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On 3/24/2025 at 9:58 AM, MissingInAction said:

I think it's gonna be ok. It's just a fat sack of fluid. Doesn't penetrate the bone or muscle tissue. I can move it around. Chicks like to touch it.

Yea I got some sympathy loving this weekend.

That sounds more like a schlongoma.

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Posted (edited)
On 3/19/2025 at 7:41 PM, Bevo said:

 

Yeah, but why would anyone get an LLM - It's a downgrade. 

I love surly threadjacks, but there's a reason an LLM is an LLM.  The law degree in England and Wales is an undergraduate degree, often an LL.B., bachelor of laws.  Further study led to the LL.M. Although the law degree in the US has mostly always been a graduate degree, at first and for many years it was the LL.B.  The J.D. is a relatively modern development.

Hang in there all of you.  Got thoughts and prayers and similar shit behind you.

Edited by TwiceHorn
Posted (edited)

I know I told everybody that I had spots on my liver that they were sure were cancer, and MDA figured out they weren‘t literally two days before I was going in for surgery to cut a hunk of my liver out.

For two years after that, every MRI or CT showed spots on my liver. Every time the radiologist said it was indicative of metastasized colon cancer - possibly.   And then after a while, whatever the hell they were bid us adieu for good (hopefully).   

Which is all to say, there are good spots and bad spots.  But of greater importance my friend, every spot is not a bad spot. 

IMG_4354.jpeg.ec60d75cb4cd46c464e9c0ea31f84bc1.jpeg

Edited by Gatorubet
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Posted
38 minutes ago, Wally Fairway said:

For those of you who have been on this journey, you are all to well aware of how this impacts your life. Last week was the first post op PET scan (and an MRI for extra shits & giggles). And guess what....there is a spot on both, right about where the surgery was; and because that area is where radiation and surgery were there isn't a for sure answer as to what the spot really is. Tissue still irritated from prior treatments, something that was missed, or something new. 
The surgeon looked and looked and didn't see any visible signs of abnormal cells, though there are still a few areas where she could see cartilage and bone. Those areas had mucosal membrane removed during surgery, and we were told they take time to heal, and that the areas around them were healing. Waiting for an MRI next month, and 3 months for the PET (unless they see something earlier). 
I think this is the new norm, learning to live with the unknown, living in remission while fearing a relapse. So, in general, we do more things for us, and try to remain positive (I am a huge believer in the power of a positive attitude). And for all these reasons we will spend a little more time in the Houston heat this summer. 

Go Green & Hook'em

We go to Houston tomorrow for my wife’s 2nd post treatment scan. I am right there with you and the feelings. 

I also believe in staying positive and the power that gives you, keep it up. 

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Posted (edited)
3 hours ago, Dbeasy said:

Wait, I thought you were black. 

Worse. I'm a ginger.

We all die. I thought my end would come at the hand of a hail of bullets.

Shit I'm still posting so fuck you death.

Not today.

Edited by MissingInAction
Posted

Yeah, there's a spot on my lungs that they can't figure out, it's been there from my first CT and hasn't grown or reacted to chemo. I got sent around to different specialist and their best guess is it's a dormant viral infection that I've suppressed for maybe decades. Unfortunately the body is not an exact science. 

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Posted

Yeah, as useful as PET scans can be, they are far from perfect. Radiologists all seem to have different styles, too.

“Here’s some areas of moderate SUV. They are probably benign, but who knows, you could still have lots of cancer!”

Oh, gee, thanks!

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Posted

I was at my pulmonologist doc many years back -- Dr. Pohl, UT swimmer -- and after my routine x-ray he came into the exam room and asked "do you feel OK?".

"Yeah, why?"

"Well, look at this x-ray.  You have a spot on one lung.  It COULD be cancer but maybe not".

Commence terror.  Turns out I happened to be in the earliest stage of pneumonia, which while not fun, ain't lung cancer.  Spots suck but they can be all kinds of things.

Posted
10 minutes ago, MissingInAction said:

The scan reports it's localized to the tumor, and I need to lay off the cheese.

I am unsure how cheese is relates to the tumor.

But in any case, I see they didn't say anything about cheez, so you're still good....

