MGUS

If that title is confusing, don't worry -- I'll explain. I want to talk a little bit more about what happened at my last appointment with my oncologist.

I wrote about my appointment a few minutes after I got home, so I was still kind of processing it all. Let me go back about 8 months or so.

During my annual physical in the fall (with my general practitioner, not my oncologist), most of my blood work was fine. But my protein level was a little bit high. That number is really general -- there are lots of potential proteins in the blood. The Gen Prac ordered another blood test to see if it was some kind of one-time thing. 

The second blood test showed the same thing. The general test didn't say much, but the Gen Prac said it was somethng we should keep testing for to keep an eye on. At this point, I was getting close to my January oncologist appointment. I mentioned it to him (the Gen Prac and the Oncologist are not on the same Electronic Records system, so he didn't see the blood test results easily). The Onc looked through the test results and ordered some additional tests on the blood test I had done for him earlier that day.  The results came back the same.

So the oncologist ordered some additional, more sensitive tests to see what exactly was happening with the excess protein in my blood.  

At this point, he kind of repeated what the Gen Prac said -- excess protein like this can be a sign of several conditions, including blood cancers. It sounded very general and non-committal to me, given how detailed our discussions usually are. But I also was not in any mood to ask what it all meant, so I let it go.

But he did give it a name -- MGUS, meaning Monoclonal Gammopathy of Unknown Significance. (And if you are a fan of the move The Princess Bride, and that immediately reminded you of ROUS -- Rodents of Unusual Size -- then you and I have something in common.) 

MGUS, as he explained, occurs in about 5% of people over 50. There is about a 20% chance of it turning into something else within 20 years. He told me not to worry about it. We will be actively monitoring for it.

Fast forward to last week. I did a blood test for my Gen Prac a few weeks ago, and the protein level was fairly stable -- a tiny increase. She wrote a message in my Electronic Records about my cholesterol looking good. No mention of the proteins. I took that as a good sign.

The Oncologist did the same general protein level test, and then the more sensitive one. Another increase.

This time he was less non-committal. "So I'm now treating you for two blood disorders -- Follicular Lymphoma and MGUS. It's possible that the MGUS could turn into Multiple Myeloma. We will continue to monitor it and treat it if it becomes necessary."

This wasn't a shock. I've known about this for 6 months. It's not like Lympho Bob isn't going to hear something like that and not start doing research.

But it was still a little bit of a punch to the gut. I put it out of my mind, mostly, but a few days later, my wife and I were on a long car trip to see our son, and it kept creeping into my head.

It brought up a lot of old feelings, things I haven't really felt much in 18 years. The fear never really goes away. It's always just under the surface, bubbling up a little bit when it gets triggered. But this wasn't bubbling up. This was a small gush. It subsided eventually, and when my wife and I had another 4 hour drive on the way home, we talked about it. She had the same feelings return when the Oncologist started to talk about it. 

It helps to try to step back and look at things rationally. And that's not always easy, I know very well. But I did a little more research. The protein levels are indeed high. A normal range is something like 3 to 8 (I'm not even going to look up what the actual range is). Six months ago, mine was something like 8.7. This time it was something like 8.9. Patients with Multiple Myeloma can have levels in the hundreds or even thousands. I'm not there yet.

The more sensitive test of the protein showed that it was the type that leads to the least aggressive problems, if any problems do occur. So that's good news. 

Another potential problem is damage to the kidneys, which have to work harder to eliminate all of that excess protein. The Oncologist had me do a urine test. I got the results back last week. His nurse left a voice mail message saying the Onclogist thought "everything looked good."

So I'm relaxing a little bit now. No immediate danger.  

But it's amazing how much the body remembers, how that same feeling in my stomach returns, how a bit of electricity and heat rises from chest, up my shoulders, into my ears. That fear. It knows its path. It knows how to return. It's ready.

As I have said many times before, I think sharing our stories is one of the most important things we can do. It helps us. It puts the fear into words. That's an important step in dealing with things. Words can be dealt with. Feelings stay where they are and fester. 

