Some Updates

 It's no secret I'm a Minnesota Vikings fan. My fandom started in the late 60s. From 1969 to 1975, the Vikings were in 4 Super Bowls. Zero victories, nonetheless, those were great teams. Their head coach for those years and into the early 80s was Bud Grant. A childhood friend, Chris, texted me the other day to say that Bud Grant had died. As I told Chris, those teams and those years certainly played a role in forming who I am to this day. A little known fact is that one of my favorite presidents is U.S. Grant. Why you ask? Because as a kid, I connected one Grant (Bud) with the other Grant (US), and a top president was chosen. Also note that my all-time favorite senator and near president is the late Hubert Humphrey. He was a US senator from Minnesota and came close to winning the presidency in 1968. As a kid, my Vikings fandom translated to me loving anything from Minnesota. Hence Humphrey. One last side note, another favorite president is Harry Truman. The reason for that is a song called Harry Truman by the band Chicago, which was one of my favorite bands growing up (and to this day). 

Rest in Peace Coach Grant

Another recent passing is Dick Fosbury. He revolutionized the high jump by creating the Fosbury Flop in 1967/68. Before Fosbury, high jumpers used a scissor method of crossing the bar. People thought he was nuts, but his success led to the flop now being the only method used by high jumpers. I love track and field and wished I had been either a high jumper or 800 meter runner. Note here that I have a screenplay called Buy the Vikings. I'm now working on When the Chips are Down. And when that screenplay is done, my plan is to write The Flop, about Dick Fosbury and the Fosbury Flop.

Rest in Peace Dick Fosbury.

In myeloma news, my numbers remain stable. The only change is one that I am pondering. I've had Dr Phan since I was diagnosed. He's been great; attentive and caring. My system currently is Berenson comes up with my protocol and even when things are stable, I see him every two or three months. For me, he's in valuable. But I've relied on Phan when I need to discuss myeloma or my overall health. He's basically functioned as my primary care doctor. I do my treatment at his clinic and I have a relationship with his staff. But...his practice has grown. Getting personal care and attention is no more. His turnover of nurses is a bit frustrating as a patient. I'll cut to the chase and say that I'm thinking of switching to a different doctor or facility for my local care and myeloma treatment. It pains me to say it, but it is something I am seriously thinking. I'm keeping Berenson and my other team of doctors. I've thought about doing my monthly treatment at Berenson's. But it's about 30 miles away and with traffic can take up to two hours to get home from there. The thought of sitting in traffic for 2 hours after treatment sounds terrible. I've got a couple of nearby places that we'll probably go see (interview) in the near future. We'll see. Note that I also have to go to Phan's for my monthly blood draw from my port and whether another facility will do that, would be part of the interview process. Oh and also, will another facility/doctor be ok implementing a treatment regimen that a different doctor (Berenson) comes up with? Lots to ponder.

And lastly, my back basically sucks. I'm not even walking given I don't want the additional pain that arises after 15 or 20 minutes. What to do about my back is also something I'm pondering. I gotta get in to see my back doctor, who happens to be married to my dermatologist and they make up the loveliest power couple I know.  

And that is all I got. Stay healthy and safe. 

A Cure Magazine Article: Early Aging and Cancer

 Exactly 100% how I feel!

Early Aging and Cancer

Published on: February 28, 2023

Martha Carlson

Research backs up my personal experience regarding aging and cancer.

One of the hallmarks of my life with ongoing cancer treatment, following confirmation of metastatic breast cancer in January 2015, is the exponential list of health issues and their associated doctors.

I’ve got my primary care physician, my breast oncologist, my blood-thinner oncologist, my neurologist, my cardiologist, my urogynocologist and other specialists who I haven’t yet assigned permanently to my stable of experts.

Eight years ago, all I had was a primary care physician (PCP) who specialized in caring for my kids.

A few weeks ago, at my annual check-up, my PCP quickly entered referrals for additional specialist care. As she entered the reasons for each referral, telling me which specific doctors to ask for, I said, “I never thought I’d have so many problems or so many doctors.”

She stopped her typing and turned to me, saying “That is how it is once you have cancer” and looked at me sympathetically. She knows me well enough to know how much I dislike going to appointments, how much I would rather resolve or, better yet, prevent problems using techniques under my control.

Time.

Diet.

Rest.

Exercise.

