Monday, April 14, 2014

Cure Talk on Marijuana and Cancer April 15

Tuesday April 15 there is a Cure Talk discussion on marijuana and cancer.  The guest is Dr. Donald Abrams, a cancer and integrative medicine specialist at the UCSF Osher Center for Integrative Medicine at Mount Zion. The link to listen is http://curepanel.carefeed.net/event/rsvp/22/. Pat Killingsworth, a myeloma advocate, is on the panel.

Also of note, Gary Peterson, also a myeloma advocate and survivor, did a blog post on the subject of myeloma and marijuana. Pretty interesting reading.  http://www.myelomasurvival.com/myeloma-blog.html

Friday, April 11, 2014

Gray Areas

I got my monthly lab results today. I've completed 2 cycles of Treanda the Sequel.  A cycle is Tuesday, Friday, Tuesday, Friday, followed by two weeks off. In chemo terms, I'm doing chemo on days 1, 4, 8 and 11.  That's a lot. I'm wrapping up week one off of chemo. Next week is the second week off and then I start up again April 22. April 22 will be day 1 of cycle 3. Got it? 

Anyhow, my lab results after two cycles are super. We saw a nice big drop in my myeloma numbers. The Treanda still works. And that was the goal when we took me off of maintenance. We/I wanted to go back to what worked and use it till it lost it's effectiveness. My goal is save the new drugs for later. It was a bit of a risk but not a huge risk. It seems to be working out. I'll see Berenson Monday. He can review the numbers. My guess is that we'll do one more cycle of treanda and then go back to maintenance.

That's myeloma.

It hit me this week that when I first did treanda, I was critical. I was hardly working and feeling like crap. This time, I've been working full time and even though I had a minor relapse, I was feeling good. But honestly, this heavy duty chemo kicks my ass. Physically tired. My legs have felt like massive weights. My emotions and mental state have been iffy at best. I've hated just about everything and everyone for the past 2 or 3 weeks. I think yesterday I finally snapped out of this toxic doldrums. Feeling good. Mentally more stable.  And now I have one more week of good feeling. Yeehaw!!

This is just my experience of course....but cancer/myeloma is a funny thing, I want no sympathy, no pity and I don't even bring up my cancer in the course of normal activities. The other day I had the most horrible meeting at one of the port's container terminals. The terminal managers are huge. I mean absolutely obese. They are aggressive, abrasive and use their weight to intimidate people. In my whole working life, I've never experienced anything like this. The other day, a particularly hot day, they were on the attack. Me and my coworkers were absolutely blasted by these guys. In my mind, I was telling them to go fuck themselves.  But in reality I kept calm and tried my best to reason with them. We all tried, to no avail.  Mind you this was a day that my mental state was not at its best. This was a day that my body ached all over.  We were outside and it was hot.  I wanted to tell these guys to shut the fuck up, that I'm dealing with the after effects of chemo and was in no mood for their crap.  I didn't. I want no special attention, But once in a while I'd like some acknowledgement of the crap I'm dealing with.

Like my fellow myeloma patients, I bust my ass to keep everything together and moving forward. I bust my ass to be positive, to be professional, to keep my life as normal as possible. What choice do we have?  And while I want no attention, there are times, I'd like someone to say, Damn Matt, you are kicking ass.  It's a fine line between what I want to hear and what I don't want hear.  Perhaps its superficial lip service that I don't want. Sincerity is what I want.

Lately, I've really been missing the old Matt. The Matt that traveled almost every month..visiting friends when they weren't visiting me. I miss the old Matt that had energy to go have a beer and watch the final four with friends.  The old Matt who was carefree and worry free.  He's gone. But I think I need to work on recapturing some of that spirit. Yes, I am kicking myeloma's ass. Yes, I'm keeping things together. Yes, I am a better person now than I was 3 years ago. But I wish there was a way to merge the two Matts. I'd like to merge the fun, easy going Matt with the new Matt who is focused and honest and compassionate.  I love that feature in Excel....the merge cells features. It gives you such a better cell. You can center, make into a title or header or eliminate wrapped text.  Pretty nice feature.

I'll be alright. But the gray areas between what I want and what I need and what I miss and what I don't miss are huge. A lot of gray right about now. I'll work through it though.

