RIP Big Boo

Read the news that Don (Big Boo) Baylor passed away.  He was a great baseball player and bravely fought multiple myeloma for 14 years.  In 2014, his team, the Los Angeles Angels celebrated what were then the only MVPs in club history by asking Vladimir Guerrero to throw out the ceremonial first pitch and Baylor to catch it. Guerrero’s throw was low and away, and Baylor’s right ankle gave way.  He limped off the field and was taken to the hospital where he learned his leg was broken.  It was the cancer, of course.  This is sad news, indeed.  He was a great player and a great human being.

As for me, a few updates.  After suffering from some nasty side effects (frequent diarrhea and muscle cramps) I visited with Dr. V and he suggested we take a medication break.  So, the Revlimid is suspended for now and I’m only taking Prednisone – every other day.  I plan on visiting with Dr. V again when I return from a vacation at the beginning of September and at that time we’ll determine whether to back to Revlimid, try something else, or just stay with a steroids-only regimen.  Dr. V did say he has several patients who had gone to steroids only and were doing well.  That would be wonderful, of course.  But obviously I’ll want to stay with the best regimen that maintains my remission even if it means dealing with some side effects.  So…we’ll see.  Meanwhile, I’ve been off the Revlimid for about 3 weeks now.  The side effects have diminished considerably and I’m also sleeping a lot better.  I was waking up in the middle of the night previously…unable to get back to sleep.  This could be due to the medication adjustment or to the fact that I’ve begun a practice of daily meditation.  Whatever it is, it’s nice.

A Long Overdue Update

First of all, I’m doing great, thanks.  Been getting quarterly checkups and all my numbers are good.  No evidence of cancer cells in me.  So…as long as what caused it to happen doesn’t cause it to happen again, I’m good.  Thanks to everyone for their thoughts and prayers and efforts to fight the disease through research and funding.  I am eternally grateful. 
I retired from work exactly one year ago today.  I immediately went into training for a bicycle ride from San Francisco to Los Angeles in support of the Arthritis Foundation.  I completed the ride in October and it was a spectacular experience.  The commitment to exercise resulted in my losing about 15 pounds.  Haven’t felt this good since my college days!  And, as a byproduct, I was able to jettison many of the medicines I had been taking.  I’m no longer on statins to control cholesterol.  My HDL, LDL and triglyceride numbers are all within the normal range without the meds.  I also was able to get rid of anti-depressant medication and reduce my blood pressure control meds considerably.  And although the steroids I need to take as part of my MM treatment sill result in some increased glucose levels, it was agreed that I could safely eliminate metformin from my medicine regimen.  (NOTE:  Don’t try to do ANY of this yourself without talking to your doctor!!!!!).  As for MM meds, I still take Revlimid and Prednisone…. which almost seems like a rather quaint approach given all the new med coming out.  But the general agreement is that “as long as it ain’t broke, don’t fix it”.  Plus, I’m not having any real bad side effects.  The one fail…I tried to get off of my reflux meds.  Ended up in the ER.  Looks like those will be around for the long terms. 

Bottom line to all of this…Exercise is good!

Retirement suits me well.  I know some people worry about what they will do with themselves if/when they stop working.  My experience has been just the opposite.  I sometimes muse that I should consider going back to work so I don’t have to work so hard.  I keep busy with my daily exercise routine…which is actually anything but routine…alternating between bike riding and tennis with an occasional hike or yoga session thrown in.  I volunteer with several groups…, most notably the UCLA Hospital Institutional Review Board (IRB) (at the suggestion of Dr. Gottesman for those of you reading this from the Downstate program).   In this role, I review clinical studies in oncology for ethical compliance. 

I did come down with a case of shingles recently…which was no fun at all.  Most common question was…did you get the vaccine?  The answer is…. yes, but over 10 years ago.  And I’ve been advised against getting the vaccine again because it involves a live virus and since MM meds suppress your immune system, it’s a bad idea. So, I ‘ve had to take my chances and my number came up.  Here again, don’t let my experience dictate yours.  Talk to your oncologist about shingles.

That’s all for now.  I will try to be more frequent with updates.  But I always say that, right?

Keynote Address

Sorry if I caused any concern by not posting anything for awhile.  I’m in sort of a “no news is good news mode.”  But be assured I continue to do well.  I’m taking my Revlimid and Prednisone as prescribed and having no significant side e…

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.