Monday, March 31, 2014

Myeloma..Hate It

It's a Monday morning. I'm at work. The emotional crash from the dex is in full effect. Hate, exhaustion, depression are all hovering around me. Tomorrow it's back to treatment. Tuesday and Friday of this week.  Then I get a two week break from treatment.  But here's the deal. I talk a lot about about the benefits of this cancer. We've talked about it in my cancer class. I'm a better person. I appreciate life more. blah, blah, blah. 

But the fact is I have an incurable cancer. I had a minor relapse recently. That's the thing about myeloma....generally it's going to come back. When is really the question. We're staying ahead of it.  I'm saving the big guns, the new drugs for later. For now, I'm doing what worked previously.  But this shit sucks.  Fricking emotional roller coasts. My energy is all over the place....remember I'm constantly anemic. Low on blood all the time. 

Leslie and I went on a long training walk yesterday in preparation for the BolderBoulder 10k.  The treanda, revlimid and assorted other drugs mean my leg muscles never really loosen up. They are always tight.  Speed is not something I can acheive any more. But I am doing the 10k because I can, and others cannot. Some day I may not be able to. Catching Multiple Myeloma is like a fast forward to being old.  I went from youthful to old & slow in a blink of an eye. Weds is 35 months since my diagnosis. We're coming up on 3 years. Pretty darn impressive, considering we couldn't find a drug that worked at first and considering Berenson at one point thought I wouldn't make it past 2011.

So I'm still here, That's good. But with my crash today, I'm really hating this crap.  I might get a little less active with the blog. Even updating folks on my status is getting old. This is getting old.

Don't worry everyone, I'll bounce back...emotionally. But today, I'm keeping it real as can be. And the realness is that I've got myeloma, I've been doing chemo for 3 years and it's going to keep on going for a while.

Saturday, March 29, 2014

What Can I Say?

Yesterday was day 4 of Treanda the Sequel.  After day 1 earlier in the week, I had to go to work and  I had horrible steroid rage. Probably the worst I've had the whole time I've been on treatment. Lots of apologies and warnings to coworkers.  Today, I'm hiding at home to avoid anything that might set off another round of anger.  The crash however wasn't so bad.  Recently I was prescribed a medicine called NuVigil, which acts as an upper and can counteract the tiredness and fogginess that accompanies the dex crash.  This week I had key presentation to make at work and was feeling pretty brain drain. Half a tablet and I was up, my brain was working and I dominated in my presentation.  Anyone else take the stuff? We asked Phan and Berenson about it. Phan was good with it, as was Berenson, who said he has a number of patients who take it to counter the dex.  Both said its non addictive.

Speaking of Berenson, He has his non-profit, The Institute of Myeloma and Bone Cancer Research, for which Team Goldman is raising money for.  Team Goldman is me, Leslie, my mom, my brother Seth, his wife Nancy, nephew Dillon and his wife Jacquie, niece Destiny and her husband Justin and their adorable baby boy Liam Matthew.  Also doing the race are Seth & Nancy's kids, Megan, Jared and Emma. The race is May 26, 3 weeks after my third cancerversary. May 2, 2011 was diagnosis day. To donate to Team Goldman and to help with continued research into finding a cure for Multiple Myeloma, here is the link:

With regard to dates:
- April 2 is 35 months. Any suggestions for my number 35 representation? Think up!
- May 3, the day after my cancerversary, I'm leading a bike tour of the port as part of Long Beach's Annual Bike Fest. I haven't done a port bike tour in a few years, but they are real fun and gives folks a chance to see the industrial port by bike, a not common occurrence.

My buddy Brad recently posted about how he had normal night out with friends, as if his cancer didn't even exist. I also had this experience last week And it was awesome, not having cancer or myeloma on the mind. Just hanging out with friends, watching basketball, having a couple of beers. Myeloma gets to be a boring topic, but no escaping it ...well there are escapes. Guess we need to get our mindset into the normalcy mode.