Less stress.

Even now, my instinct is to turn to those five healthy-living standbys. Can I give myself more time to feel better? Have I been eating junk or am I dehydrated? Can I take it easy so I can heal? Have I been walking enough? Can I shed some of the stress in my life?

And yet I, like so many cancer patients I know, have a cascade of health issues that require more and more care, making the future look like an endless string of appointments, tests, worsening health, even when cancer is stable or in remission.

Cancer itself is an aging-related disease, but research has also found that treatments themselves can cause premature aging, which means other age-related diseases or complications can occur earlier. Knowing how and when premature aging occurs might mean we can use or develop better tools to reduce it. Just like icing heads, hands and feet can result in less hair loss and neuropathy, knowing if aging is happening faster could help guide decision-making and identify risk early.

My gut tells me that my body isn’t aging properly. I can see faster aging on the outside, with my skin and muscle tone. I question the toll of cancer treatment even as I feel gratitude for staying alive.

I’ve been intrigued by “Washington Post” and “Bloomberg Business Week” articles about anti-aging research highlighting what wealthy people are doing to try stay young.

I’d like to think that this research will be more urgently applied to people likely to die far too soon, who live with serious consequences of life-extending treatments or who have been harmed by environmental disasters. It is why I think being upfront about the long-term effects that many cancer patients experience from treatments is critical. Knowing what and why our bodies behave the way they do can lead to better care.

After all, a good life requires more than just not dying.

Saturday

 Yesterday was DarzalexFaspro. I'll say it again, it's a life changer. I was finding it nearly impossible to sit for 5 plus hours for the normal Darzalex infusion. Now I'm in and out in less than hour. Oh, Berenson had me drop Pomalyst. I had my first appointment with him in months this past week. My face has been recovering from a 5 day chemo peel. I get way too many squamous cell carcinomas. Skin cancer. Dr B saw my face and said we're dropping Pomalyst immediately. He said it causes skin cancer and he didn't want mine to progress to melanoma and eventually kill me. Sold. Bye bye Pomalyst. Fine with me, I was only taking 1 mg per day for 21 days. I will say that my body is so sensitive to all medicines nowadays, it doesn't take much to throw me off kilter. With Faspro I get a 3mg infusion of Dex. Not much. But it messes with my energy and emotional state massively. Fuck that stuff. Yes, today I have roid rage. Tomorrow I'll be tired and hate everything about myself. Fun, right. 

The good news is, my myeloma is stable. Kidneys are functioning. In May, it'll be 12 years since I was diagnosed. Really fucking miraculous. 12 years of flying by the seat of my pants and making good choices with my medical stuff The other stuff...meh. 

The bad news is the Vikings crapped out in round 1 of the playoffs. I was so in love with this team and had high hopes. But they exceeded all expectations and the future looks bright.

What else? That's it, I guess. Here's a couple of things to share:

Cure Magazine: Finding Our Purpose After Cancer  

My Face: 

A song I've been hearing a lot, still love it:

For your listening pleasure

 Dr John: Right Place, Wrong Time

Darzalex FasPro Opportunity

I'm sharing an email and link I received:

Hello Matt - 

My name is Jeff Wiesen and I’m a casting associate with Nonfiction Unlimited, a production company that specializes in documentary-style projects, mostly with non actors.  

We are casting DARZALEX FASPRO® patients and their care partners for some exciting patient testimonial projects.

We are looking for diverse patients who have taken DARZALEX FASPRO® for at least a year, and/or their care partners. This is an opportunity to share their stories with others who are eager to learn more about their experience on treatment.

If selected, stories will be videotaped and shared with patients, care partners, and providers to help raise awareness, inspire confidence, and connect the broader community.

In order to submit for consideration, please fill out the form at the following link:

https://darzalexfaspropatienttestimonialvideocasting.castingcrane.com/

Thank you and please share with your greater networks! 

Sincerely,

Jeff Wiesen

© Janssen Biotech, Inc. 2022. | Proprietary & Confidential. Do not distribute. 12/22 cp-345006v1

Two Pertinent Articles from Cure Magazine

 Worth reading:

Regaining Control

Wasting Cancer?

