Sunday, September 24, 2023

Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology. 

Thursday, August 3, 2023

LLS Light the Night Fundraiser

 In my opinion, the Leukemia and Lymphoma is far and away the very best organization for blood cancer patients. Some of the many things they do is fund research, provide patient financial and educational support, and connect newly diagnosed patients with patient "veterans" via the First Connection Program. The Light to Night event is one of the organization's biggest fundraisers.  A friend has created a fund raising team for this year's Anaheim event. The team honors two former volunteers, Phil Ow and Tom Swick, who have both passed on. I knew them both and both were tireless volunteers, always positive and always ready and willing to help fellow patients. They are missed. 

Here is a link with more information about Tom and Phil, the event, and the LLS. Please donate to a worthwhile organization. Any and all amounts are appreciated.

Phil and Tom's Team of Patients and Pals's Fundraising Page

Thursday, July 13, 2023

WHO says aspartame might cause cancer — but that most adult consumers don’t need to worry

 I say worry and stay away from diet soda and equal and anything else that uses aspartame. I have a couple of theories of why I got myeloma and the one that I put the most weight on is my addictive-like consumption of aspartame. Pre-myeloma I lived on diet coke and loaded my coffee with 6 of 7 packets of equal. 

I'm glad to see the World Health Organization say aspartame might cause cancer. The FDA won't make this kind of statement because of the unfortunate intersection of public policy and corporate money.  Please read this article and let's all be more thoughtful about our decisions and actions.

WHO says aspartame might cause cancer — but that most adult consumers don’t need to worry

by Nicholas Florko

Aspartame, the popular artificial sweetener in diet sodas and chewing gums, may possibly cause cancer — but the risk appears to be very low for occasional consumers of these products, according to two reports released Thursday evening by the World Health Organization.

The first report, penned by the WHO’s International Agency for Research on Cancer (IARC), found “limited evidence” that aspartame may cause liver cancer. The second, from the Joint FAO/WHO Expert Committee on Food Additives (JECFA), reconfirmed the WHO’s previous recommendations that the sweetener is generally safe up until very large doses.

The seemingly contradictory findings stem from the two groups’ differing remits. The IARC, which found that aspartame was possibly linked to cancer, studies whether a substance has the potential to cause harm. The second group, JECFA, aims to estimate the actual risk that cancer or other potential harms will actually occur.

WHO officials emphasized during a press conference Wednesday that most casual consumers of beverages like Diet Coke and Diet Pepsi do not need to be concerned about their cancer risk from aspartame.

“Somebody who drinks a soda every once in a while … shouldn’t have a concern [about cancer],” said Francesco Branca, director of the Department of Nutrition and Food Safety at the World Health Organization. “We’re not advising companies to withdraw products nor are we advising consumers to stop consuming altogether, we’re just advising for a bit of moderation.”

However, WHO officials cautioned that the report’s findings could raise concerns for children who will more easily reach the daily recommended limit of aspartame, which is based on body weight.

“You’re right in saying that children may be at a higher risk,” said Branca. A 44-pound child would need to drink roughly four cans of Diet Coke per day to reach the maximum limit, according to the WHO’s recommendations.

Branca also recommended that heavy consumers of aspartame cut down on their consumption — though it’s unclear how many people in the U.S. currently come close to the recommended maximum daily dose, which is 40 milligrams of aspartame per 1 kilogram of body weight. For a 200-pound person, that would mean they would need to drink more than 18 Diet Coke cans per day to hit the daily limit.

“There’s only a very obvious recommendation to give … bring down the consumption,” Branca said, regarding frequent consumers of the sweetener.

The reports likely will not prompt immediate action from public health officials or beverage companies because of the low risk to typical consumers, but they’re likely to cause a massive public relations headache nonetheless.

In a letter dated Aug. 12, 2022, a top official at the U.S. Department of Health and Human Services urged the WHO not to conduct the two reviews simultaneously, given the groups’ different methodologies and likely differing conclusions.

“We are extremely concerned that conflicting determinations presented by IARC and JECFA would seriously undermine the confidence of the scientific process for both bodies and could further inflame the current climate of public skepticism about the validity of science and the scientific process,” the official wrote.

IARC’s determination of a possible cancer risk came primarily from its analysis of three large observational studies examining the correlation between liver cancer and consumption of artificially sweetened beverages, like diet colas. However, these large studies do not show causation, and both WHO groups noted they have significant flaws.

“The Working Group concluded that chance, bias, or confounding could not be ruled out with reasonable confidence in this set of studies. Thus, the evidence for cancer in humans was deemed ‘limited’ for [liver cancer],” the IARC group wrote in a summary paper published Thursday evening in the Lancet. The full evaluation from IARC is expected to be published “in the coming months,” according to Mary Schubauer-Berigan, the acting head of the IARC monographs programme at WHO.

WHO officials said Wednesday that they hope the reports will prompt more research into the potential risks of the sweetener.

“This is really more a call to the research community to try to better clarify and understand the carcinogenic hazard that may or may not be posed by aspartame consumption,” said Schubauer-Berigan.

​​The new analyses follow a May report from the WHO, which found that there’s little evidence to suggest artificial sweeteners, including aspartame, help reduce body fat and that they may increase risk for type 2 diabetes and cardiovascular problems.

Tuesday, May 16, 2023

The Mini Mystery

 You may recall the case of my lost Kindle, which I wrote about in 2019. I left a Kindle on a plane and tried to track it down at the Atlanta Airport during a 45 minute layover. The end result was I never found it, but Leslie had a new one waiting for me when I got home. Now it's the case of the Mini ceramic salt and pepper shakers that somehow ended up at a Jacksonville, Florida mail distribution center.