Here is a picture of Gracie's fur, showing grey hair coming in. Do not like, it means she is getting older.
And here is an image that I see on facebook once in a while. Hate it. Passive aggressive, condescending, and perpetuates misperceptions about cancer patients. I want a new house, new car, new phone, to lose weight, and beat cancer.  Yes cancer sucks but survivors also want normalcy and to live life. Plus what's with the passive aggressive way of telling friends if they don't repost then perhaps they are not worthy of being friends.  Am I being too harsh? Thoughts?

One last thing, as I was writing this, we had a little aftershock. Last night there was 5.1 earthquake centered in La Habra, perhaps 20 miles from Long Beach. It shook good, but no damage, no problems. Just a little reminder that earthquakes are lurking. 

Wednesday, March 26, 2014

March 28 Cure Talk on Clinical Trials

This Friday, March 28, there is a Cure Talk panel discussion on Clinical Trials with Dr Robert Orlowski as the guest. Dr. Orlowski is the Director of Myeloma, and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas.  Dr Orlowski provides a lot of myeloma information on Twitter using @myeloma_doc

The panelists are Gary Peterson, Jack Aiello, Pat Killingsworth, and Cindy Chmielewski.

The link to register to listen is:

Tuesday, March 25, 2014

An Update from Pat Killingsworth

Pat is a myeloma survivor who recently relapsed. He's a vocal advocate and has written a number of books on multiple myeloma. Here is his latest blog post about how he is approaching and attacking his relapse.

Saturday, March 22, 2014

March Madness

March Madness is underway. UCLA won their first game and Duke lost their first game. Both good results. We have a Blood Cancer Bracket Challenge going with 70 participants. My bracket is crap after two days of games.  Half of the money is going to the LLS and the other half goes to 1st, 2nd and 3rd.  70 participants at $20 each means we're sending $700 to the LLS and dividing the remaining $700 among the top 3.  That is a good amount of money.

I'm wrapping up my two break from treatment. Tuesday will be day one of cycle 2 of Treanda the Sequel. As I said in the previous post, test results after the first cycle showed positive results. I am anticipating more good results next month.

Thursday night Leslie and I went out for sushi. We ran into friends at the restaurant. Last night, I met an old friend, David Olivo, at Buffalo Wild Wings to watch the UCLA game. Before kids and marriage, and before being old, we used to watch a lot of sports together and have a lot of beers together.  Our beer intake is much reduced, but it really felt like a total slice of normalcy.  That alone made me real happy. Two nights in a row of regular living. Very nice indeed.

A reminder that on May 26, with my family, we're doing a 10k to raise funds for myeloma research. In this case the funds are going to the Institute for Myeloma and Bone Cancer Research.  Here's the link if you'd like to donate:

Monday, March 17, 2014

Early Success

Alright, alright, alright. Berenson today. My first Berenson visit since going back on Treanda. One cycle down and it's already doing its trick.  "Excellent" is the word used by Dr B. We measure protein in the 24 hour urine and the percent of that protein that is the bad myeloma protein. Last month: Total protein-2,103 with 63% bad stuff. Today: total protein 1,908 with 54%. Do some math and my counts dropped about 24%. It's only one month, but a good start. Dr B also said that my kappa light chains dropped from 87 last month to 56 this month. He never paid attention before to my light chain numbers, but today he said that is the lowest they have been since I was diagnosed.  So we do a few more cycles of treanda (bendamustine) and then switch back to maintenance. That's the plan.   Next week is the start of Cycle 2: Treanda the Sequel.

I told Berenson that the family and I are doing a 10k in May to raise money for his non-profit research group, The Institute of Myeloma and Blood Cancer Research. He took us to meet one of the Institute's board members to see behind the curtain and see where the magic happens.  It was pretty darn cool. 80% of the donations to the Institute go directly to research, which is a pretty good percentage. I've set a goal of $10,000 for Team Goldman to raise by the time we run (walk) the event. Interested? Well, here is the link to read more and to donate:

Lastly, March Madness starts this week. You've got one day to join the Blood Cancer Bracket Challenge if you're interested. $20 buy in. Half of the funds go the Leukemia and Lymphoma Society and the other half is split 50% to 1st place, 35% to 2nd and 15% to 3rd. Brackets!!!!  It's fun, for a good cause and a chance to make a few bucks.  Send me your email if you're interested and I'll send you the link.