And by the way, Cure is a wonderful publication and you can subscribe for free. Follow this link: Cure Magazine

Happy New Year and oh by the way, Vikings are 12-3

 Hello friends. It's me, Matt. It's been a minute since I've posted. But I did want to say Happy New Year and good riddance to 2022. 2022 has been a challenging year for my family. But we survived and powered through it. For me personally, health-wise, I'm good. Myeloma remains stable. 6 years on Darzalex and Pomalyst. We've lowered my dex quite a bit and that's helped a lot with my mental state and my skin seems a bit better. Of course, I've gotten good at protecting my arms. Bruising and bleeding on everything got to be no fun. My back has been a pain in the butt, I've definitely had to modify how I exercise. Long walks are out and that's probably a permanent change. Coming up in January, I'm seeing a pain specialist to hopefully get a shot in my lower back to at least give me some relief. But! It's way better than it had been. I baby it and it hangs in there.

recent visit from a Red Shouldered Hawk in our back yard

Yesterday was my monthly Darzalex infusion. I've switched to FasPro and it's been a game changer. 1 hour in the infusion chair versus the  previous time of 5 or 6 hours. I just couldn't sit there for that long any more. 

My immune system remains balky. I got another dose of Evusheld in October to give me some protection against covid. We'll get to Berenson in January and test my antibodies. We still remain safe and careful. But, getting into the myeloma weeds here, my IGG this month was way too low this month. This means my overall immune system is low and I need to be careful with any virus or infection. I wanted to get an  IVIG infusion yesterday with my Darzalex but Phan has a theory that IVIG (an infusion of immunoglobins) might counteract the Darazalex. In talking to him he went into the half life of IVIG and so on and so on. But I've gotten IVIG in the past and I'm going to tell him I want it. My disease is stable and now is a good time to get. As he said, it's my choice and he wouldn't fight it, if I wanted it. 

I finally found a therapist who is doing the trick for me. It took a while, but it's helping me with frustration, anger, depression and control. Overall though, I'm happy and honestly shocked that I'm still alive and doing as well as I am. It seems impossible, but obs, it's not impossible. In May of 2023, it'll be 12 years since the diagnosis. 

thank goodness Leslie can fix most anything

And now let's talk about the Vikings. At the start of the season, I assumed it was a rebuilding year. But they keep winning in miraculous fashion. Almost every game is remarkable. 2 games remain in the regular season and then we get to the playoffs. Is it Destiny? Is it fate? I'm trying to temper my excitement. We've been through this before, many times. But this has to be one of my favorite Vikings teams ever. Justin Jefferson is an amazing receiver. I've come around 180 degrees on Kirk Cousins. Leading into this year, I wasn't happy with him as the Vikings quarterback. But now he seems like the perfect leader for this team. The entire culture and mindset of the team has changed thanks to their new head coach, who's 37 years, a young age for a head coach. But it was needed for this team. Skol Vikings!!!

Decades and counting. is this the year?

New years will be low ley for Leslie and me. I'll be worn out over the holiday weekend, given my Friday treatment. But that's cool. 

And don't forget to support the Leukemia and Lymphoma Society. They provide multiple levels of support for all blood cancer patients. 

Lost Redux

First myeloma news. No news. And no news is good news.  

The latest binge: Lost. I watched when it was first on and now I'm rewatching and it's even better the second time around and more meaningful. Our search for meaning.  Previous binges: Las Vegas, Gunsmoke and Breaking Bad. The scene below is when Mr Eko says: "Don't mistake coincidence for fate."

On another note and just as important, the Vikings are 8-1 and had a miraculous victory last week.

A New Treatment Option for Myeloma Patients

 U.S. FDA Approves TECVAYLI™ (teclistamab-cqyv), the First Bispecific T-cell Engager Antibody for the Treatment of Patients with Relapsed or Refractory Multiple Myeloma

Medicare Advantage? Medicare Disadvantage would be a better name.

 It's insurance enrollment time. I came across the below article in the Charlotte Observer. My recommendation is to think about what your needs are and talk to your doctors to see what they do and don't accept.  Give this a read. 

Medicare Advantage? Medicare Disadvantage would be a better name.

Vikings this season: 5-1!!!

 This blog is first and forecast about my myeloma journey. A very close second, it's about my love of the Minnesota Vikings. I'm born and raised in Southern California, but my fandom has been around forever. My step mom recently sent me some old photos. Once a Vikings fan, always a Vikings fan. Oh and by the way, my myeloma is stable. All good.