But telling our stories helps each other, too. I don't know how many times I've been on both sides -- the teller and the listener -- and realizing that two people sharing the same experience make us both feel a little less alone. Our stories help others realize that there is someone else out there who has felt as we felt. That helps.

And I hope this has helped. It's OK to feel that fear every now and then. And it's more than OK to put it into words and share it. 

Stay well, and keep sharing. 

 

NCCN Guidelines

It's been a while -- I don't like to go more than a week without posting. I've been busy, traveling to see some family and hosting other family members. Exhausting but fun. I wouldn't have it any other way.

But it means I'm behind on reading about Follicular Lymphoma. So I'll do my best with this one (and also mention that I'll be hosting and traveling for another week or more, so expect another delay).

As I look through all of the links that I have been collecting, the one that stands out is a video from The American Journal of Managed Care's website. It's from a series of interviews with Dr. Ryan Haumschild, Dr. Christina Poh, and Dr. Tara Graff. In the series of videos, he provides some insight into newer approvals for Follicular Lymphoma treatment. If you've been reading the blog for a while, you know I like this kind of thing, which is fairly common on oncology websites. It gives an expert a chance to tell us where we are -- a nice overview of what is happening.

The series includes nine videos, but it is video number 7 that intrigues me: "NCCN Guidelines in Focus: Key Updates for Follicular Lymphoma and Their Impact on Formulary Decisions."

The NCCN is the National Comprehensive Cancer Network, a group of 34 cancer centers that work together to produce a series of guidelines for doctors to help them make treatment decisions for many different cancers. The guides are based on current research about the best order to use different treatments. I'd link to the FL guide, but you need to sign in to read them. I can occasionally get to a copy, so I've seen what they look like.

The NCCN Guide for FL are interesting because they provide so many options. There are probably cancers that have guidelines that say "If a patient is diagnosed with stage 3 of this cancer, then treat them with X." Pretty straightforward. Of course, FL isn't like that. There are a bunch of options at every stage. In some ways, that's good -- we have lots of options. In other ways, it would be really nice to have a straight path with one option because that one option works so well.

What intrigues me about NCCN guidelines is how they are used. As I have mentioned before, in my 18 years with FL, I have seen five different oncologists. Three were Lymphoma specialists, doing research on FL and other Lymphomas. The other two were generalists, treating blood cancer patients, but also patients with breast, colon, and other cancers. Those generalists are the ones that seem to rely most heavily on the guidelines, which makes sense. After I stopped seeing one of those generalists, I found a copy of the NCCN guidelines and kind of traced our conversations through the guide. For example, he really wanted me to have a PET scan, even though there was no indication that my disease was progressing. But the NCCN guidelines said that someone in my position can have one every year, so it was OK. Now "can" is not the same as "should." I didn't get the scan, but I did get some insight into how he made his decisions. I also got a new oncologist soon after that. 

So the discussion of the updates to the NCCN guidelines was especially interesting to me. It's a short video -- the main update was that Tafasitimab + R-Squared is now in the guidelines. This combination was approved just over a year ago by the FDA, though honestly, I haven't heard much about it since then. Most of the buzz since then has been about Epcoritamab, the bispecific that was recently approved by the EU in combination with R-Squared. (Dr. Haumschild expects this combination to be approved and added to the guidelines soon.)

I liked his insight into why all of this is important. As more treatments are added to the guidelines, they are likely to be used more. And as they are used, more "real word" data is collected on how effective and safe they are outside of clinical trials. And as more data is collected, we get a better sense of which treatments are appropriate for which patients. The NCCN guidelines are based on just that kind of data.

But data doesn't tell the whole story. Oncologists are human, and have their habits and their opinions, and "the best" isn't necessarily the treatment that the data would suggest.