Wednesday, March 12, 2014

Monday, March 10, 2014


It's just about March Madness time. Brackets. College Basketball. Truly one of my favorite times of the year.  If I had a bunch of money and a bunch of time, I'd fly around the country for the first 4 rounds. Or, I'd love to be in Vegas, surrounded by games on tv. The Pac 12 tournament is in Vegas this weekend and I'd love to be there. Go Bruins!!

I did create a blood cancer group on ESPN with the funds being split between the Leukemia and Lymphoma Society and 1st, 2nd and 3rd place in the group. Starting next week I'll have my copy of my brackets everywhere I go.

Last Friday was a Cure Talk about fund raising. The 3 participants were awesome. Brad, Kendra and Cindy are all inspiring and motivating.  I was on the call, and like a fool, I didn't put myself on mute when I wasn't talking. Instead I subjected everyone to all the noises and distractions from my chemo. Oops. Where's my personal assistant telling me to mute? Anyhow, those 3 got me fired up. Fired up to get off the pot and do something. There are great organizations out there and they rely on donations to do what they do. So I gotta do my part.

One of the top teams this season in college basketball is Wichita State. The Shockers. They made the final four last year and this year are even better. 34-0. First undefeated team going into the playoffs since 1991 when UNLV did it. I loved that UNLV team.

Wichita State. Story time. Way back in the 80s I worked for Chuck Barris of Gong Show, Dating Game, Newlywed Game and much more fame.  Basically I was a runner for the production company before I eventually became one of his personal gophers. Car washes, light bulb, books, whatever it took.  I'm guessing a lot of people got their start in the entertainment industry this way. But I was young and dumb and didn't once think about my future and how I might be able to parlay access into a career. I worked closely with 3 people. Joe, Louis, and Danny. Danny was from Kansas. Joe and Louis from Burbank out here in California.  Danny was a Wichita State grad. A Shocker.  So whenever I hear Wichita State today. I think about Danny and those wild days of the early 80s. Danny was a productions assistant with the company and an aspiring actor. I believe he did a couple of cigarette ads.

Anyhow, Danny dated a woman, Adelle, at the company who was also a production assistant and a professional ice skater.  One winter there was a Peggy Fleming ice show in Lake Tahoe that Adelle was skating in. One Friday after work me, Danny, Joe and Louis decided to drive to Tahoe that night to surprise Adelle, see some ice skaters and basically party. The four of us crammed into Danny's VW bug, loaded with drinks and recreational drugs.  We arrived in the middle of night, right when the last ice show of the night was ending. We were feeling good and like young guys do, we were loud and obnoxious, and purposely trying to blindside each other and knock each other to the ground.  Danny knocked me over right as Adelle was walking out of the arena with other skaters. Oops. Not a good way to positively surprise someone.

Early on in my myeloma journey I did a lot of thinking and regretting about the past. Hashing and rehashing things I had done decades ago. Kicking myself for decisions I made when I was younger. How my friendship ended with Danny, Joe and Louis has always bothered me.  I left the production company to go back to college. And when I did that, I broke ties with a whole bunch of people. I thought I needed to that. I needed a drastic shift.  So eventually I lost touch with those guys. 

When I was diagnosed I actually tracked down Joe and Louis. Sent them emails. They responded. But that was it. They have lives. It was a long time ago.  One of the things I work on with my therapist is having healthy beliefs, and looking forward and not obsessing over the past. That's tough to do. I replay so many thing in my heads. So annoying. But I can't do that. It serves no purpose.

I'm on a two week break from chemo. This Friday I do my large myeloma labs, Blood and urine. This will tell us if the shift back to treanda is working.  Next week, we see Berenson to review the results and discuss the path forward. Plan, plan, plan.

Wichita State. The Shockers. They're pretty good in basketball. I can't go back in time to when I knew someone who went to Wichita State, but I can pick the Shockers to win it all in my brackets. Not to tip my hand, but that's what I'm going to do.

