Saturday, May 27, 2017

Is Prevention of Myeloma within Reach?

Below is a link to a blog post on the IMF website. It's written by Dr Durie and addresses possible ways of preventing myeloma. I had a consult with Durie at Cedar Sinai a few years back. I harvested my stem cells based on his recommendation but they've never been used and will likely never be used. I've always wondered why there isn't more research into potential causes of myeloma.

Tuesday, May 23, 2017

You Got to be Kidney Me

I just got my latest lab results. Everything looks good. Darzalex continues to work like a charm.  Thursday I see Berenson and I'm sure he'll give the go ahead to switch to maintenance, which means only monthly infusions. That will be fantastic and perfect timing for my retirement/embrace life future.  I also take Pomalyst, an oral chemo drug. Not sure how that will work in maintenance. Note that this timing fits with the FDA guidelines for the drug., meaning that insurance won't have issues with it.

What's amazing to me is that as I soon as I started darzalex my kidney function improved dramatically. For at least two years, my creatinine hovered around 3.5 to 4, meaning I hovered around failure range. But for the past few months, my creatinine has been below 3 and with my most recent labs the number is 2.36. Recall that early on in my diagnosis, the number was over 8. I was on a strict renal diet and my kidney doc at the time wanted me to start dialysis.  I even had a stupid fistula (surgically linking a couple of veins in my wrist to create a super vein) to be used during dialysis. I was not symptomatic for having failed kidneys, so opted not to do dialysis. Oh and I fired my kidney doctor, who was so gloom and doom it was depressing. The thought of dialysis scared the absolute shit out of me. It seemed much more daunting than chemo. And if I'm being truthful, the thought of doing dialysis along with chemo had me thinking fuck all of it and I'd pull a Marley and Me maneuver and I'd find a tree to a curl up under.  But my kidneys hung in there and look at them now!  Amazing and quite a relief.

John Oliver recently did an in depth look at the dialysis industry, including a look at Davita, a leader in providing dialysis.  It's a scary ass story and scary ass industry. It makes me quite glad that I never did dialysis.

Friday, May 12, 2017

Ted Talk: The Magic of Not Giving a Fuck

July 28

I've set my retirement date. July 28. I am super excited and ready. I actually feel great. The darzalex is doing it's job. Today I finished my every other week treatment and starting next cycle I'll be doing infusion only once a month. That is awesome. On Kilimanjaro, it became very clear to me that I want to not work and I want to enjoy life and do the things I want to do. Right now, even though I feel good, I have no energy during the week. I go to work, come home and go to bed at 7:30 or 8. This, for me, is not quality of life. Leslie and I don't have kids, so this is totally doable. We can collect retirement and I can start collecting Social Security Disability even though I'm only 55. Multiple myeloma is an automatic qualifier for SSDI.

I have been battling an ear infection for almost two weeks. It was rather painful for a couple of days then went to being clogged and impacting my hearing. Really annoying. I had it drained the other day. That hurt like fuck. Dr Phan tells me that the dex I get with my infusion will help with the inflammation and the clearing of the ear. As I write this, it already feels more open. I also feel some of the steroid rage coming on. Must sit quietly.

My forehead is just about healed following the removal of the squamous cell carcinoma, aka non-offensive skin cancer.

In a separate post I am going to share post one of the best Ted Talks I have seen. It's appropriate to where I am currently at and is titled The Magic of Not Giving a Fuck.

Tuesday, May 2, 2017


There haven't been a lot of number 6s in the history of the Minnesota Vikings. Surprisingly Bubby Brister is one of those. I can't even remember him being on the team. Nonetheless, 6 is an operative number for today, May 2. Today represents 6 years since my multiple myeloma (an incurable blood cancer) diagnosis. There have been more than a handful of challenges, but today, at 6 years, I feel better than I have since my diagnosis. And as Bubby might have said in the huddle, let's keep the momentum moving forward.