I guess for me, the lesson for all of this is, first, be sure you are comfortable with your oncologist. Ask questions. Have discussions. In many ways, we are lucky to have a slow-growing cancer, and one of those ways is that we often have time to have those conversations before treatment is needed. The other lesson is, seek second opinions when you can. The guidelines offer lots of options, and it's nice to have a second set of eyes look through the records and make a suggestion. 

Things will slow down for me soon, I'm sure. I'll get back to reading more of this FL stuff then. 

 Take care.

 

Oncologist Appointment

I had a six month appointment with my oncologist today. Things look good (with some complications).

*******

As usual, I have had mixed feelings about my appointment. I feel fine, but it's still never fun to go t the cancer center.

For all of my appointments, I have a blood draw about 30 minutes before I meet with my oncologist. At the end of one appointment, I schedule the next one, and the blood draw, too. For some reason, I didn't do that last time. I booked my oncologist appointment, but not my blood draw. I'm not sure what I was thinking. I have a blood draw clinic near me that is run by the cancer center's network, so maybe I was thinking that I could save time by doing it a day before? I don't know -- that was six months ago. 

So when I got the reminder email a week ago, and the offer to pre-check-in on my Electronic Records portal, I saw that my blood draw wasn't scheduled. So I spend a week trying to figure out how to book the blood draw at the cancer center. It all worked out, but it seems like there is always something to add extra stress to the appointment. 

For this appointment, I asked my wife if she wanted to come with me. It's actually the first time in many years that she's come to an appointment. I almost always did appointments on Tuesdays, which was convenient for my work schedule, but not convenient for my wife's schedule. The after a while, she thought it might be bad luck to come, since my appointments had been going so well. It had been so long, she hadn't ever even met Dr. H, who has been my oncologist for a while. But she agreed to come with me.

It was nice to have her with me. I don't feel like I need the direct emotional support that I used to need, but it's still nice to have someone by your side. Plus, she sees and hears things that I don't because I'm so focused. And I don't mean things like the doctor's instructions. I mean things like overhearing someone else walking down the hall saying "I hate this place" ("You and me both, lady," was my wife's comment). Or noticing that the July 4th/World Cup decorations in the blood draw office looked like it was set up so people could take fun selfies with it, and then offering to take my picture, which she did:

 

For some reason, no one else at the cancer center blood draw office seemed interested in taking a fun holiday-themed photo. Go figure.

Anyway, my blood looked mostly good (more on that in a minute), and the physical exam was fine. No problems with the Follicular Lymphoma. 

But then there are the other problems.

For my last visit, Dr. H asked for some additional analysis for my blood because my total protein was too high. The analysis broke down the various proteins in the blood to see which one was causing problems. It turned out to be IgG, signalling a condition called MGUS -- Monoclonal Gammopathy of Unknown Significance. It's a benign condition that usually stays benign, though it can have some health consequences, the  most serious being the possibility of it leading to Multiple Myeloma, another blood cancer. For now, he says that there is maybe a 20% chance of that happening in the next 20 years. But the good news is, we are aware of it, and we can test it every 6 months to stay on top of it, so if it does turn into something else, we should be able to catch it early and deal with it. It was actually my General Practitioner who first noticed it, so my regular blood tests with her are also being analyzed for the same issue on top of the lipids, blood sugar, and everything else that she tests for. 

I don't particularly want to have to deal with Multiple Myeloma, if only because I would feel compelled to write about it. And then what am I supposed to do, start a new blog? "Myelo Bob"? I don't like it. Doesn't roll off the tongue the way "Lympho Bob" does. So I'm just not going to deal with it.

Dr. H says that it's unlikely that the MGUS is related to the FL, so if you're worried that this is something you or a loved one needs to pay attention to, you probably don't need to worry. I'm just special.

I hope all of you are getting good news at your own oncologist appointments, and that you are staying well. Take care of yourselves.

 

Donate to the Pan Mass Challenge

Hello everyone. I'm going to do something I very rarely do -- ask you for money.

It's not for me. It's for all of us, really. 

