Category: General

From the BBC: ‘Personal’ health websites sought

0
People searching online for health advice often reject sites giving high quality information in favour of those with a human touch, a study suggests.

Researchers found people use an initial weeding out process to deal with the minefield of health information of variable quality available.

However, this tends to mean they quickly eliminate most NHS and drug company websites, they said.

The study was funded by the UK’s Economic and Social Research Council.

People don’t have the patience to scroll through pages in order to find something useful
Professor Pamela Briggs
Northumbria University
The researchers examined the internet search strategies of people who wanted to find specific health information on topics such as high blood pressure, the menopause and hormone replacement therapy (HRT).

They found that many websites were dismissed at quite amazing speeds.

Lead researcher Professor Pamela Briggs, from Northumbria University, said: “One thing that really put people off was advertising, so people clicked off drug company websites straight away.

“Generally, the medical information on drug company sites is very accurate but people question the authors’ motivation and agenda.

“The issue of impartiality is quite crucial in building trust.”

Personal stories

NHS websites fared little better. Often these were rejected because the first page participants were directed to was a portal or they had too much background or generic content.

Professor Briggs said: “People don’t have the patience to scroll through pages in order to find something useful.

“Ease of access is so important.”

The research also found that even if a site made a favourable first impression, it was unlikely to keep the attention if it did not include personal stories to which the reader could relate.

Many were specifically drawn to sites where they could read about the experiences of other people who have the same problems and concerns.

But Professor Briggs warned that the tendency to trust sites with personal testimonies from like-minded peers was potentially flawed, as it could reinforce unhealthy behaviour patterns.

Dr Paul Cundy, a GP and member of the British Medical Association’s IT committee, said there was also a danger that personal testimonies were planted by drugs companies.

He said drugs companies had been known to sponsor self-help sites which appeared at first glance to be independent.

“People should be encouraged to gather information from the web, but they should then take it to a doctor to discuss face-to-face rather than immediately taking action based on what they have found,” he said.

Story from BBC NEWS:
http://news.bbc.co.uk/go/pr/fr/-/2/hi/health/6422157.stm

Published: 2007/03/07 00:13:29 GMT

Note from Beth: Help us to build a community – sign up for your free blog at www.healthblogs.org

Categories , ,

Miscellaneous

0

I just finished watching Gallipoli, with Mel Gibson (from 1981). That movie makes me think of Chris Hollyer. Each year, on ANZAC day, he would write to the list about the meaning of the day to people in Australia and New Zealand. We’ll have to maintain the tradition for him.

If you’re interested in reading health news, and would like one place to go to get the headlines and discuss the news, try http://digged.healthblogs.org/. I’m sort of addicted to news, so I hang out there a lot now. If you know of any good RSS newsfeeds for health, let me know.

Does anyone know what the lifetime limit is for Doxil? That’s something I need to look up and stay aware of. I looked at my chart last week, and thought I saw that I’m getting 65 mg/m2. The usual dose for this regimen is 30. I need to see the doctor and make sure. I could have misread something!

Categories , , , ,

Antibiotics

0

Last week I called my doctor about my never-ending cold. I had a sore throat for what seemed forever, and evidence of a sinus infection. Like a lot of people, I just thought if I waited long enough, it would go away. It didn’t. I got a prescription for Levaquin (500 mg) for 5 days. I have one more day to go. I have to say the stuff works! It’s not without its own set of side effects though. Who can tell what cause what when you’re on a bunch of different drugs though? Anyway, learn from my mistake (even though I never do). If you get a cold and it doesn’t seem to want to go away, call your doctor!

Categories

Big Report

1

I have a lot to report tonight. First, my IgA has gone down more from the Revlimid/dex trial. Today’s result was 584 mg/dL. It’s never been that low since my diagnosis. You can see all the results I have back so far by clicking on “My Labs” above.

Once my MM is at an acceptable low level, we will harvest my stem cells. The way it works there at Wake Forest, is like this: They are going to contact my insurance company to make sure they will pay for a harvest and store. Once I have that approval, they will have me in the hospital for 2 days while they administer a fairly powerful dose of Cytoxan. Then they will start me on Neupogen for 10 days, which I will inject at home. I’ll have blood tests here at home to make sure my counts reflect the administration of the Neupogen. It’s supposed to mobilize the stem cells by producing so many that they spill out of the bone marrow into the blood stream. It can cause bone pain when it starts to crowd the marrow. It can be managed with pain meds, which I already have. I’ll return to WFUBMC and have my stem cells harvested through a process called pheresis, where the blood will be drawn out through an IV in one arm, the stem cells removed and the blood returned through an IV in the other arm.