Friday, April 21, 2017

Squamous Cell Carcinoma

I'm coming up on 6 years since my diagnosis. May 2 is my cancerversary date. I've been on treatment non-stop since May 3, 2011. That means non-stop steroids since then. Dexamethasone is almost universally hated by myeloma patients. It's a physical and emotional roller coaster. My current dose is fairly low and I've learned to predict the ups and downs, but I'm still impacted. Another drawback of the never ending steroids is my immune system takes a hit and I can get various other issues including secondary cancers.

For me, being fair skinned and on steroids, I'm now getting squamous cell carcinoma, which is a non problematic skin cancer. Last year I had one spot removed from my arm. Yesterday I had a spot on my forehead removed, via the Mohs procedure (defined below). It's annoying. Looks ugly, but it's not too bad. Stitches come out next week.

And if you're keeping count and including my foot surgery the year before my diagnosis (my theory is the foot surgery might have lead to myeloma (that and too much aspartame)), I've now had 10 procedures in 7 years. Beast mode.

Mohs Micrographic Surgery
Using a scalpel or curette (a sharp, ring-shaped instrument), a physician trained in Mohs surgery removes the visible tumor with a very thin layer of tissue around it. While the patient waits, this layer is sectioned, frozen, stained and mapped in detail, then checked under a microscope thoroughly. If cancer is still present in the depths or peripheries of this excised surrounding tissue, the procedure is repeated on the corresponding area of the body still containing tumor cells until the last layer viewed under the microscope is cancer-free. Mohs surgery spares the greatest amount of healthy tissue, reduces the rate of local recurrence, and has the highest overall cure rate — about 94-99 percent — of any treatment for SCC. It is often used on tumors that have recurred, are poorly demarcated, or are in hard-to-treat, critical areas around the eyes, nose, lips, ears, neck, hands and feet. After tumor removal,, the wound may be allowed to heal naturally or may be reconstructed immediately; the cosmetic outcome is usually excellent.

Friday, April 14, 2017

More Kilimanjaro Photos

I've put together a bunch of photos from the trip. Some are my pictures and some I borrowed from the pros on the trip. They're basically in chronological order. Starting in Amsterdam, then traveling to Africa, the climb and then back home.

It was an amazing experience and I miss my fellow climbers tremendously. We raised over $260,000 for myeloma research. That's awesome! And I've been absolutely amazed at the support from folks both with donations and the kind words and prayers. It means a whole lot to me.

This link ought to take you the photos.

Wednesday, March 29, 2017

Powerful Advice From A Dying 24 Year Old


Honestly I don't even know how 2.18 is possible. That's my creatinine number, reflecting kidney health.  Recall at one point it was over 8 and I had a kidney doctor who wanted me to do dialysis. Never did. And now look, my kidneys are functioning like a well tuned machine. The marked improvement began when I started darzalex in November. And my other numbers continue to shine. Yay darlazex!!!!

Monday, March 27, 2017

Free Educational Event about Ninlaro

Ninlaro is a newish oral treatment for myeloma. There's a free educational event on April 22 in Costa Mesa, CA. So if you're in Southern California and wondering about Ninlaro, this might be the thing for you.

Tuesday, March 14, 2017

Kilimanjaro Photos

I've been back home about two weeks. from the Kilimanjaro. It seems like a long time ago. But then again, the memories and the time with an amazing group of people remains fresh.  I haven't had a chance to go through all my photos, but for now here are a few of them. I also want to say that the support and words of encouragement I received before and after the climb have been amazing and mean more to me than I can fully put into words. Thank you!

Our entire team, including porters and guides. The porters and guide made the trip possible.

Our team in front of what are called the Dr Seuss trees.

Me and my fellow patients at the end of the climb. Gary, Terry, April, Nancy and me.

Me on day 2. Still relatively fresh

Friday, March 3, 2017


I'm home. What an adventure. The following is a note I sent to folks via my donation page. It's a summary of the climb.