My brother is once again riding in the Pan-Mass Challenge -- a bike ride across Massachusetts to raise money for cancer research at the Dana Farber Cancer Institute in Boston.  

He's been doing this ride for 18 years, and he has raised over $88,000. Occasionally, he says "This year will be my last." It's a lot of work to train and ride on the day. Last year, he couldn't ride because he was injured, and it seemed like he was done. But here he is again. He just can't help himself. He knows how important this is. 

This is the email he sent out this year:

 

I hope you had a great July 4th Holiday weekend!  We're only 4 weeks out to this year's Pan Mass Challenge , and I'll be riding again for my 18th year.  

The PMC raises more money for charity than any other single event in the country, $1.125 billion since 1980 and $78 million in 2025 alone! This success is the result of a lot of people riding for, and caring about, a cure. And because every penny matters, 100 percent of your donation goes to Dana-Farber Cancer Institute. I've made a personal commitment to ride PMC 2026 and raise $4,000.00. I hope you can help me achieve this significant goal. To give online, you can use the following link to go to my personal fundraising site: http://www.pmc.org/profile/MM0386 Every donation brings us closer by the mile. Many thanks, Mike

PMC donations are tax deductible and 100% will go to Dana-Farber Cancer Institute. The PMC's tax ID / EIN is 04-2746912. The Pan-Mass Challenge only uses your personal information to thank you and will not share it with any other organizations.

 

I know not everyone is able to donate, and that's OK. But if you're inclined, please consider clicking the link and giving a little something. It doesn't need to be a lot. And it helps us all.

Thanks for considering the request.

 

Electronic Records, Data Sharing, and Identity

I have an oncologist appointment next week. I have one every six months, and I like it that way. My oncologist says I  an see him once a year, but I feel better seeing him more often, even if I'm feeling fine and I'm not having any problems. I'll be sure to give you all a report next week after the appointment.

As usual, I received an email a few days ago, asking me to go to my Electronic Health Records and make sure everything was correct. The list of medications and the list of diagnoses get longer every time I look at them. I guess it happens with age. Everything was fine. 

About the same time, I needed to have a blood test done for another doctor and another condition. This doctor's office has its own Electronic Health Record. I think I deal with 4 different EHR systems. 

One thing surprised me, however -- my Follicular Lymphoma diagnosis. It says I have grade 3 FL with extranodal activity. That's not correct. I have grade 1/2 disease, and no extranodal activity. 

My immediate thought was panic. It didn't last long, but I thought, "Did my last blood test show something and no one told me?" But that thought didn't last long. A blood test wouldn't show any of that, and I know for sure that I haven't had a biopsy recently. So the panic came and went pretty quickly.

But I thought about it some more, and decided it shouldn't be dismissed. It wasn't in my oncologist's EHR. It was in my general practitioner's record, which matters less, since she doesn't treat me for cancer. My guess is that someone entered the information in my record after looking at old notes, and mistook stage 3 (which I am) and grade 3 (which I am not). As you probably know, stage is determined by location of disease, usually determined by a scan. Grade is a measure of how aggressive the disease is, usually determined by a biopsy and looking directly as the cancer cells.

So why is this important? Well, accuracy is always important in medical records. And I've had a bunch of inaccuracies over the last few years that I can't explain easily. If someone is looking at a "conditions" page because they're trying to determine something like which treatment or medication to recommend, they may base it on comorbidities. In other words, if there's something inaccurate about a kidney condition, they may recommend a more aggressive treatment for another condition -- or maybe a less aggressive one. So accuracy just matters in general, even if it's about a condition that isn't being treated by a particular doctor.

Another reason accuracy is important is because of potential voluntary data sharing. There are more studies happening that rely on data sharing. In other words, researchers can learn a lot by looking at large numbers of patients' records. The Follicular Lymphoma Foundation did a webinar on this a few months ago. It's a really interesting way to contribute to research without being a part of a more traditional clinical trial. But for this to be valuable, the data has to be accurate.  

