, which didn't make it to our urologist.

There is a lot of psychosocial and educational (e.g., nutritional) support for those confronting cancer. It's good to know people are talking about this.

3:50 in came our Dr. K. Hubby's gown says, "Please wash your hands" but our doctor says it's subliminal for him, he doesn't even see the message any more. He did wash his hands, though!

I had a bit of fatigue, I was thirsty and suddenly had some dizziness. Thankfully, I had my Stewart Park Festival mug with me and grabbed a spot of water from the tap. It's a light plastic, and really handy! We used it at the park with the girls last week!

Time for a peek. The doctor pulled the curtain, as if I hadn't seen any of this before!!! (Trip #42, right?!)
the curtain in iPad photo mode

After, we had a long sit with the physician, to determine treatment plans, options, and side effects. Another mistake: the colonoscopy report is still missing. We went to our GP after our last visit, two weeks ago, and asked the clerk to fax them to the urologist (Dr. C), and our radiation oncologist (this guy, Dr. K). Dr. K is going to demand a consult with the clinic's doctor who did the procedure. The system isn't broken, it just has a few cracks. In this case, blame a clerk, methinks.


The tests do not indicate that there is spread outside of the two lymph nodes. This is good. It's a matter of time, and then we'll do some anti-hormone therapy, which will slow it down.
The PSA test is down slightly. This is good, too.
Hubby's PSA test results
We asked the doctor for copies of the most recent tests: CT Scan, Bone scan, CEA, PSA. He said to go upstairs to medical records and ask for them, then they will print them. We would have to pay a fee. We'll just go back to the GP and get them. And we tracked down the mysterious colonoscopy report, two days later. It was negative for colon cancer. More good news.

4:23 we were done, the doctor spent a half hour with us. I could tell he was getting a bit antsy, but there were questions asked and answered! There is much to learn.
 We paid our $11 parking fee. Very few cars left in the parking lot. It was closing time!

5:30 at the pub for dinner. One seldom feels like cooking after these marathons. Home again to sleepy cats.
The CT Scan and Bone Scans didn't show any more spread, but there could be microcells anywhere. He has two enlarged mesorectal lymph nodes. JB's blood tests were OK. PSA hasn't risen too much. He needs to decide if he takes anti-androgens now or later. We are in to see his GP tomorrow for more discussions! Cats are exhausted with all this! They are helping with paperwork.