Dear friends and family,

I and the team are home safe and sound. Thanks to your generosity I raised over $16,000 and the team raised over a quarter of a million dollars. I knew the experience would be life changing and now that I've been home for 2 days I am beginning to be aware of how truly life changing the trip was. I've made friends who I'll be close with forever.

Physically and mentally it was a challenge like no other. I struggled on day 1, feeling like Katz in the book A Walk in the Woods by Bill Bryson. Starting on day 2 and all the way to day 6 I improved and felt better each day and got into a real groove. On summit night we started our ascent at midnight, I got up to about 16,000 feet, but couldn't make it to the summit. Seemed like the right decision for me at the time. In hindsight, I am disappointed in myself for not pushing through the pain and negative thinking. I am also disappointed that I might have let down the team and all of you.

Nonetheless this was an amazing experience and we showed that cancer won't stop us from pursuing adventures and challenges. Today I am right back to chemo, adding to the processing taking place inside my head. But I feel great.

Again,a huge thank to you all. Your kind words and generosity were absolutely motivating and inspiring.


Thursday, February 16, 2017

Kilimanjaro...Follow Along

Today's the day. Getting on a plane and starting the Kilimanjaro journey. Thank you everyone for the support and kind words. There are two ways to follow our progress.

Friday, February 10, 2017

Countdown to Kilimanjaro

I'm 6 days away from leaving. Feb 16 I fly to Amsterdam, spend a day there. The team will rendezvous there and then we all fly together to Tanzania. About 20 hours total of flying. We spend a day in a small city called Moshi and then we start our climb. 6.5 days up. 1.5 days down. I am ready and excited beyond words. This weekend I'll get a couple of final things for the trip and then start packing. We have to keep our duffel bag below 30 pounds. Porters carry our duffel. We carry our back pack. I'm feeling strong and good. Clearly when we did the training climb in Colorado this past summer, I was on the verge of relapse. That climb and the subsequent Mt Baldy climb here in Los Angeles kicked my ass. But my new treatment, darzalex and pomalyst, is working like a charm and I feel as good as I have felt since being diagnosed. So I am pretty darn confident that I got this thing.

As a team we have raised almost a quarter million dollars. I'm approaching $15,000. The support and kind words I have received have left me nearly speechless. I so touched by the amazing support. I'll carry that with me up the mountain. And the team is comprised of a great group of people. All somehow connected to myeloma, including 6 patients (me included of course).

Our cell service will be very limited while climbing, but Cure Magazine, the MMRF and Takeda will have a satellite phone and will post daily blogs and a progress tracker. The links to follow us are

And don't forget, it is not too late to donate. The MMRF is working hard to find a cure for this incurable blood cancer.

Tuesday, February 7, 2017

March 4 Southern California Blood Cancer Conference

This is a tremendously informative event. It's free and well worth your time if you're in the area. I'm a big fan of the LLS and the patient support they provide.

Friday, February 3, 2017

Pleasant Surprise

Yesterday I came home to this nice letter from the mayor of Long Beach. Quite a surprise.

Monday, January 23, 2017

All Systems Go For Kilimanjaro

This past Friday I saw Berenson. It's my monthly visit, but more importantly it was my final visit before Kilimanjaro. He gave a big thumbs up. The darazlex is working like a charm, I feel great and I'm ready. Dr B had no concerns, other than making sure I give his Institute of Myeloma and Bone Cancer Research (IMBCR) a shout out at the summit. Check.  Followed up the successful visit with lunch and beer at Barney's Beanery in West Hollywood. In my younger days I spent a fair amount of time there. Definitely one of my favorite spots. Fish and chips, beer. Check.

Thursday, January 19, 2017

Sunday, January 15, 2017

Gary Rudman Soon to be a Kilimanjaro Conquerer

Gary is one of my Kilimanjaro climbing partners. He's a myeloma patient, diagnosed in 2015. He's a beast and his motto is: Never quit Never stop. Not today. Not ever.