Tuesday, April 8, 2014

interview with Kathy Giusti of the MMRF

From CNN, an interview with Kathy Giusti, CEO of the MMRF and myeloma survivor.

http://edition.cnn.com/video/data/2.0/video/business/2014/04/08/qmb-the-mmrf-cancer-research-charity-giusti.cnn.html

Don Baylor Update

As you know, Don Baylor is a myeloma survivor. He is also a baseball MVP, Manager of the Year and now batting coach for the Angels. He suffered a nasty broken femur last week.  Well, you can't keep Don Baylor down.  He's a tough son of a gun.  He plans to return to the team by the end of May.  Here's the story:
http://www.latimes.com/sports/sportsnow/la-sp-sn-angels-don-baylor-return-20140407,0,2698509.story#axzz2yLYhR3uy

Saturday, April 5, 2014

Another Viewpoint on Myeloma Induced Changes

A fellow myeloma patient, Jim Arnold, wrote the following to explain how he'll never be the same person after his diagnosis.
http://findingthepony.blogspot.com/2014/04/ch-ch-ch-changes.html

Wednesday, April 2, 2014

35

Today is 35 months since my diagnosis. We're rounding the bases to 3 years. Plan for the day on May 2? Dairy Queen.


35 is also Phil Niekro. Knuckleballer. Hall of Famer. Played until his was almost 50. His career represents longevity through guile and trickery.  When I was in high school, cable tv was a new thing. Superstation WTBS, out of Atlanta, was one of the first cable stations. So we watched a lot of Atlanta Braves baseball. I had a Braves hat. Bob Horner, Dale Murphy and Phil Niekro were my favorite Braves.

And Something from Brad Coustan

Here's an update from Brad, who's doing tremendously following his recent stem cell transplant. Inspiration Plus.  Brad's post also mentions an injury suffered by Don Baylor on baseball's opening day. Don is a baseball great, 10 year myeloma survivor, one time MVP, manager of the year and now is the batting coach for the Angels.  Scary injury.  Best wishes and positive thoughts to a speedy recovery.

http://bradstrong.me/2014/04/01/41-but-you-dont-look-like-you-have-cancer/

A Recent Post from Pat Killingsworth

We should all know Pat by now. He's an active myeloma advocate and author. He's also a Wisconsin Badger fan, who are in the Final Four. That's college basketball's championship for you non-Madness folks.

http://multiplemyelomablog.com/2014/03/exciting-victory-helps-me-focus-on-whats-important.html

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: http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman

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: http://www.curepanel.carefeed.net/event/rsvp/20/

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.

http://multiplemyelomablog.com/2014/03/relapse-review-what-should-pat-do-next.html

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:
http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman

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: http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman

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

Another Month Passes

Time for 24 hour urine collection. Cooler: you're with me today. 

Monday, March 10, 2014

Shockers

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. 

http://www.firstgiving.com/fundraiser/mattgoldman/teamgoldman


To learn more about the institute, follow the link... http://www.imbcr.org/

And here is a link to the Bolder Boulder 10k, known as America's best 10k..... http://www.bolderboulder.com/

Friday, March 7, 2014

Team IMBCR

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.

http://video.ktla.com/Official-ASICS-LA-Marathon-Charity--More-Information-About-Myeloma--Bone-Cancer-25684628?playlistId=12093

Thursday, March 6, 2014

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.

http://www.curepanel.carefeed.net/event/rsvp/23/


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.

http://www.myelomacrowd.org/from-surviving-transplant-to-the-boston-marathon-one-myeloma-survivors-incredible-story/




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.


http://www.myelomasurvival.com/1/post/2014/02/when-myeloma-awareness-month-falls-every-march-does-anyone-hear-us.html

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.
Picture
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: https://twitter.com/grpetersen1

34

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.

Friday, February 28, 2014

What do I call this?

I never had a complete response. Only partial. So my maintenace was to myeloma on check, we always knew it was there. Now that I'm back to my previous regimen, does this mean I have relapsed?  Hmm, good question. I'm not sure what we call this.

Day 4

Back in the office for infusion where it all started nearly 34 months ago. 

Thursday, February 27, 2014

when the going gets tough....

I'm back on my treanda treatment.  There's going to be some adjustments.  Take a look....