But there was something else that bothered me about the mistake. It's less about medical accuracy, and more about identity. I've spent 18 years as a stage 3, grade 1/2 Follicular Lymphoma patient. It's who I am. Obviously, that changes over time for many of us. We have successful treatment. Or treatment unfortunately stops working, and we need a new biopsy and a re-staging. FL is a notoriously unstable disease. I'm sure over 18 years I have gone up and down in stage.

But that's never been official. No biopsy, no scan in about 8 years. So the stage 3, grade 1/2 is who I am. And I don't like someone else telling me who I am.  And that's what that mistake was doing. 

It's a little strange. As much as I have enjoyed being a cancer advocate, I would have preferred to have not had the cancer diagnosis. I'm sure I would have been able to find something else fulfilling to do. So taking that diagnosis off of my Conditions page would have been just fine. But it's there. And I own it. And I don't want anyone else messing with it.

So I suppose the lesson here is to take some time to make sure everything is accurate on your Electronic Health Records -- all of them. I don't always pay attention to all of the details on them. They're like Terms and Conditions when you download an app -- just scroll through them and say Yes at the end so you can get to that doctor's visit that much faster. But the details matter, for now and for later.

 

CAR-T and Cures

The big news this week in the Lymphoma World is an article that was published in the New England Journal of Medicine yesterday. It describes long-term follow-up of patients with B Cell Lymphoma, including some with Follicular Lymphoma, who received CAR-T. The results were very encouraging, and that "C word" ("cure") is being used again. More on that after I describe the article. 

The article is called "Ten-Year Outcomes after CAR T-Cell Therapy for B-Cell Lymphomas." It presents results from 38 patients -- 24 who were diagnosed with Diffuse Large B Cell Lymphoma and 14 with Follicular Lymphoma, all of whom had refractory/relapsed disease (so they'd had at least one previous treatment).  They received just one infusion of the CAR-T treatment Tisagenlecleucel (also known as Tisa-cel or Kymriah) a median of 10 years ago. It's a pretty small study, but it has some important results.

I'll stick to the FL patients' results, since that's what most of us are here for. Almost half of the FL patients in the study had gone 10 years without a relapse. And for patients who had gone 5.4 years without a relapse, they continued to be Lymphoma-free after that. Most relapses occurred within the first year after treatment. 

I'll put this into a little bit more context. Early research on CAR-T treatments had kind of a 33/33/33 breakdown. For about 33% of patients, the treatment didn't work at all. For another 33%, it worked for about a year or less. And for the final 33%, it worked for more than a year. Those numbers aren't exact, but they're roughly accurate, and it's how I often think of CAR-T's effectiveness early on. Those numbers have also gotten better over time. So now, in this study, we're at 50% rather than 33% for long-term effectiveness. I can't see a breakdown for the other 33/33 groups, but they have to be smaller. 

Of course, CAR-T isn't perfect; half of the patients in the study did not have good long-term results. And there were side effects, too, to deal with. Two of the 38 patents had long-term low white blood cell counts, but there were no cases of long-term low red blood cells or ongoing anemia or low platelet levels. But perhaps more importantly, 9 patients developed a second cancer (including 3 with Acute Myeloid Leukemia, 2 with prostate cancer, 2 with lung-cancer (possible smoking-related), one with melanoma, and one with a T-cell lymphoma that affects the skin. All together, that is a higher incidence of cancer than the general population, though it is similar to the incidence for Lymphoma patients who received traditional chemotherapy.

What's most interesting about this to me is a press release from University of Pennsylvania Medicine, where the research occurred. Here's where the "C word" comes in:

Most relapses occurred within the first year after CAR T cell infusion, supporting the hypothesis that patients who experience a long-term response to CAR T cell therapy may be cured. "As oncologists, we use the word ‘cure’ with great care, but I am increasingly confident that CAR T cell therapy has the potential to cure a meaningful number of patients with B-cell lymphomas,” said senior author Stephen J. Schuster, MD, the Robert and Margarita Louis-Dreyfus Professor in Chronic Lymphocytic Leukemia and Lymphoma Clinical Care and Research and director of Penn’s Lymphoma Program. “At the same time, our work is far from done. This therapy does not yet work for everyone, and we are committed to understanding why so we can continue to improve the next generation of CAR Ts."