He's a nice story about Gary:

Wednesday, January 11, 2017

Kilimanjaro Route

There are several routes to the peak of Kilimanjaro. We're taking the Lemosho route.  Follow this link to get a rough idea of our climbing itinerary. We taking the 8 day climb.

Tuesday, January 10, 2017

Short Trailer of Our Kilimanjaro Team Doing our Colorado Training

Less than a minute long, but this gives a nice overview of the team and why we're climbing.

And it's not too late to donate. Here's my link....

Wednesday, January 4, 2017

LLS Free Telephone/Web Conference on Emerging Myeloma Therapies

This Friday the LLS is having an hour and half discussion on emerging therapies for myeloma. To register, follow this link:

Included in the discussion will be:

 How myeloma is diagnosed
Current therapies for myeloma patients
The role of clinical trials in the advancement of myeloma treatment
Emerging therapies for myeloma
Managing side effects
Communication with your healthcare team

Saturday, December 31, 2016

Potrait of a Friendship in the Face of Cancer

Sad and beautiful essay from the New Yorker Magazine. Story and photos of a photographer's documentation of his friend's fight with colon cancer.

Making the Shift

Brief update. Saw Berenson and the kidney doctor the other day. Kidney doctor is happy My creatinine is in mid 2s, best it's been. Potassium and phosphorus looks good, meaning I can still have flexibility in my diet. We reduced one of kidney drugs. And in terms of Kilimanjaro, kidney doc gave me a final thumbs up.

Berenson also very happy. Continued improvement on my myeloma numbers. I can switch from doing darzalex every Friday to now every other Friday. That's huge.  I've been massively tired since starting this regimen. We're going to adjust my pomalyst again to try to minimize the tired. I started at 3 mg per day. Cut it to 2 mg per day. Now this cycle, we've reduced it to 1 mg of pomalyst per day. Fingers crossed it helps.  Berenson also gave a big thumbs up to Kilimanjaro. So despite my concerns about being in good enough shape, it's on. Roughly 6 weeks to go.

Have a happy and safe and healthy new year everyone!!!!

Friday, December 16, 2016

Let It Fly

I'm just two months from Kilimanjaro. Now that I've switched treatment, I'm feeling better and more energetic. So I gotta get super serious about training. I've added 25 pounds of kettle balls to my pack and I'm wearing it when I walk Gracie to get used to the weight and feel of the pack.

Thursday, December 15, 2016

Institute for Myeloma and Bone Cancer Research

As you may or may not know, Dr Berenson, in addition to his dedicated practice, has a non-profit research group, the Institute for Myeloma and Bone Cancer Research. They're doing some exciting work. Below is a year end summary of their accomplishments and goals.

