$5250 a month for Revlimid?

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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.

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Rev/dex update

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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.

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Old Guys With Guns

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US VP Dick Cheney, while hunting quail, shot a fellow hunter by accident over the weekend.

According to the AP, “The accident was not reported publicly by the vice president’s office for nearly 24 hours, and then only after it was reported by the Corpus Christi Caller-Times on its Web site Sunday.

McBride said the vice president’s office did not tell reporters about the accident Saturday because they were deferring to Armstrong to handle the announcement of what happened on her property.”

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Are you a Food Lion shopper?

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The Moore County Relay For Life has been signed up with the Food Lion Shop & Share Program. If you go online and enter your MVP card #(it takes all 12 digits, you have to look close) they will share with us. It does not increase your bill. just go to http://www.foodlion.com and click on add or register MVP cards. You can also print sign up sheets and fliers. Thanks to LaVern for thinking to do this!

When you have to choose a state, choose NC. Then choose Carthage as the city. From there, the rest is easy.

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Taxes

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Can you believe I already have my tax stuff to the accountant for 2005? And it’s not even April! Or, for that matter, any extension deadline thereafter!

In the US, the tax burden is born by the middle class. If you have broadband, please take some time to watch this episode of PBS’s Frontline, called Tax Me if You Can.

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Daytona 500

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I just got a call from my brother, who is working at the Daytona 500. He says Daytona Security just backed over the Budweiser dog and killed it! :( This isn’t something you’ll see on the news, but you heard it here first!

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Late night

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Last night we worked on programming a router for DSL. I made a mistake that made us have to stay several hours longer than we really needed to. I hate when I do that! I was in a fog though, from being tired and on dex. It’s not really conducive to doing good work. We left about 3:30 am, and I was able to sleep almost immediately when I got home. I slept until after 2:00 this afternoon! I could go back to bed now, but I hate wasting so much sleeping.

I start my 4 days off of dex tomorrow. Thank goodness. I like the days off. After a few more months, I’ll go to taking dex for just 4 days a month (40 mg each day). That will be a relief. One thing dex does do though, is help with aches and pains. I’ll notice that, for sure. I have some arthritis which will ache more.

My blood sugar has been good this time around. Still high for me, but better than in the past. For example, when I woke up this morning, it was 102 mg/dL. There have been times in the past when it was near 200. Usually, I can expect it to be somewhere between 75 and 90. After a meal, it can go to 130 or so. When on dex though, look out! It can go as high as 230. I keep on walking and avoid simple carbs and sugars to keep it as low as I can.

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Results!

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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.

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