Wednesday, February 26, 2014

Day 1 Done

Ok, I've had Day 1 of Cycle 1a of the new old regimin.  It's basically what I've been doing for maintenance; dex, velcade, revlimid; except different days and different volumes. And with Treanda (bendustamine), an aklylating agent, added in.  Good luck finding this under the list of typical treatment.  But it's worked before and is going to work again.


Tuesday, February 25, 2014

And we're off...

Treanda, baked cheetos, House of Cards 

A New Season Starts Today

I made a video last night, but I really didn't like it. I didn't want to edit myself, but in this case I am.  Anyhow, today a new season starts.  Back to treanda, back to heavy duty chemo.

I've had it pretty easy for the past year and a half.  Basically it's been my off season.  I've felt great, my body wasn't getting beat up.

My numbers have been inching up. Nothing critical. In fact, some numbers, like creatinin, are still looking good.  We met with Phan yesterday and he would have been perfectly ok with me continuing on maintenance.  He's also perfectly ok with me switching back to my old chemo.  There's no right or wrong here.  We do it, we test, we see if it works. Well, it'll work. 

But I want to stay ahead of the game.  I don't want to see my kidneys getting worse and then we make a decision. I don't want to become symptomatic and then we do something.  I want to be aggressive.  That's going to be my style this new season. Attack, attack, attack.  Myeloma won't know what to do. Myeloma will be on its heels.  It's go time. It's a new season. Where is the opening game fanfare? Bands, prime time tv. All that.

A short message to myeloma

Saturday, February 22, 2014

Three Powerful Myeloma Voices

If you'd like to hear from three amazing myeloma patients who are powerful voices in the myeloma community, here is your chance. Please give each a listen.

Jack Aiello
http://www.patientpower.info/video/how-to-be-your-own-best-advocate

Pat Killingsworth
http://www.patientpower.info/video/the-importance-of-myeloma-research-a-patient-advocate-s-perspective

Cynthia Chmielewski
http://www.patientpower.info/video/a-patient-advocates-perspective-on-developing-myeloma-research

What to do, what to do?

I saw Berenson yesterday.  I told him he bumped me from Inside Edition. He didn't seem too interested. He's a great doctor, but not the best at small talk. Anyhow, it was my monthly visit. For my myeloma, which is of the light chain variety, we track the protein in my 24 hour urine and then test for paraprotein and get a % of total protein that is the bad paraprotein. Several months ago we had those numbers way down. The total protein and % were looking great. But for the past few months, they have been moving up.  Neither Berenson nor Phan seemed worried.

We were worried a few months ago when I was sick and getting fevers. But it turned out I had a bad flu and it wasn't the myeloma.  Right now I still feel real good. No symptoms.  But those numbers had me thinking. This month was another jump in my numbers. Something in my gut told me it was the myeloma regaining momentum. And if so, in my mind I figured we ought to jump on it. Nip it in the bud.

At Berenson, normally I wait for him to suggest something or say we keep doing what we're doing. But I jumped the gun yesterday and told him I thought perhaps we need to change things up. At the LLS blood conference last week, a doctor mentioned that there are times you can go back to previous successful treatments if you relapse. Save the new big gun drugs for later.  When I was diagnosed neither velcade, doxil nor thalidomide worked. So we tried Treanda (bendamustine), not a standard myeloma treatment in the U.S. It worked like a charm. So at Berenson, we discussed going back to it, to beat the myeloma back down. He agreed that would be the way to go. He recommended it, after I suggested it, if that makes sense. I don't think he would recommend something unless he thought it was the way to go. Right?

I've been fortunate with maintenance.  One short infusion every two weeks. Few side effects and I am leading a normal life. For nearly two years, this has been my routine and not a big deal.  Last night, I realized that going back to Treanda means some changes. Do I get my port put back in? I'll have chemo twice a week, two weeks in a row. Then I get a two week break. I'll have to miss a bit more work.  I'll actually be tired after chemo, which means I can't drive myself home from treatment and I'll need a nap when I get home.  I've been making plans for the next few months, I need to now redo my calendar.