Cheez-Whiz-Original-Cheese-Snack-8-oz-Sp

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Posted
16 hours ago, Wally Fairway said:

For those of you who have been on this journey, you are all to well aware of how this impacts your life. Last week was the first post op PET scan (and an MRI for extra shits & giggles). And guess what....there is a spot on both, right about where the surgery was; and because that area is where radiation and surgery were there isn't a for sure answer as to what the spot really is. Tissue still irritated from prior treatments, something that was missed, or something new. 
The surgeon looked and looked and didn't see any visible signs of abnormal cells, though there are still a few areas where she could see cartilage and bone. Those areas had mucosal membrane removed during surgery, and we were told they take time to heal, and that the areas around them were healing. Waiting for an MRI next month, and 3 months for the PET (unless they see something earlier). 
I think this is the new norm, learning to live with the unknown, living in remission while fearing a relapse. So, in general, we do more things for us, and try to remain positive (I am a huge believer in the power of a positive attitude). And for all these reasons we will spend a little more time in the Houston heat this summer. 

Go Green & Hook'em

Yeah, it's normal for the PET to show "abnormalities."  They are just looking for active cells.  Sometimes it's just inflammation.  But the PET is much more definitive than the normal CT.  Any follow up tests planned?

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Posted
10 minutes ago, Sbbruin said:

Yeah, it's normal for the PET to show "abnormalities."  They are just looking for active cells.  Sometimes it's just inflammation.  But the PET is much more definitive than the normal CT.  Any follow up tests planned?

Her protocol is immunotherapy every 4 weeks through August, monthly PET scans through August 2026 then those spread out to every 4 months, then semi-annual and by 2031 it will become annual PET scans. 

She was very nervous, since this was her first PET since being diagnosed with cancer when she didn't know the test would be positive. So we are in limbo since they aren't saying it was negative, but it also isn't being called positive. If it doesn't change after the June PET then the discussion will be about next steps, but until then it is just monitoring (visually) the surgery site.

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Posted
3 minutes ago, MissingInAction said:

I see my PCP tomorrow then oncologist the following day.

Hope it all goes well - my wife now has (besides her PCP, and couple of prior MDs, surgeons, urologists, etc) a oncology surgeon, oncologist, radiologist, endocrinologist, cardiologist, plastic surgeon, and some other people like social worker, dietician, physical therapist, respiratory therapist (lots of therapists) and me to help through this maze. 

Posted

There was a point during chemo where I actually gained about 20lbs in a month after losing 30 over the previous few months and the onc was like "uh, so it's great you're keeping weight but we, uh, don't want to put additional stress on the body either"

I appreciated the tact. 

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Posted

All I know is that I will be cancer-stable for 9 more days. Then I have another CT scan, and maybe it does all kinds of fun new stunts. But until that exact time, I ain't worried. 

After they determined that all the calls were coming from inside the house, ie it was my medicine causing goofy numbers and agitation, I have gotten lots better in a few weeks. Watery bloat all gone, weakness is just a memory. Went from hiding in bed to going on multi-day international sales trips, if Georgia counts as a different country.

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Posted
2 hours ago, MissingInAction said:

I was instructed to eat nothing but protein. 

No beer makes Homer something something 

VI-eena sausage marinated in purified water. Vodka would probably count as purified water.

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Posted (edited)

A close relative of mine died from cancer many years ago. Besides what is mentioned in the article, Joel also set the AIDS/HIV treatment protocols for the country. So in homage to him:

 

‘The miracle was you got to see some part of that person’s life’

25 years after his death, infectious disease expert Dr. Joel Meyers honored at inaugural symposium in his name
June 7, 2016 By Rachel Tompa / Fred Hutch News Service
Dr. Joel Meyers Dr. Joel Meyers started the first program in the world dedicated to studying and treating the unique infections that plague bone marrow transplant patients. Fred Hutch file

Barbara Thrasher remembers the exact moment she and Dr. Joel Meyers first reached Seattle on their cross-country move.

The couple had driven at high speed from Philadelphia with everything they owned, which in 1975 included a lot of hanging houseplants, Thrasher said. They reached the bridge to the city and it was like a whole new world opening up.

“We came over the 520 bridge into Seattle on this sparkling June day and looked at the sailboats and Mount Rainier and the houseboats and we thought, ‘Do people actually get to live like this?’ We’d never seen anything like that in the East,” she said.

Meyers’ arrival in Seattle was the start of a new world professionally, too. He was starting research that few others were doing at that time, studying infections in people with weakened immune systems, also known as the immunocompromised. And he would soon start a program unlike any other in the world — an infectious disease program headquartered at the brand new Fred Hutchinson Cancer Research Center to study and treat the unique infections that plague transplant patients.