Sunday, March 9, 2014

Blood Cancer March Madness

Ok folks, here's your chance to win money and donate to a good cause.  I've created a Blood Cancer March Madness Group. $20 buy in. Half of the funds will go to the Leukemia and Lymphoma Society and the remaining half goes to 1st, 2nd and 3rd.  Send me your email if you want in.

Matt and Team Goldman are doing the Bolder Boulder 10k to raise myeloma awareness and funds for finding a cure.

I was diagnosed with Multiple Myeloma on May 2, 2011. To celebrate the 3 year cancerversary from my diagnosis and to acknowledge the countless others impacted by this incurable cancer, I am doing a 10k on May 26. I am raising funds for the Institute of Myeloma and Bone Cancer Research, which is Dr Berenson's non-profit research arm. Our funds are vital to the continuing efforts to find a cure.

Running and walking with me on May 26 will be my wife, my mom, my brother and sister in law, nephews, nieces, significant others.  This is a truly a team effort. Team Goldman. Below is the link to donate. I thank you all in advance for any help you can provide.

To learn more about the institute, follow the link...

And here is a link to the Bolder Boulder 10k, known as America's best 10k.....

Friday, March 7, 2014


This weekend is the LA Marathon. No I'm not running. But Dr Berenson is, as is his research institute. His nonprofit research arm is the Institute of Myeloma and Bone Cancer Research (IMBCR). This year the IMBCR is an official charity of the marathon. Our local news station did a few segments with Dr B and Team IMBCR.  Here is a link to those segments.

Wednesday, March 5, 2014

Cure Talk Show on Fund Raising

This Friday, March 7, at 3 pm west coast time, 6 east coast time, I am hosting a cure talk on fundraising. Going to try and answer questions about how you create your own event, how you chose a charity, how you raise funds, and more.  We'll have 3 very successful fundraisers on the panel....Brad, Cindy and Kendra. Give it a listen, here is the link to sign up.

A Survival Story from Amy

Amy is one of my myeloma friends and fellow survivors. She is strong and one of the people I look to for motivation and inspiration. She was diagnosed in April 2011. One month before my diagnosis.  We met her and her family last summer at the Yankee game.  I might have told the story before of how at the Boston Marathon last year, her and her family were celebrating the one year rebirthday from her stem cell transplant. They were at the restaurant where an explosion happened. Her family was injured.  The following link is that story in Amy's words.

Tuesday, March 4, 2014

Day 8

It's day 8 of the reinstated treanda treatment.  As expected, my creatinin bounced up from the treanda. Today and Friday are no treanda, so when I do my myeloma labs in a week and a half, we'll see what's really going on.  Feeling good. A bit tired and achy from the chemo. Just need to make it through this week and then i bounce back.

Sunday, March 2, 2014

March is Multiple Myeloma Awareness Month

Below is a great post from Gary Peterson, a myeloma thriver, about multiple myeloma and the importance of Multiple Myeloma Awareness Month.

March is Multiple Myeloma Awareness month, but how does a disease which effects just 20,000 people in 315,000,000 or just .0063 percent of the people in the USA annually, get any attention or awareness? Breast cancer has 232,340 newly diagnosed annually or 11 times more cases but just 2 time more deaths.
Everyone knows about breast cancer and should, but few if anyone other than those effected by myeloma have heard of multiple myeloma. It is therefore really important we work together, or we will not be heard.

We have some outstanding organizations that have helped to create awareness, raise funds, and spearhead drug development. Organizations like the IMF (International Myeloma Foundation), MMRF (Multiple Myeloma Research Foundation), and LLS (Leukemia & Lymphoma Society), and they do the best they can to get the word out, however somehow the average life expectancy remains at just 4 years for the third straight year in a row based on the statistics provided by the National Cancer Institute. In March of 2012, I wrote an article headlined "Why Do People Die From Multiple Myeloma? Lack of Awareness!!!", where I was trying to understand how multiple myeloma specialists had patient survival of 10 years of more but the average for all patients remains at just 4 years. To read the article CLICK HERE.