Some context. When I was diagnosed I decided I needed to get rid of stuff. Which I did, but kind of haphazardly, and I now miss some things that I got rid of. I stopped the purge for a while. A few years ago, I decided to readdress my downsizing and getting rid of stuff. I made the process more thoughtful. I'd give things that had meaning to me to specific people, friends and family, who I knew would share and understand the meaningfulness. Books, old license plates, sports memorabilia, whatever. 

I have a friend, Ron, who loves Minis, the car. He's had a couple over the years. He got married, had two kids and his vehicle needs changed. Someday he'd like to have a Mini again. Well, I've been sitting on two ceramic salt and pepper shakers that are representations of Mini Coopers. They were my Step Dads. My Mom and Step Dad lived in England for a year, back in the 1980s. They had an O.G. Mini while there. So I'm guessing my Step Dad had an ongoing love of the car. When he died in 2005, I asked my Mom if I could have his Mini salt and pepper shakers. They're very nice and very cool. I've kept them displayed next to my small Minnesota Vikings big rig. 

I've been looking at the shakers more than usual for the past few months. They're on a shelf adjacent to where I sit with my laptop for privacy while on my virtual calls with my therapist. I recently decided I'd send them to Ron. I know he'd like them. 

Last week I boxed them up and took them to the post office. Ron only lives roughly 20 miles from me. I sent them via priority mail, meaning they'd get to him the next day. Well, I checked tracking the next day and it said delivery was delayed a day. I kept checking every day and the message never changed. They were at a distribution center in Los Angeles and delivery was delayed. Yesterday morning I checked the tracking. It'd been 5 days since I sent them. Tracking had changed. They were in Jacksonville, FL distribution center with no specified delivery date. Ummmm...what?!

Leslie called the local office and after some challenges was able to speak to a live person, who said they'd look into it. We went on with my day which was capped off by a visit to my back doctor to discuss surgery. Surgery will be in July and sounds not fun. As an fyi, in June I'm having two surgeries to remove a massive large kidney stone, known as a Staghorn Calculus. Myeloma and many years of treatment and steroids mean any surgery has to be approached with caution. I have weak bones and bleed easily.

We had just gotten home from the back doctor, I was ok with the news, when my phone rang. It was actually the woman from the post office. Apparently the box I used to ship the shakers had a small bar code on the bottom of the box that redirected it to Jacksonville. This despite the fact I had used a large sharpie to write the delivery address on the box and the postage having a bar code with the delivery address on it. The woman at the post office said we'd have to file a complaint plus somehow find someone who could remove the errant bar code. Sure. Simple. I filed the complaint. Well, after everything, it was the post office that managed to break me. That call was too much for me.

I felt so defeated and so personally hurt by the mishandling of the box. I had been very thoughtful in making the decision to send the shakers to a friend. It's now a day later and I still feel defeated and wondering why nothing goes right. As I was writing this post, I checked tracking and the box has now left Jacksonville. It's in transit and delivery is delayed again. But the tracking doesn't say where it is going. Is it on it's way back to Los Angeles? Did a person and not a machine realize the error? Who knows. I guess when I wake up, I'll see what tracking says. 

My life has changed so dramatically over the past 12 years. I feel like little by little, things are out of my control and little by little I am losing independence. Who do I blame? Is it anyone's faults?  Thinking about it gets me nowhere. I know that.  

The funny thing is, I almost sent the package via Fedex. I was in a Fedex office with Leslie the other day. I was about to ship the box and decided that I'd use the Post Office instead to save a few bucks. What a mistake. And now I lie here with a sore back that I am sick of, stewing over that decision and the misdirected box.

UGH's the next day and the package in LA and scheduled for delivery later today. Stay tuned.

Delivered!!!! 6 days late and after a cross country trip.

Tuesday, May 2, 2023

12 f*%$#&g Years!!!!

 Today is May 2. It is 12 years since I received my Myeloma diagnosis. Crazy, right? In the past, I've done something special to celebrate/acknowledge the occasion. I can honestly say I never thought I'd live with myeloma this long. What am I doing today? Well, I just had a bowl of oatmeal and soon we're driving into LA to see a urologist. I have something called a Staghorn Calculus in my right kidney. It's basically a stone over 2 cm with a hook in it. Too large to pass. It showed up on a CT Scan that was done of my lower back. And with my already damaged kidneys, it needs to come out. My nephrologist thinks it needs to be surgically removed and  he sent us to this urologist. What is interesting to note, is we've been babying my kidneys for 12 years now and have avoided dialysis. I've told myself that if I had to do dialysis, well, that's where I draw the line...if you get my drift. So I want that thing out! I've put myself back on a kidney friendly diet, to give them some relief. For the past few years, basically since starting Darzalex in 2016, my kidneys have been humming along and I've eaten anything I wanted to. And although Darzalex is still keeping my myeloma in check, my creatinine has inched up ever so slightly. My non-educated medical opinion is the staghorn is the cause. Who knows. But can't hurt to be safe. 

Meanwhile I've got a horrendous back. There is no disk between the L5 and S1. We've tried everything to minimize pain, but it's looking like surgery is the only remaining option. I've got two different back doctor follow up appointments coming up, to identify the path forward. Remember a couple of years ago when I was walking about 45 miles a week? Now, walking to my car causes pain. Life comes at you fast.

And what else? That's about it. It's a very uneventful 12 year cancerversary. But key is that I'm still alive and kicking and still waiting on the Vikings Super Bowl victory. This year?

Wednesday, March 15, 2023

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. 

Wednesday, March 1, 2023

A Cure Magazine Article: Early Aging and Cancer

 Exactly 100% how I feel!

Published on: 
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.





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, January 28, 2023


 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:

Monday, January 23, 2023

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:

Thank you and please share with your greater networks! 


Jeff Wiesen

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

Saturday, January 14, 2023

Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.