A bunch of inconveniences come with going back on Treanda. So now I am wondering if we jumped the gun on making the switch off of maintenance. I read Pat Killingsworth's blog on the Myeloma Beacon, how he took a watchful waiting approach recently and how perhaps he should of attacked earlier. Pat has bone involvement. I have kidney issues. My bones have been good. I have avoided dialysis this whole time. Dialysis scares the living shit out of me. Much scarier than chemo for me.  And talk about a life changer. That is dialysis.  So I think my decision to go back to heavy duty treatment partly had my kidneys in mind. I'm eating regular foods and my creatinin number has been good for months. I want to keep things that way.

We'll see Phan on Monday and talk this all out. I was planning on starting the new old treatment Tuesday. Maybe it clearly is time to change. Maybe we can wait. That is something that I've told people and they've told me. There is no clear cut way to go with myeloma. It's a weird cancer. But you choose a path and don't look back. You go all in. You have to. You have to believe it's going to work. I do believe. But it's the timing that has me a pondering.

Wednesday, February 19, 2014

And Now a Word from My Mom

Well, here's what's been happening. I'm on an off week from treatment. Next week, I start a new cycle of maintenance.  This Friday is my monthly Berenson visit, plus we're throwing in a kidney doctor visit. First kidney doctor visit in months. This past weekend, I did my monthly 24 hour urine collection and comprehensive myeloma blood work. Also this past weekend, my mom was in town, visiting me and Leslie.

As you know, I've been getting into making videos for my blog updates. So since my mom was here, I asked her (pestered her) to make a video update to give a mother's perspective on this thing we call myeloma.  My mom lives in northern California. I'm in southern California. I am the youngest of three kids. I'm 52, but still the baby.  My initial diagnosis of myeloma was pretty shocking to all. Scary, stressful, and all that. The first several months I wasn't in good shape and we were all grasping to find a treatment that works.

As time has gone by, I've gotten better and gotten in to a routine. I'm at 34 months and I think Leslie and I have a handle on what we need to do. We live it every day.  My mom did move down to Long Beach when I was diagnosed to be available to help. She got an apartment nearby.  But a couple of years ago, as I transitioned to maintenance, she moved back up to northern California. So really for the last year and a half, she hasn't seen me every day and only knows how I am doing either through this blog or when we talk or when she visits.  I'm not the best sharer though. Yes on this blog I'm open about my thoughts and my treatment. But when it comes to talking to my mom or other family members, I am a bit more tight lipped. Why, I don't know.

So when my mom did her video the other day, listening to her, it hit me that this is still fresh and painful and difficult.  She's my mom. I can only imagine how tough it is to see one of your own children be hit with a serious disease.   I was overcome with guilt and sadness and pride and love for my mom. Cancer/myeloma is tough. We all deal with things differently. I drew some sharp lines for what worked for me. My nature is when the going gets tough, I hunker down, silently and in many ways independently. 

But my mom is quite a person. Strong and honest and caring. I'm lucky to have her. I've watched her video a couple of times and each time I'm blown away by her emotion and honesty and her heartfelt talk. She took making the video seriously. Like I said, I deal with this every day. I can try and have fun with it. Yes I get down,  but I try to stay happy and positive.  And as I said, my mom doesn't see it every day. She might not be at the point I am at.

I asked her if it would be ok to post her video. She said yes. I've debated it for a couple of days.But I think it portrays a good strong loving person, who is grappling with myeloma. Give it a look. I'm pretty sure you'll all agree with me.

Tuesday, February 18, 2014

March 7 Cure Talk on Fund Raising for Myeloma

Hello folks, are you curious about how you can donate and contribute to the myeloma cause?  The hows and whats will be discussed on March 7.  The panel will be me plus Brad Coustan a myeloma thriver who created the Bradstrong golf tournament, Kendra Goffredo a triathlete who's father has myeloma, and Wilma Comenat, who works for the LLS in Washington and puts on events such as the Big Climb which I did last year.  Give it a listen if you can. Here is the link:

http://www.blogtalkradio.com/curepanel/2014/03/07/fund-raising-for-myeloma

Friday, February 14, 2014

Listen to Ann McNeill Discuss Myeloma Labs

Yesterday's Cure Talk was terrific. Super informative. Oncology nurse Ann McNeill was awesome. You can listen to her talk here:  http://www.curepanel.carefeed.net/event/rsvp/18/

And here is a link to her slides that accompanied the talk:  https://docs.google.com/file/d/1b5gRhOGAnn0oskYtYtqNDhs9EemS5cg_mtIJU04EJZiQVNEM7EtB2Hmo-cTX/edit