“There was essentially no field” at the time, said virologist Dr. Larry Corey, Fred Hutch president and director emeritus and Meyers’ longtime collaborator and friend. “There was no field of bone marrow transplantation, let alone infectious diseases in bone marrow transplantation.”

What was once a one-person research program has now grown into the world’s largest group of infectious disease researchers at any cancer center. Today, these researchers study not only infections in cancer patients, but HIV, malaria, viruses that themselves cause cancer, and many more. 

But Meyers neither saw many of these advances nor the full impact of his own research.

In 1991, at the age of 46, Meyers died of colon cancer. A study he led on preventing a deadly viral infection in transplant patients — one of the most important findings of his career — was in press at The New England Journal of Medicine at the time. It would be published a few weeks after his death.

Next week, infectious disease researchers from around the world — all of whom now specialize in the field to which Meyers and his colleagues gave a name soon after that sparkling June day in 1975 — will gather in Seattle to share findings, catch up with collaborators and reminisce about their mentor, colleague and friend. The Hutch’s inaugural Symposium on Infectious Disease in the Immunocompromised Host, the first research gathering of its kind in the world, takes place next Monday as a tribute to Meyers.

CDC days

Thrasher and Meyers first met in Atlanta in the early 1970s — she’d moved there for a teaching job and didn’t know anybody. One of her college friends introduced her to another friend who worked at the Centers for Disease Control and Prevention, and that friend asked Thrasher if he could set her up on a date with one of his co-workers.

“And I said, ‘Oh my gosh, yes you can.’ And he got me a date with Joel,” she said. It was a blind date, “and when I opened the door I just had this overwhelming feeling that this is the person,” Thrasher said.

Meyers was working at the time as what is known as an Epidemic Intelligence Service officer, or EIS officer, one of the CDC’s “disease detectives.” It was during the Vietnam War; Meyers was in the middle of his medical training and was recruited to serve a two-year stint at the CDC in lieu of active military service.

He hadn’t yet selected a medical specialty and became enthralled with the little-known field of infectious disease research, Thrasher said.

“When you told people you were in infectious disease, they almost chuckled; they’d never heard of it,” she recalled. “They’d say, ‘Is that like colds or what?’”

During his time at CDC, Meyers was introduced to the late Dr. E. Donnall Thomas, the leader of Seattle’s newly formed bone marrow transplantation group that would later become the foundation of Fred Hutch. There was a mysterious outbreak of what turned out to be hepatitis C among Thomas’ transplant patients, and Meyers was dispatched to Seattle to investigate.

“Joel’s work on this outbreak … really illustrated the importance that the discipline of infectious disease had for the marrow transplant patient,” said Corey, who was also an EIS officer at the time. Corey met Meyers through his job and he and his wife, Amy, had become fast friends with Meyers and Thrasher.

Thomas was impressed with Meyers during that brief visit, and Meyers “fell in love with Seattle and the team there,” Thrasher said.

Thomas and his colleagues “were just starting to recognize that they were having a lot of deaths from cytomegalovirus,” or CMV, a type of herpesvirus, said Corey, although it wasn’t yet clear whether the virus was the killer or just along for the ride. “There was this recognition that they needed someone who had the infectious disease and epidemiological skills to do this.”

After Meyers finished his stint at the CDC and his residency, Thomas recruited him to join his growing transplant team as the group’s first infectious disease expert. Meyers and Thrasher were married a year after they moved to Seattle, in 1976.

CMV days

That period — the mid-to-late 1970s — was at the same time exciting but devastating for those involved in transplantation. Thomas and his colleagues were snatching very ill patients from the brink of death, but those they saved from cancer were the exception to the rule. Most patients died, and many of them died of CMV infection.

“I remember going on rounds and seeing a patient who was otherwise looking fine, listening to their lungs and hearing a few crackles in their lung. It would be CMV,” said Fred Hutch transplant researcher Dr. Fred Appelbaum, who joined the transplant team in 1978, in a previous interview. “And that patient was almost certainly going to die. They went from healthy to dead in a matter of weeks.”

Meyers’ first task was to understand whether CMV was truly responsible for those deaths. Through pivotal research, he showed that CMV was actually the pathogen that killed 40 percent of patients after bone marrow transplantation in those days, Corey said. “It was the major deterrent in advancing the field of bone marrow transplantation. We actually needed to do something about it; it wasn’t just a casual bystander.”

