Search: “Revlimid”

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.

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.

I started the Rev/dex EAP trial on the 11th of January. I’m just about to
finish my first cycle. I’m on my 3rd dex pulse and have I think 3 more days
of Revlimid to take before I have a week off everything. On February 8th,
I’ll have my first SPEP and quantitative Ig tests done to see how I’m doing.
I have had one CBC done, just Wednesday, to check how my counts were being
affected by the drugs. My CBCs, as usual, were all in the normal range. I
have only had a very few times in the last 3 years when I was mildly anemic.
It appears that the Revlimid isn’t having any impact on my WBC or platelets
(or anything). I’m hoping that will remain the same.

On dex, I have high blood sugar. It stays under 200, so the doc doesn’t
want to treat. I have been increasing my exercise quite a bit so I can keep
that blood sugar down. Of course I watch my starch intake and avoid sugar
while on dex. On non-dex days, my blood sugar is normal.

The Revlimid has been ok so far. Just a few problems. The first 3-4 days I
had a pretty bad headache. It was enough to keep me in bed, under the
influence of Excedrin, Darvocet, Ultracet and Xanax. Sounds a bit over the
top, I know, but when I have a headache it can turn into a monster if I
don’t use all the drugs at my disposal. :) On days 3-6 I had diarrhea and
stomach pain. After that, things settled down mostly. Now I’m having
constipation, which is nothing I’ve ever had before! I have to say, it’s no
fun. I’ve been downing the fiber and today picked up some herbal tea that’s
supposed to get things going. When I was on thal, I never had that problem,
but was told to expect it. So, this is a surprise for me. I even put fruit
back into my diet, which I had been avoiding because of the sugar.
Typically, I have a lot of vegetables.

That’s it for me for now. I’ll be sure to post my Ig’s and m-spike when I
get them. Going into the trial, my IgA was 2445 mg/dL and my m-spike was
1.2 g/dL. When I was first diagnosed in Jan 2003, my IgA was 4625 mg/dL and
I had 2 m-spikes of 2.8 g/dL and 0.6 g/dL. I think the lowest my IgA has
been 781 mg/dL in September, 2003. That was when I was on thal/dex. I’m
hoping for as good or better results from Rev/dex. :)

Today is the last of my 4 days off from dex. In the morning I’ll start my 4 days on, with 40 mg. I’ve taken dex in the morning and dex in the night. It doesn’t seem to matter so much to me when I take it. It doesn’t seem to have the impact on my sleep that it used to have in the beginning. Of course, I’ve been off of it for 6 months until now, so it may be a cumulative thing. I’ll have to see. The first 4 days (last week) I didn’t have any bad indigestion or sleep problems, so all I can say is yay!

The stomach problems I was experiencing seem to have come to and end. Thank goodness for that, too. All I can think is that if the Revlimid was making me feel so crummy, it had to be making the cancer feel icky too.

I’ve been making myself walk more every day. Dex makes my legs feel really weak, so it’s my job to keep them strong. By spring I’ll be swimming too!