Tuesday, April 10, 2007

Mayo = Awesomeness

Yet another phone call update:

Because I was getting so frustrated with the cancer center here, I called the Mayo Clinic with my questions. WOW. I was instantly -- like, within a minute -- put on the phone with a nurse. I could tell she knew a lot about Revlimid, and she answered all of the questions I had. She agreed with me that I need to have blood tests at least every two weeks instead of once a month. Unfortunately, she wasn't able to answer a lot of questions about the Coumadin, so that remains the one thing I'm anxious about. I'll be sure to ask a lot about that when I meet with the nurse practitioner here. I'm feeling a little bit better now.


Someday soon this blog will go back to being all about silly sock puppets, I swear.


A mom said...

Dear Karen,

Even better than sock puppets:


Kick cancer's butt!!

gina said...

I would also encourage you to take advantage of the great people on the IMF hotline. They have been a big help to my family. As for coumadin, you may already know there are specific foods you should not eat while taking it. Green leafys, for example. Vitamin K interferes with coumadin absorption or something. A good question for the hotline folk since it is a standard Rx for many myelomics. Keep up the good work with the butt-kickin!

The IMF Hotline 800-452-CURE (2873) is staffed by Nancy Baxter, Debbie Birns, and Paul Hewitt.
The phone lines are open Monday through Friday, 8am to 4pm (Pacific Time).
To submit your question online, please email TheIMF@myeloma.org.

Karen's mom said...

Yay, Mayo! So glad the questions are getting answered. The KC clinic will be calling YOU to get up-to-date information. Press 1 if you want Revlimid info. Press 2 if you want sock puppets...


Anonymous said...

Too bad you are so far from Mayo. Richard gets his by Fed Ex from there. Kim RN, the queen of Revlimid calls him and does the survey every month. He gets boodwork here and they fax it to Mayo. No coumadin either, just on adult aspirin every day. I think that's the preference of the prescriber.

It will be worth all the trouble if you get as good a response as he has. Last m-spike 0.4.

Beth said...

Hi Karen,

While I was on Thalomid and Revlimid, I took warfarin. It was no big deal at all. While on thal, I was on a therapeutic dose (11/12 mg a day) and had to have my blood tested at least once a week. When I was on rev, I just took 2 mg a day and didn't have to have frequent INR testing.

About leafy greens... it's true they can affect how coumadin works, but what they tell you is not to avoid those vegetables. Just don't change your eating habits dramatically. If you always eat 1/2 lb of spinach a day, continue doing that.

Everything will be ok! Let's see that Revlimid get you a durable remission.

Oh, BTW, I have an appointment at the Mayo Clinic on May 9th. I'm looking forward to a new chapter in my life with MM.