Dear Friend:
We wanted to give you an update on the extremely important and successful work that the Institute for Myeloma & Bone Cancer Research (IMBCR) has undertaken during the past six months as we continue our groundbreaking research into finding a cure for multiple myeloma and other bone cancers.
IMBCR remains the only independent non-profit cancer research institute working to find improved treatment, and ultimately a cure, for multiple myeloma, a cancer of blood cells that reside in the bone marrow.  While the focus of the research is multiple myeloma, many therapies discovered in our research laboratory can apply to the treatment of other cancers, particularly cancers that spread to the bone such as prostate, breast and lung cancer.  
Because of our research, we have continued to develop new treatment regimens that have benefitted patients with multiple myeloma and other blood cancers.   To continue our research, we need additional funds and we now ask for your financial support.
IMBCR continues to be involved in very exciting work.  We have identified new treatments for myeloma, identified new ways to follow the disease, and completed research that has led to a better understanding of the biology of myeloma.
First, we have made much progress on our new protein marker called B-cell maturation antigen (BCMA), initially found in the blood (serum) of myeloma patients. With this simple blood test, we can predict a patient's likely response to treatment, time until they might relapse, and their long-term outcome with the disease. It also provides a much more rapid way to determine whether a patient is responding to their treatment than currently available tests, which will allow doctors to make much quicker changes to a patient's treatment. This will both spare a patient from experiencing potential side-effects and shorten the time a patient would stay on an ineffective regimen. It also should offer the possibility that patients can start out with less toxic treatment and only add in medications or change the treatment early enough so that the ineffective less toxic treatment will not sacrifice the patient's outcome. For myeloma patients whose serum does not have the conventional blood markers, we have shown that serum BCMA levels can be used to monitor them rather than the invasive bone marrow exams and PET scans that are required to follow their disease presently.
Second, we have now established that serum BCMA can be used to track and predict outcomes for patients with other related cancers including Waldenstrom's macroglobulinemia and chronic lymphocytic leukemia.  Patients with the latter disease do not currently have any serum marker to chart the course of their disease.
Third, we have also established that serum BCMA levels are extremely low in patients with immune deficiencies and associated with disease-related complications in these patients. This likely represents the first blood test to both diagnose and predict clinical problems in patients with primary immune deficiencies.
Fourth, we have now shown that low levels of BCMA predict poor outcomes for patients with breast cancer and expect that this is likely to be the case in many other types of cancer that we are now testing.
Fifth, a hallmark of myeloma is the associated immune deficiency which often leads to infection and a lack of a patient's ability to fight off the myeloma effectively. Until now, what caused this problem for myeloma patients was poorly understood. We have now discovered that this same protein, BCMA, when present at high levels in the serum as it is in myeloma patients, causes the occurrence of the immune defects that occur in these patients. This groundbreaking research was just published in a top cancer journal, Clinical Cancer Research. We are now working on ways to prevent this from occurring so that myeloma patients can have functional immune systems which will allow them to fend off infections and fight their myeloma more effectively. Our early results with an inhibitor of the enzyme that leads to the shedding of BCMA show that we can prevent it from being released off of the myeloma cells. This is likely to pave the way for a multitude of studies to use this approach to reverse the immune deficiency as well as make BCMA-targeted approaches to treat myeloma more effective. 
Sixth, we have recently identified a new serum protein that is elevated in myeloma patients especially those with poor outcomes and believe that levels of this protein may predict responsiveness to specific anti-myeloma treatments. We are currently doing further testing on this new serum marker in our laboratory.
Seventh, we are also carrying out further work on a drug called Jakafi. It is currently used to treat a bone marrow condition in which patients make too many blood cells. We have shown that this drug increases the effectiveness of a variety of other drugs that are currently used to treat myeloma including Revlimid and steroids.  As a result of our promising preclinical work, clinical trials are starting now with this combination. Moreover, a newer version of Jakafi is in early development and we have shown that this new drug has major activity against myeloma, especially when combined with other anti-myeloma drugs.  These studies have led to clinical trials that are now evaluating the most promising combinations based on IMBCR's results.
Eighth, we have furthered our work on the pathway that we recently uncovered through which Jakafi can help boost the immune response to the patient's myeloma.  Specifically, a kind of white blood cell called a macrophage, which is a 'scavenger' cell, can exist in two forms -- one which increases tumor growth and the other which slows the growth of the myeloma. We have shown that Jakafi markedly reduces the number of macrophages that make the tumor grow, while increasing the types of these cells that eliminate the myeloma.  We have also uncovered the specific pathways in the macrophage that produce this effect.
Ninth, we are also working on specific genetic signatures that identify resistance and sensitivity to a variety of currently used drugs for treating myeloma patients. We have now identified specific ones associated with sensitivity and resistance to a number of anti-myeloma drugs which will help make more effective treatment planning decisions for individual patients.
Tenth, we have been working on a new, exciting approach to treat myeloma that will only eliminate the tumor cells without having any side effects. This is a treatment that will target the genetic material that is only present in the tumor cells allowing tumor specific killing without any side effects.
We are all very excited about the new discoveries that we have made to make the lives of patients with myeloma better. The advancements during this year at IMBCR would not have happened without your generous support.
We count on our many donors and financial supporters to continue with their remarkable efforts in funding our research and we have enclosed both a Pledge Card and a reply envelope for your use.  
If it is more convenient, you can make a secure online credit card donation by visiting our website:  Please click on the "Donate Now" button. 
You can also make a credit card donation by telephoning our main office number: (310) 623-1210.
In advance, we thank you for your donation and, if you have any questions or comments, please do not hesitate to contact either of us at the above telephone number. 
With thanks and best wishes for the New Year,
James R. Berenson, M.D.                                             Geoffrey M. Gee, Esq.
President, Medical and Scientific Director                       Executive Director                 
*The above information is not intended to be used or construed as a substitute for professional medical care and advice provided by a physician. People who take the information and make decisions regarding their health or medical care, which they believe are based on ideas contained in this article, do so at their own risk. The IMBCR is not responsible for any adverse effects or consequences resulting from the use of any of the suggestions or information contained in the article but offers this material as information which IMBCR believes readers have the right to hear and utilize at their own discretion.

