Wednesday, June 27, 2012

My Story on Pat's Blog

The myeloma community is quite active on the web.  Perhaps the most prolific and universally followed blogger is Pat Killingsworth....a fellow Badger who now lives in Florida.  Pat updates his blog daily and has written several books about his myeloma experiences.  He as been a source of help and inspiration for patients and caregivers around the world.  Pat and I have not met, but we've become friends via the blogosphere.  Pat asked me to contribute a chronicle of my story for his blog and it has been running for the past few weeks.  Today's installment can be accessed here.  Those of you interested in the topic should check in regularly with Pat's blog at

Sunday, June 3, 2012

Revlimid and Hair Update

As you can see, my hair is coming back….

I started on Revlimid as a maintenance drug two weeks ago.  Revlimid is one of the two major novel agents that have been widely used over the past five years to combat myeloma (the other being Velcade…which I’ve had twice already).  As discussed in a previous post, Revlimid is being used as a maintenance therapy to try to keep the disease in check.  It is typically combined with dexamethasone for ultimate affect, but knowing how much I hate dex, my doctor agreed to use a low dose of Prednisone instead.  Revlimid works in multiple ways to slow or kill myeloma cells, although the exact way in which it works is not completely understood. It directly affects the tumor cells. It is also known to affect the blood vessels and other substances surrounding a tumor (known as the tumor microenvironment) which help to feed the cancer cell's growth.   It is a derivative of Thalidomide, which you may have heard was used to treat morning sickness in the late ‘50s and was withdrawn from the market after being found to cause some major birth defects (deformed limbs, etc.).  It’s a powerful drug and is associated with many ugly side effects, many of which have been verified by patient/friends of mine using the drug.  As I write this, I’m on day 14 of my Revilmid ingestion.  So far, no problem.   I’ve also been taking the Prednisone for over a week and I’m pleased to report that I’m not able to detect any symptoms but that it is helping to alleviate the steroid withdrawal stiffness I’ve experienced so far. 

As for my scalp….my hair is growing.  Slower than I’d like, but there is definitely observable progress.  Those who haven’t seen me in a while remark that they like my new short hair-do, as though I did this by design.  I went out and bought a comb today!

Beyond that, I’m doing quite well and grateful for how well I’ve recovered from the transplant.