Sunday, March 13, 2011

MS Awareness Week

The NMSS "MS=" Campaign

Well we're just about here again, MS Awareness week, and I have a whopping big sign on my office door, tho not everyone at my job knows I have MS. The ones that matter do, the others might be a little intrigued, but for the most part I no longer care.

I do like the NMSS' "MS=" campaign, but there so much that MS can = for me, and I'm not very pithy lately.

Perhaps MS=frustration at myself and also others for not seeing that I am, actually, not entirely well/healthy/fast. That would definitely go beyond one week or one month. But in any event, it's all an intriguing campaign and I wonder who out there knows what "MS=" for them. I'm sure it's ever changing-- it is for me!

Thursday, March 10, 2011

Inspired by a blog

I'm a little tired lately, having gone back to work part time for 8 weeks before smacking head on into fulltime teaching again. I'm sure the 8am class isn't helping, but I am glad to notice I'm mostly on the ball.

I was reading a blog (MSLOL radio)which was speaking of show tunes, and the "Try to Remember" from 'The Fantasticks' was highlighted. I do like the song, but i also now associate it with Jerry Orbach singing it post-9/11 in NYC.

So there's a bittersweetness to it for me, as beautiful as it is (particularly as Jerry sang it -- Jerry, we miss you!), an autumnal feeling of both beauty and a deep longing for the things already past. I guess it just put me in mind of the wistfulness I've been experiencing lately. The general overall slowing of my physical self and to some extent my brain is really a different experience. I have been feeling some leg weakness (as I did in 2008) and def. some brain fog, but I still think for the most part I cover it well enough. I still say that i would retire tomorrow if I could.

As it is, two cats have been ill, Bear's Lipitor copay went up, and I have no idea how we'll cover our medical bills. Naturally, that will lead to worse credit, which will lead to yada yada yada. I'm so over my country some time. I know we can be the very best at so many things, but I tell you, MS will smack any national or local shortcomings right in your face.

So I try to remember that last september.. it's not easy, and it has been scary lately. I still am very glad for my MS doc and clinic, but oh so wanting to leave this place behind me, dust, sand, and all.

Happy MS Awareness Month, dammit... wish it never had to come again!!

Thursday, March 03, 2011

FDA rejects Oral Cladribine

From Medscape-- not sure how to take this, given its checkered history, but at least Russians and Aussies can get it:

FDA Rejects Oral Cladribine for Multiple Sclerosis

Allison Gandey

March 2, 2011 — The US Food and Drug Administration (FDA) says it won't approve oral cladribine (Movectro, Merck Serono) for multiple sclerosis (MS) without more safety information. Merck announced today it received a complete response letter from the agency calling for additional analyses or new studies.

The company says it plans to request an end-of-review meeting with the FDA to clarify next steps and to identify whether data from completed and ongoing clinical studies can address the questions.

The FDA decision is the latest in a long line of disappointment for the new drug in the race for first oral agent for MS. Cladribine was initially granted fast-track status by the FDA in 2006, but the agency refused to file the company's new drug application in 2009 amid speculation about tabulation errors and potential safety concerns.

Oral fingolimod (Gilenya, Novartis) beat cladribine to market for relapsing-remitting MS. Other oral MS treatments in development include laquinimod (Teva), teriflunomide (sanofi-aventis), and BG-12 (Biogen).

Cladribine was recently approved in Russia and Australia but received a negative opinion from European regulators in September that was reiterated in January.

Increase in Cancer Cases
The European Medicines Agency said it was concerned about the increase in cancer cases seen in clinical trials with treatment. Regulators also complained the benefits and most appropriate dosage had not been well established.

The company says it will remain committed to completing the ongoing clinical trials of cladribine. These trials, already fully enrolled, will provide additional information on efficacy and safety.

Top-line results from the CLARITY (CLAdRIbine Tablets Treating MS OrallY) extension study and ORACLE MS (Oral Cladribine in Early MS) study are expected by the end of 2011. Top-line results from the ONWARD (Oral Cladribine Added ON To Rebif [interferon beta-1a] New Formulation in Patients With Active Relapsing Disease) study are anticipated in the first half of 2012.

"We look forward to working with the FDA to address the safety issues in its letter," Fereydoun Firouz, president and chief executive officer of EMD Serono, said in a statement.

"We will continue to move toward identifying a path that provides patients and physicians the opportunity to have access to cladribine tablets in the treatment of MS."

Wednesday, March 02, 2011

Upon entering the AZ Dept of Rehab... find that while they are very willing to help, for literally 2 years they have been so underfunded everyone, but EVERYONE, is now on a waiting list for assistance. Bear's hearing loss is enough to make him a possible "Priority 2" for job assistance, assistive technology, etc, but of course, they're not really calling Priority 1 folk, who may have, say, lost a limb in an industrial accident.

I understand on the one hand, and on the other I'm furious that there is so very little AZ can do or has been able to do to help people who need it, especially if they don't fall, say 200% below the federal poverty limit. Sure, we have insurance, which I pay exorbitant amounts to so Bear can be covered; sure, we have a home which we won't be able to sell in the foreseeable future in order to move to a better/nicer/wiser/more beautiful place. Sure, we have food-- thanks, Mom, for being sure I had a fear of running out of food. I've never come close, except that one time I had only ketchup and a jar of peanut butter a day before payday. But these are the people who are gently having their lives chipped away, hanging on before bankruptcy, unable to borrow from job retirement funds or facing unreal penalties for doing so-- these are the people in whom the "bird of hope" perches and pecks away at their hearts until they expire, wondering "what happened?"

Dream on, dream on.