Tuesday, August 8, 2017

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.

Thursday, June 1, 2017

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?

Friday, January 8, 2016

Wall St. Journal on Myeloma

First of all, my apologies if you are concerned because I haven't posted anything in a long time.  For the purposes of this blog, you my assume that no news is good news.  I think I communicate with most of you on other forums, so I'm hoping it comes as no surprise that  I'm doing great.  The myeloma remains in remission. My number continue to be good.  And while the word "cure" is not one typically associated with this disease, there is no evidence of any bad cells floating around in me.  So..as long as what caused it to happen doesn't cause it to happen again, I'm in good shape.

As of now, I'm on 10 MG Revlimid and 25 mg Prednisone.  For those of you in the know, 10 mg is still a therapeutic does of Revlimid and Dr. V admits that he is being somewhat aggressive with my treatment.  He did agree to reduce it from 15 MG when I complained of some digestion issues.  The Prednisone is a welcome alternative to the more commonly used steroid, Dexamethasone.  It is much easier to take as it does not have the wired/tired extremes associated with Dex. It also doesn't make me into a raging manic (which Dex does) and it doesn't seem to affect my appetite.  Aside from the digestion problems, which have not dissipated with the lowered dose, the only real side effects I am aware of are occasional cramps in my hands and feet.  But they are infrequent and mostly tolerable.    All in all, I'm very pleased with my state of affairs.

This week, the Wall St. Journal printed a very well written article on Myeloma.  Accompanying the article is a video with most of the same info that I just stumbled across from 2013.    I'm providing links to both here.


In the video, Dr. Brian Durie, whom you may recall was the 'tie breaker" when I was trying to decide on whether or not to have a stem cell transplant,  says two interesting things:

  1. 1) Average life expectancy is now up to 7 years (from diagnosis, I presume) .  As for me, I was diagnosed in July 2006, so I'm approaching 10 years.
  2. 2) He expressed optimism that a "cure" is actually achievable.  The "C" word is being bandied about now by the two research based foundations that focus on the disease, and by some of those who treat the disease, most notably the ones currently or formerly associated with the UAMS Myeloma Institute who promote a Total Therapy program which I describe as a "kitchen sink" approach intended to wipe out the disease in their patients.  

My transplant was on February 7, 2012, so my 4th birthday is coming up in less than a month.  I feel good and extremely grateful to be where  I am

Saturday, October 19, 2013

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 effects.  Blood tests reveal no evidence that the disease has returned.  So I'm cruising along in a comfortable remission.

I was honored to be asked to deliver a keynote address at a celebration event for transplant survivors last week, which accompanies this post.  The event, held at the Skirball Center in LA, was organized and paid for by the head of the Cedars Sinai transplant program.   About 500 people were in attendance, 90% were transplant survivors and family.  Not all were myeloma patients.  And there were many who, unlike me, had allo transplants (requiring donors).

The address is about 6 minutes long.  It is upbeat and positive, as fitting the occasion. I'd like to advise my fellow myeloma sufferers that I struggle with how best to relay my good fortune when so  many of you have a much harder road.  I do feel particularly blessed with how well I've done and I attempted here to simply tell my story...with the thought that it can provide some semblance of hope for those that aren't as fortunate.  Susan felt i glossed over a lot of the difficulties I encountered along the way.  Maybe so.  But be assured that I have not lost site of how difficult the battle is and can be for those who have not had the good fortune that I enjoy.  My heart is very much with you.

Thursday, February 7, 2013

Day 365 - My BMT Birthday

Today is the one year anniversary of my transplant.  In Myeloma circles, this is often celebrated as a second birthday.

The photo above was taken on my actual birthday about two weeks ago when I turned 60.  It was wonderful to be surrounded by friends and family.  But for today, I am surrounded by the warmth and encouragement of the Myeloma community, which had such a large role in helping me get to this day.

