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.

VideoArticle

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

video
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/


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.

Friday, May 4, 2012

The Maintenance Issue

My hair is starting to return.  In fact, you could not accurately describe me as bald anymore.  I’m now a guy with REALLY short hair.

Met with Dr. Vescio at Cedars yesterday.  We covered a lot of ground.

With regard to my present state, he is very pleased with my blood numbers.  I’m pretty normal there.  He was also very pleased to review my biopsy and commented that I’m “clean as a whistle.”  I brought up some small complaints….I still get rather fatigued late in the day.    Dr. V suspects that it could be a lowered level of testosterone and gave me a shot to address that.  He also ordered another blood test to determine if this is indeed an issue.   I also have a lot of soreness in my joints, which we know is an effect of steroid withdrawal.  He said that could go on for weeks or months.  I also advised Dr. V about some issues regarding my daughter that are causing me a great deal of stress.  He was quite concerned about this, as stress is known to weaken the immune system and can actually give myeloma a jump start to remission.  It is something he wants to closely monitor.

With regard to maintenance therapy, we had a very open and considered discussion.  Dr. V, to his credit, did not knee jerk into a recommendation to go on maintenance drugs. He felt that my myeloma was less aggressive than most so it may be just fine to go on without any additional therapy.  However, he did say that the disease WILL relapse at some point.  He was pretty emphatic about that….didn’t say it might relapse.  He said it will.  The question, of course, is how long and there is no answer to that.  However, he did bring up some food for thought:
  1. Generally speaking, each relapse is harder to treat as the myeloma cells become more resistant to treatments.
  2. There are studies out indicating that a maintenance regimen of Revlimid (a thalidomide derivative) combined with steroids can double the time before relapse and can also improve overall survival.  So, for example, on average, if I were to go for 5 years before remission without maintenance, I could be expected to go 10 years with maintenance.    The trade off is that the drugs can have some significant side effects….so it can be a trade off between quality of life and…well…life.  Problem is, there is no certainty to any of this.  I could eschew the maintenance therapy and live forever; or I could get on the therapy and relapse in a year.  So it is all a matter of playing the odds based on the experiences of others who have the disease, went into remission, came out of remission, got a transplant and went forward with or without Revlimid and steroids.  None of them, of course, has the exact same disease profile as I do…which does seem to be not only less aggressive but also, significantly, quite responsive to therapy.  After considerable weighing of alternative, it was agreed that I would start out with the maintenance program and see how I respond.  If I do start having a lot of discomfort, we can either lower the dosage or suspend it altogether.

So, starting in a few weeks, I’ll be on 15 mg of Revlimid every day for 3 weeks at a time and then off for a week.  I’ll also be on 50mg of prednisone every other day….a considerably lighter steroid load than the 40 mg of dexamethasone I was ingesting weekly during my last remission (50 mg of Prednisone = 7.5 mg of Dex).  The steroids should not affect me much and will probably have the positive effect of mitigating my joint soreness. 
As for the Revlimid, there can be some pretty significant side effects.  The biggest caution is that you can’t take it if you plan to have children.  You may have read that thalidomide was widely prescribed to pregnant women in the 1950s and resulted in major birth defects.  I am not in a procreation mode, so that is not an issue.  However there are some others.  It can result in blood clots.  It often brings muscle cramps (charlie-horse cramps are common). It can bring moderate to severe neuropathy.  Some people get very constipated, others get diarrhea.    Some have no digestive problems at all.  And it often results in fatigue.  These are not the small print worse case symptoms that the drug manufacturer is required to disclose even though very few people experience them.  These are very common symptoms.  I know several people who take the drug that experience cramps, neuropathy, digestive issues and fatigue to significant degrees.    So it will be a whole new ball game for me.  Again, I have the ability to opt out or reduce the dosage.  So we’ll see how it goes.  It is a bit daunting.


Meanwhile, my recovery is still going very very well.   I'm back to work nearly full time.  I play tennis every weekend.  Ride my bike, etc.  As I mentioned, I do get tired later in the day and I’m sore from the steroid withdrawal, but other than that, I’m back to living a pretty normal life.