Meyers and Corey then helped test the antiviral drug acyclovir, showing that the treatment was incredibly powerful in treating infections with the related pathogen herpes simplex virus, which Corey studied. It worked to a certain extent against CMV too, and the transplant team started using it to treat their patients.

“It was an amazingly effective drug that totally transformed both our lives and patients’ lives,” Corey said. “The first studies we did were like, ‘Oh my god, something is happening here.’”

Meyers also took the (at the time) heretical step of testing whether treating transplant patients in advance with antibiotics or antivirals would reduce serious disease and death. This was incredibly controversial in the infectious disease field, Corey said. Such potentially harsh drugs were only used for treatment, not prevention — but Meyers showed through clinical trials that treating bone marrow transplant patients before they were severely ill saved lives from these deadly infections.

He later ran clinical trials testing whether the antiviral drug ganciclovir, a close relative of acyclovir, could prevent even more deaths from CMV in transplant patients. It did — that was the paper that would be published shortly after he died.

“Not only did he define that CMV was a pathogen, he did the first studies to show that he could treat that pathogen and almost make it go away,” Corey said. “Being able to discover it and then treat it, in such a short period of time — it was cool that he got to see that, he got to know that, before his premature death.”

Future days

Concurrently with his work on CMV, Meyers was also laying the groundwork for a growing research field and program on infections in the immunocompromised patient. Although the Fred Hutch team’s work initially focused on infections in bone marrow transplant patients, their studies would have implications for many others with weakened immune systems — including organ transplant recipients and those living with HIV/AIDS.

Meyers was always thinking about the next generation of researchers, Thrasher said. He loved traveling to meetings to share findings and talk research, and often looked for ways to bring trainees along with him to help them network and further their careers.

“His door was always open to young scientists,” she said. “He said they’re the most important people there because they’re the next line.”

Dr. Michael Boeckh, who now heads Fred Hutch’s Infectious Disease Sciences Program, was one of those young scientists. He came to Seattle as a fellow in 1990 to train with Meyers because the Hutch scientist was the world expert in CMV infection in transplant patients, Boeckh said.

“Joel was an iconic leader and inspiring mentor and role model,” he said. “He always looked out for his fellows in their careers.”

It was in that vein that Thrasher, with Corey’s help, established the Joel Meyers Endowment Scholarship shortly after her husband’s death. The endowment, which Thrasher has continued to support with her second husband, Rick Koffey, funds infectious disease researchers early in their careers. Eighteen “Joel Meyers scholars” have since launched their careers with the fund’s help, and many of them will return to Seattle next week for the symposium, along with others in the now-established field of infectious disease in the immunocompromised.

“[Meyers] would be just thrilled to see that this continues and that he’s had an effect, that his life had that effect,” Thrasher said. “You always wonder after someone dies, what did all that mean? To me this is an enormous meaning, to continue in his name.”

The last days

When Meyers was diagnosed with cancer, “everyone had this feeling of disbelief—how can this happen to a doctor?” Thrasher said. But the detachment Meyers was (mostly) able to maintain with his own patients slipped away with his own illness.

“It’s very hard when it’s you,” Thrasher said. “You try to intellectualize it and deal with it by attacking it from the academic side, but for him, it was difficult to do that, to depersonalize it and look at it and make these decisions.”

It was Meyers’ first trainee, Dr. James Wade, who stepped up to help Meyers and Thrasher make those tough decisions. As a “last ditch effort,” Thrasher said, Meyers went through a transplant himself, at the time being tested at the Hutch as a treatment for solid tumors. The transplant didn’t work against his cancer, and the approach was ultimately abandoned.

As painful as Meyers’ premature death was for Thrasher and everyone else who loved him, she wouldn’t trade the time she had with him for anything, she said.

“Even inside of losing a husband — and I can’t describe what that’s like to anyone — I still feel like I’m probably one of the luckiest people around. I feel incredibly lucky to have known Joel, even though it was all too brief,” Thrasher said.

She and Meyers were married for 15 years before he died.

“When someone has cancer, when you have that in your life, you hope for a miracle,” she said. “You hope for the miracle that there’s a cure, or the miracle that you’ll wake up some morning and it will turn out to be a bad dream. But I realized after Joel died that the miracle was that you got to be with that person. That you got to see some part of that person’s life.”

