Wednesday, September 03, 2008

Monique 1: Roche 78,000. She wins!

While we patiently await a substantive response from Roche Pharmaceuticals on this topic, thanks to Monique Doyle Spencer, the word is spreading about a simple antidote to the painful and disabling hand-foot syndrome side-effect of the company's important cancer drug, Xeloda. Look at this example, from someone named Shin. An excerpt:

I tried the henna remedy for chemo-induced Hand-Foot Syndrome last night and it worked!

Granted, my feet had already begun healing, so there were no more open bleeding or pus-oozing wounds, but the skin was still very thin, raw, and tender (and peeling off in small patches), that I was still having some trouble walking.

I'm scheduled to start a new chemo regimen in two days, so I was worried that my feet weren't ready to take the new onslaught of chemo and Hand-Foot Syndrome, but after just one night with the natural henna remedy, my feet feel ready to take it on!

So Monique, with no financial resources and just the power of an op-ed article and her own blog, seems to have had more influence in spreading the word about this antidote to a painful and disabling side-effect than Roche Pharmaceuticals. For fun, do a Google search on any combination of Xeloda, henna, hand-foot syndrome, and see for yourself. After the original journal article by some scientists from Turkey, most references to this topic derive from Monique's initiative.

I am trying to be considerate in how I write this, because I know that pharmaceutical companies do marvelous things in terms of drug development and availability, and I also know that they are subject to all kinds of regulatory constraints and legal concerns. But is there anybody at Roche among its 78,000 employees who cares about this topic as much as this cancer patient from Boston?


e-Patient Dave said...

This is a great example of how patients can now simply circumvent the whole blasted system, especially when it's completely unresponsive to our needs.

For the past month I've been digesting the e-patient manifesto, writing chapter synopses now that I've spent 7 months actively engaged with the whole subject. The reflection has sort of stopped me in my tracks, because at its root it's all about a complete shift in the balance of power, enabled by access: who has access to vital information, and who can "publish" info, just like this.

For those who follow tech trends, I think we're seeing a complete disruption of an unresponsive industry. I'm only beginning to grasp the consequences.

Many congratulations and thanks to Monique, and thanks to you, Paul, for encouraging her by publishing her book in the first place. I recently gave a copy to a friend who was just diagnosed, and it's helping her assess her options as she faces a future she didn't want.

Power to the people.

Anonymous said...

I doubt that any drug company personnel will comment. The FDA rules are extremely strict and the potential penalties quite draconian.

Any statement of any form in any media that could be interpreted to be a drug recommendation is subject to FDA regulation. It must be consistent with the statements made in the drug registration approved by the FDA. You go beyond that at personal risk. So the employees might agree and care deeply, but they dare not comment.

Henna is not an approved drug, so almost any statement is a problem. A drug company employee could safely say that it would be nice for someone to run a clinical trial and obtain the FDA approval. But to even imply efficacy would be a problem.

Non-employees (doctors, patients, etc.) are not subject to these rules. So it's no surprise that Monique has more influence than drug companies.

e-Patient Dave said...

Hi, Fairhavenhorn. I can see how this might be the case, and it leaves me wondering if there's any hope.

Otoh, why wouldn't they just SAY so? We've raised that question here a couple of times already.

Regardless, I increasingly find myself offering one outreach to a company and then, presuming I get no useful response, just going around them.

KDPaine said...

This is a perfect example of why I am SO grateful to you for writing your blog, and another reason why I use you as an example for my clients every day. I was on Xeloda for breast cancer (part of a trial at DFCI) and couldn't finish the treatment because of HFS. I wish I'd known about henna, because I've always worried that without that last treatment, did we get everything. So lets here it for power to the people and the bloggers. Sadly I'm sure there are employees at Roche that would love to help, but some idiot in legal or corp. comm makes sure that the company isn't listening.

Anonymous said...

Henna has so very many healing properties and reading about how it's used in this way it just solidifies the fact that it is a healing herb. I don't think Henna is or would be classified as a drug though. Tired of hair dyes which have amounted to my thinning hair, I switched back to henna two years ago and have never looked back. Not only has it restored and promoted thicker hair, it conditions, prevents dandruff and covers my greys the natural way.