I had an xray to look for lytic lesions. The doc said that AVN is painful when active and at rest, so he didn’t believe it was that. No lesion was found. That was good news. It’s probably the sciatic nerve or some inflammation somewhere.

I lost 4 more lbs between my last appointment 2 weeks ago and today. Seems weird, being on so much dex! But I’m glad. I’m not even trying. I think it’s probably the GI problems I have. Also when I’m on the dex, I don’t have much of an appetite. I’m very thirsty though. It’s when I’m off the dex that I have a ravenous appetite. I just don’t let myself have anything that’s bad for me. During dex days, I stay off carbs as much as I can & sugar (always off sugar, for that matter).

I am going to a different dex schedule. Since I’m so miserable on my days off (exhausted!), I am going to do a tapered dose that goes like this:

Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off

Categories ,

From the New York Times: A Cancer Drug Shows Promise, at a Price That Many Can’t Pay

1

More from KM:

From the New York Times: A Cancer Drug Shows Promise, at a Price That Many Can’t Pay

“Doctors are excited about the prospect of Avastin, a drug already widely used for colon cancer, as a crucial new treatment for breast and lung cancer, too. But doctors are cringing at the price the maker, Genentech, plans to charge for it: about $100,000 a year.”
For the complete story:
http://tinyurl.com/banwj

This is the same scenario for revlimid. Written off label for myloma, it costs three times as much as it does for MDS treatment since the dosage for MM is higher. And it makes the $100,000/year for avastin look like a bargain when Celgene charges $180,000/year for revlimid. This seems to be the trend for cancer drugs-price them so high that few can afford them or insurance can’t or won’t pay for them. In the meantime, people die.
Dave did get his first free revlimid today from the Expanded Access Program. We’ll get it free as long as we can so that we don’t burden our insurance company any more than we have to.

Categories

$5250 a month for Revlimid?

0

A fellow listmember on the ACOR MM list has been in touch with Celgene quite a bit, to get her husband on the new drug, Revlimid. Those of us in the trials get the drug at no cost to ourselves, but when it’s approved for use with MM, we’ll have to pay (one way or another). I’m going to start an email campaign to let the media know about this. So far, I’ve only written to CNN and had no response. I know. I’m expecting too much.

CELG financial data

From K.M.:
Revlimid is available to MM patients off-label from pharmacies approved
by Celgene. Dave got his from Biologics in NC last month and I think
that the press release was adding another pharmacy to their list (maybe a
total of 3 now.) The problem is that they will charge your insurance (or
you if your insurance won’t pay) $15,000/month for the drug. This is
because each pill costs about $250 and they only have 5 mg and 10 mg
pills available commercially. (One Celgene manager told me that they
will have 25mg pills available when revlimid is approved for MM since
that is the standard MM dosage, so it will “only” be $250/day instead of
$750/day.) You may still be able to get the drug for free from the
Expanded Access Program which puts you in a clinical trial. Dave starts
on the EAP this week after having our insurance pay $15,000 for revlimid
last month. We, or our insurance co., won’t be paying anything for the
drug, but he has to adhere to the protocol of the trial.

I see Brrreeeport is still going strong.

Categories

Rev/dex update

0

So far, the Rev/dex combo is working for me. It’s not without its problems though. My neuropathy has progressed considerably for the short time I’ve been on Revlimid. I started on January 11th, I think. It’s just a little over a month later, and my feet are more numb. I feel a little clumsy when I walk. My hands, which were only affected a small amount by thalidomide, are now burning. I have that same burning feeling on my face, around my nose and mouth. I will report these problems at my next appointment on the 22nd. If it seems to get worse in the meantime, I’ll call and tell someone.

I think most of the other problems I’m experiencing are due to the dexamethasone. I feel weak, shaky and tired. I developed the cushingoid symptoms with great speed. When you read about dex side effects, the ones that are supposed to be due to long term use seem to be standard for me. I get the classics: moon face, buffalo hump, turkey neck. You know what I’m talking about! I feel like a monster, and I bet I could scare little kids.

brrreeeport is the word of the day.

Categories

Results!

0

Here’s what I just received by email:

“Got your phone and e-mail, just been very busy with patients this am. Your values are much better. M-spike in beta 2 region is 0.29 G/dl, Gamma region is 0.18 G/dl. Your IGA is 1132, IGG 310, and IGM 37

My IgA was 2245 mg/dL when I started. My IgM is in the normal range for the first time ever! IgG still low.

Categories ,