Wednesday, December 14, 2016

Tuesday, December 13, 2016

Darzalex aka Daratumumab

Interesting article that's not too technical about Darzalex, my current therapy. I take it with pomalyst and dexamethasone.

Saturday, December 10, 2016

Saturday, December 3, 2016

Moving Mountains for Multiple Myeloma

We're just over two months away from Kilimanjaro. The excitement is building. Can you feel it? The MMRF has started promoting the climb and the climbers. The below link will take you to a page with climber's blogs. You can read my blog here and you can learn more about the folks I'll be spending nearly two weeks with. It's a great group.

Also, you still have time to donate. By goal is $12,000 and I've recently crossed to 10,000 mark.

Here's the link to get to my donation page.

Matt's Kilimanjaro Donation Page

Thursday, December 1, 2016

Bag o Iron

My blood counts are going up with the new regimen, but I'm also low on iron. Last week and this week I've had to get a 30 minute iron infusion. It looks like this:

Sunday, November 20, 2016

Back to Kilimanjaro Training

Just wrapped up my first cycle of darzalex. Lab results were fantastic. Almost unbelievable how much improvement there is after one cycle.  But we'll take it. I can say I am definitely feeling better. Still having the crash today, two days after chemo. But yesterday I felt well enough to go on a short hike. Kilimanjaro is just 3 months away. Short work week coming up. Berenson Wednesday.  Chemo Friday. It'll be in the hospital since Phan's office is closed.  Should be smooth and easy. We've got it down to about five hours. It is the hospital so let's add a couple of hours.

Thursday, November 17, 2016

11.0 and 2.52

Dayum!!!  That creatinine is dropping like crazy. Good news. Thanks Darzalex. And blood counts going up, meaning increased energy. Tomorrow is day 22 of cycle 1. Might try and get a hike in on Saturday, gotta get back to Kilimanjaro training.

Friday, November 11, 2016

Latest labs

The doctors say that darzalex goes to work quickly because it targets the cancer cells. I'm no oncologist but I do know that finally my blood counts are going up and creatinine is dropping. Hemoglobin is 10.8 which means no procrit shot for first time in a couple of months. Creatinine is 2.82, meaning my kidneys are definitely out of failure territory. So I'd say something is going on.

Tuesday, November 8, 2016

hashtag of the day #fuckthisshit

Feeling ok physically after a couple of rounds of darzalex. But I'm in a horrible mood and really not happy with work and all that goes with it. It has absolutely zero value to me (other than a paycheck). My time working could end sooner than anticipated. And that's my update. Day 15 this Friday.

Friday, November 4, 2016

Done and Done

Problem free day with darzalex. Took about 6 hours. Next time it should take 4. The beauty of it all is I'll have insomnia tonight from the dex but that's ok because tomorrow is Saturday and don't have work or anything. I'm gonna stay up all night. Where's the black jack table?


Lowest creatinine since being diagnosed. 2.79. Yay kidneys!