We also have a number of selfless, generous patient advocates, which include Mike Katz, Pat Killingsworth, Jennifer Ahlstrom, Lizzy Smith, Cynthia Chmielewski, Jack Aiello, Suzierose, Matt Goldman, Nick Van Dyk, Danny Parker, Cure Talk and Beacon contributors, et. al, who work tirelessly to get the word out and raise awareness, all while fighting this disease. We recently got the Tom Brokaw Bump (not a new dance) from his selfless and brave announcement of his condition. Google searches and views of my site doubled and tripled the week of Tom's announcement, but are now back to previous levels. It remains up to the selfless and knowledgeable myeloma advocates and myeloma organizations to continue their outreach efforts because each of these advocates know that a knowledgeable myeloma patient who has a MYELOMA SPECIALIST on their team will outlive the average life expectancy by a factor of 2 to 4, or 8 to 16 years vs. the current average of 4 years. And this 6 years of extra life for the 80,000 myeloma patients represent 480,000 years of life, and another 120,000 years of life with each new year of newly diagnosed.

I question some of the recent headlines in the news lately, but only because I think they need to add some fine print. Some of the headlines are:

Tom Brokaw's Multiple Myeloma Cancer and His Hopeful Future ...

Brokaw's multiple myeloma called incurable but treatable - USA Today

Tom Brokaw Diagnosed With Cancer, Prognosis Encouraging

Tom Brokaw reveals cancer diagnosis; doctors are 'optimistic' - CNN ...

These are all accurate, but only with some qualifiers. For reasons I have yet to understand completely, the prognosis for the average patient is for them to live an average of just 4 years with 20% dying in the first year, and this is not too hopeful, encouraging, and optimistic. The qualifying fine print should therefore read, the future is hopeful, encouraging, and optimistic if Tom has a skilled multiple myeloma specialist on his team, (he does). He goes to a facility that does genetic testing and is extensively involved in clinical trials (he is), is at a facility that tracts survival statistics and knows the results for every type of treatment in use at their facility (they do), is a low risk case which is 85% of cases based on genetic testing (I have no idea what his risk factors are). And, finally some of the most skilled myeloma specialists have stated they believe a minimum of 10% to 40% of their patients will be effectively cured using currently approved drug combinations and a protocol including induction, transplant, consolidation, and then maintenance, or in one case no transplants.

One way for YOU to help with Myeloma awareness is by getting this message out to your facebook, twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post.

The Symptoms of Multiple Myeloma can include:
  • Bone pain and skeletal fractures, including compression fractures of the spine, which can cause severe pain, particularly in the back. A backache that lasts for months can be a signal that multiple myeloma is affecting bones in the spine and/or the ribs.
  • Frequent infections, especially bacterial infections of the respiratory and urinary tracts, which occur because the immune system is weakened.
  • Fatigue, weight loss, and general discomfort caused by anemia (insufficient red blood cells).
  • Nausea, vomiting, altered mental state, depression, and headache, caused by abnormally high calcium levels in the blood (hypercalcemia).
  • Loss of kidney function, leading to fatigue, buildup of fluid in the lower limbs, nausea, and vomiting.
  • Bruising, rashes, nosebleeds, vision loss, headache, dizziness, and peripheral neuropathy (numbness, tingling, and burning pain in the extremities) caused by blood that has thickened (a condition called hyperviscosity) due to high levels of protein.
  • Shooting pains in the arms and legs caused by a tumor in the spinal column pressing on nerves.

In about one-third of patients, multiple myeloma is detected before symptoms appear through routine blood tests that show elevated levels of immunoglobulin proteins.

Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at:


Today is 34 months since my diagnosis. May 2, 2011. Today I present two great number 34s. Walter Payton, aka Sweetness, an all time great Chicago Bear running back who tormented the Vikings for years, and a favorite of Brad Coustan, aka Bradstrong. And Earl Campbell, one of my favorite players of all time. He played for the Houston Oilers (before they became the Tennessee Titans) and was an absolute beast.  In my mind, the greatest ever.

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...