I haven't posted anything in quite a while, since there has been nothing important in my myeloma life to comment on.  The post several months have been remarkable only in their uneventfulness (is there such a word?).  But to give you a a quick status:  I'm working full time.  I am playing a lot of tennis.  I am not experiencing anything that can be attributed directly to the disease   My hair has grown back and is now the same color and texture as it was pre-treatment.  I am on a maintenance dose of revlimid and prednisone, which I tolerate quite well with only occasional hand and foot cramps being the primary problem.

I feel extraordinarily fortunate and grateful that I was somehow chosen to be one of the ones who was able to skate through the treatment relatively easily.  Please don't let the matter-of-fact style of this post belie my true feelings about the matter.  I am very very happy with where I am and very optimistic about my chances of overcoming this horrible disease.

Special thanks to the extended myeloma community on this occasion: The team at Cedars... particularly Laura, who was such a helping hand when it was needed and Dr. V, who performed the magic.  Also to the group at Cancer Care in Redondo Beach for making me feel good about coming in for chemotherapy.  Also to my friends in the blogossphere, especially Nick and Pat, who continue to fight their own battles while serving as clearinghouses for others fighting the disease.

Damn, that sounded like an Oscar acceptance speech.

Anyway, Happy Myeloma Birthday to me and fervent best good wishes to all who suffer from or work to cure Multiple Myeloma.

Sunday, October 14, 2012

Update - 6 months post transplant

October 2012
February 2012

January 2012 

Sorry it's been so long.  Hope I didn't' get anyone worried. I'm doing fine.  In fact I'm doing more than fine.  I'm doing phenomenally well.  It now been six months since the transplant, and I am in what is Dr. Vescio is calling SCR - Stringent complete remission.  That is a step above complete remission and a step below cured, which is not a viable step yet for myeloma.  My most recent biopsy did not show any active cancer cells.  So as long as things stay that way, I'm home free.  However, I can't be considered cured because whatever caused my cells to mutate could still be part of my constitution and could cause them to mutate again. But Dr. V, who is generally not a "cheerleader" type, did say that my chances are very good, especially since my chromosomes are still testing normal.    So, it's business as usual.  I am working full time, playing tennis, and riding my bike as evidenced above.

As for hair, it all fell out in February, but is now back.  It came back full.  It came back the same color (mostly dark with touches of grey).  And it came back very curly.  The most recent picture is somewhat distorted as I have "helmet hair" from the bike ride.  But it is quite wavy.  I didn't like it much as first, but  - pardon the pun - it's growing on me.

As for post transplant treatment, I am on a maintenance program of Revlimid and prednisone.  The prednisone is very low dose and it does not seem to affect me at all.  It is far more tolerable than the dreaded dexamethsone, which every cancer patent will tell you is nearly as bad as the chemo.  The Revlimid is a pretty serious drug.  It is a derivative of Thalidomide, which you may recall was given to pregnant women in the 1950s to treat nausea, but resulted in serious birth defects and was taken off the market as a result.  It has proven to be a very effective treatment for myeloma and Revlmid is a rather defanged version of Thalidomide   But it does come with a host of potential side effects.  I've been tolerating it very well, with the exception of some hand and foot cramps that are bothersome but not frequent and not by any means horrible.  Retail price for Revlimid is $900 for a 21 day supply.  Thank goodness for good health insurance - my price is $100.

So, overall, I'm doing very well.  By God's grace I'm doing a lot lot better than most people who are afflicted with Myeloma and/or been treated with the transplant.  Some of my fellow travelers still are recuperating 6 months or more post transplant.  Many don't have nearly the outcome that I have been blessed with.

So, at this point, life is good.  I'll try to continue to post periodically, but if you don't hear from me for awhile, please assume it is because I don't have much to say....as opposed to something bad going on.

By the way....I've been featured in my good friend and fellow traveler Pat Killingsworth's blog.  Pat is has fast become the national clearinghouse for all things myeloma.  He asked me to put together a chronicle of my journey  which  I did in five parts.  None of it will be news to any of you who have been following along here for any length of time.  But in case you are interested, here is a link to the final installment.  Chronicle Part 5  You can search on the rest if you care to by typing my name into the search field on Pat's site.

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 http://multiplemyelomablog.com/