Thursday, February 13, 2014

Understanding Myeloma Labs

There is a Cure Talk panel discussion today on understanding myeloma labs.  The link is: http://www.blogtalkradio.com/curepanel/2014/02/13/understanding-myeloma-lab-tests-and-results-with-oncology-nurse-anne-mcneill

My Almost 15 Minutes

First let's get business out of the way.  Today is Thursday, February 13.  Mid February already! We all say it, but time sure does fly by.  I have chemo today. Day 15 of cycle 22 of maintenance chemo.  Infusion of velcade and dex. Then at home I take revlimid and medrol.  This weekend is my 24 hour urine collection.  Next week is Berenson and the kidney doctor.  I did basic blood work earlier in the week and for the first time I didn't call for my results. I'll get them when I go to Phan's today for my infusion. 

We've been taking a cancer survivorship class. There are reading assignments and homework assignments every week.  There are perhaps a half dozen other participants in the class. I'm the only myeloma patient.  Really it's a group session of cognitive therapy, a term I didn't know until recently. It helps us balance the unknown and worry that comes with cancer. We do a lot of belief work, which means we're working to eliminate unhealthy thoughts and beliefs as they pertain to our cancer. I'm really enjoying the class and it is helping me cope.

This weekend, the L.A. Chapter of the LLS is having a one day blood cancer conference.  My mom is coming down for a visit and the three of us will be going to the conference to learn a few things.

Now on to other stuff.  As most of you likely know, Tom Brokaw announced he has multiple myeloma. Apparently he was diagnosed last August, but his announcement came a few months later. As with anyone who has been diagnosed with myeloma or any form of cancer, it's a shame and we all send best wishes and positive thoughts to Mr. Brokaw.  But this is also an opportunity to raise awareness about multiple myeloma, a not so common cancer.

Yesterday when I went to work, I had an email from someone at the tv show Inside Edition.  They found me from this blog and from I believe fellow patient Gary Peterson (who tracks survival rates at http://www.myelomasurvival.com).  The show was doing a segment on Tom Brokaw and wanted to add something from a patient's perspective. I called up the individual and made arrangement to go to their office to tape my segment. I left work, went home to change my shirt and pick up Leslie. I made it to their facility at 10 AM.  We met a few folks and were taken to a room with a couple of chairs, a camera and a staged library behind the chair I'd be sitting in. I answered questions for about 15 minutes. I discussed myeloma, what it is and they asked what Tom Brokaw might be facing. I think I did pretty well.  They also filmed me outside walking and leaning, pensively against a railing.

I rushed back to work, and told folks to set their dvrs for that day's Inside Edition.  Leslie meanwhile called my family to let them know. As always, I got a ton of encouragement for my fellow myeloma survivors. Seemed like a great opportunity to inform folks about this incurable cancer.  At 3:30 yesterday, a few of us went to someone's office who had a tv.  The show opened with several minutes on a 911 call related to road rage and then several minutes of how to properly rake snow off your roof. WTF????  Then it was the Tom Brokaw story. This lasted maybe 45 seconds. It had a quick video of Dr Berenson. And then it was over. No Matt. No me.  What happened? I was on the cutting room floor. Talk about bursting my bubble.

The night before at our cancer class we discussed the benefits of getting sick. I mentioned that getting cancer had gotten me over my horrible fear of public speaking. Even speaking in small intimate group settings made me super anxious and sweaty. But no more. I'll now talk anywhere, any time. Before cancer I never would have sat in front of a camera and answered questions.

So this opportunity at Inside Edition served two purposes. Mostly it was to raise myeloma awareness. This is key. But it was also a bit of an ego boost. Life it pretty routine. Wake up, go to work, come home, fight cancer. So this opportunity definitely mixed things up. Well, I was close. I almost had my 15 minutes of fame.

Tuesday, February 11, 2014

Social Media and Cancer

I've mentioned before how through twitter and social media, I've developed a great support network and met some amazing people.  Here's a nice article about this very topic.  Quoted in the article is Cindy Chmielewski, who is one of those people I've met through twitter. 

http://socialmediatoday.com/joan-justice/2157456/how-chronic-cancer-patients-use-social-media-stay-informed