 

Rachel Tompa is a former staff writer at Fred Hutchinson Cancer Center. She has a Ph.D. in molecular biology from the University of California, San Francisco and a certificate in science writing from the University of California, Santa Cruz. Follow her on Twitter @Rachel_Tompa.

 

Edited by Bevo
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Posted

There are many many different chemotherapy drugs.  Each one of the individual drugs has different side effects. As always, people react differently to the same medication.

And then there is the fact that individual dosages will vary as well, as the dosage can change symptoms.  I did my chemotherapy mostly by pill, so for several weeks I would take them twice a day.  I felt generally tired and had horrific diarrhea on the pills..   Every three weeks I would get the ox infusion which would lead to cold sensitivity in my hands that was so great I had to put on gloves to get things out of the refrigerator. The first time I felt it I was at the freezer section of the store and when I grabbed whatever I grabbed, it was so blindingly  painful that I dropped it on the floor.

  And my jaw would cramp up every time I started to eat.   Then it would go away after you were eating a while, but if you stopped eating (like - to listen to a conversation), the next time you took a bite your jaw would cramp up again.

And sometimes your throat would feel like it was closing and you were choking, but that was a false sensation    Because your throat and airway passages were not actually closing and you could simply ignore it  until it went away

 

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Posted

Oof!

Certainly not the consult news you were hoping for MIA.   I think a second opinion is always a good idea. But I do not think a second opinion from some local oncology surgeon should trump advice from MDA.

Maybe Sloan-Kettering consult or some such?   

it is hard to comment because you had to have asked him or her what the chances were if you did or didn’t, and the percentages and so forth.   If you mentally tuned out the second he mentioned amputation - then maybe you should write down some questions and get some of those details worked out before you see a second doc.

 

Posted

Well that’s not what I was hoping to read. 

When is your appointment in Houston? I think you already got it setup, hopefully they get you in quick to get a 2nd opinion. 

 

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Posted (edited)

Not till May but they may move it up with encouragement.

My friend who is a hedge fund manager was with me. She wrote everything down while i went blank with shock. She has an eye for detail and gets paid a lot for it, so it was comforting having her with me.

Salvaging the arm would mean a fuckton of chemo and radiation.

I'll see what MDA says.

Edited by MissingInAction
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Posted

Really glad you had someone with you to help do that. 

I hate that you are going through this, it is going to be rough until you have a plan in place. Try to stay positive. Remember to breathe. Let out that rage if you need to. 

You got this MIA, one step at a time. 

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Posted
15 minutes ago, MissingInAction said:

Not till May but they may move it up with encouragement.

My friend who is a hedge fund manager was with me. She wrote everything down while i went blank with shock. She has an eye for detail and gets paid a lot for it, so it was comforting having her with me.

Salvaging the arm would mean a fuckton of chemo and radiation.

I'll see what MDA says.

So....thought it was encapsulated, and they could likely remove it....then sure, zap you with a buncha prophylactic chemo etc.?  But then, I ain't a doc.

Posted (edited)
15 minutes ago, Brisketexan said:

So....thought it was encapsulated, and they could likely remove it....then sure, zap you with a buncha prophylactic chemo etc.?  But then, I ain't a doc.

It's the way it wraps around nerves. Or some shit. It's mm away from the artery.

Bought a pistol to put some rounds down range. It's very therapeutic.

Edited by MissingInAction
Posted

MIA -- I think you've already decided to head to MDA but here is my story -- I had a growth just above my collar bone on my right side in 05.  I was told cancer is a spectrum and, while I didn't have risk of it spreading throughout my body, it was locally aggressive and 'cancer like' and they were concerned about it spreading to my spine and brachial plexus. My doctors in Austin wanted to go in and do very invasive surgery and remove the tumor and a bunch of healthy tissue around it.  They told me the nerve damage would likely result it in my not being able to move my limbs on my right side.  I went to MDA and they said that was bullshit.  One of the top head and neck surgeons in the world (a longhorn) handled my surgery and I had no detrimental effects on my movement. After surgery one of the top radoncs in the world created a radiation plan for me.  I did radiation (daily I think) for 6 weeks (at MDA) and then went back monthly, then 3 times a year, then 2 twice a year for the next 4 or 5 years.  I have been fine since getting the call clear in 2011 or so.   

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