It's interesting to see both of things happening here -- that the word "cure" is used, and that the researcher is cautious about using it.

It certainly brings to mind the research that was published a few months ago that suggested a 15 year follow-up after R-CHOP might show that some patients were cured. I was hesitant to use the word "cure" then and I'm still hesitant to use it now. 

That's not to say it isn't possible, but it's still hard for me to wrap my brain around, 18 years after I was told it was incurable.

Last month, the Follicular Lymphoma Foundation published a blog post called "Could Some People with Follicular Lymphoma Be Cured? New Evidence Sparks Careful Optimism." It reports on an interview that the FLF's Chief Medical Officer, Dr. Mitchell Smith, conducted with the lead researcher on that study, Dr. Jonathan Friedberg. (They are both Lymphoma Rock Stars, by the way. I'm going to start using that label again, I think.)

I'm actually quoted in the blog post. And since I love to quote myself, here's part of what I said: "It opens up a whole new way for patients to think about FL: that some of us might be cured. I was diagnosed over 18 years ago… and I haven’t needed treatment since. I might fall into that category of patients who are cured, and yet I still have that small little bit of doubt and fear in my head."

I think that explains my feelings pretty well. Here's another quote from me: "It's going to take some courage from both doctors and patients to change our way of thinking...but what an exciting future it will be."

I think that explains things pretty well, too. I suspect we're going to see more long-term studies of FL treatments very soon. They are a lot easier to conduct than clinical trials -- all of the data is already collected. And I suspect we'll see a lot more doctors using the word "cure" as a result.

What an exciting future it will be, indeed. We have lots to look forward to. 

 

Jamie Reno

I want to take a quick break from ASCO and EHA to write about Jamie Reno, who died in April. 

I used to write about some people as Lymphoma Rock Stars -- people who did great things for the Lymphoma community, whether they were doctors, researchers, patients, or something else. Jamie was a Lymphoma Rock Star.

I didn't find out he had died until a couple of days ago. Jamie was a long-time journalist, and his most recent job was as editor of Breaking Cancer News, which I wrote about a couple of years ago.  The folks at BCN sent out an email to their mailing list, with a really nice tribute to him, two months after he had died. From what I can tell, his family wanted to keep things kind of quiet, and there wasn't much about it online. I looked at the Living with Follicular Lymphoma Facebook page to see if there was any news there, but there wasn't. There was nothing on the discussion board/support group that helped me so much 18 years ago. I thought maybe some old-timers there might have heard something. But there wasn't anything.

I'm not criticizing the family's decision in any way. As patients, we deal with our cancer in the way that makes most sense to us. And as family's, we mourn our loved ones in the way that makes most sense. I've been in the unfortunate position to have to decide how to mourn both of my parents' deaths from cancer. 

But at the same time, Jamie Reno really was a Lymphoma Rock Star, and I feel like there should be something said about that. I never met him, didn't know him, but he was definitely a presence in my life as a Follicular Lymphoma patient.

In 2008, when I was diagnosed, if you googled Follicular Lymphoma, one of the first things that came up was Jamie Reno's book Hope Begins in the Dark. It's a collection of 50 stories from Lymphoma patients and survivors. He was a life-long journalist, writing for Newsweek for 23 years, and winning a National Magazine Award as part of the Newsweek team that wrote about 9-11. He was a cancer survivor himself. He was diagnosed with an aggressive form of FL when he was 34, and went through CHOP. He was in remission for over 2 years, and when it came back, he tried Bexxar, a RadioImmunoTherapy. It gave him 28 years of remission. At some point, he left Newsweek and devoted himself to writing about cancer. In addition to Hope Begins in the Dark, he also wrote a book called Snowman on the Pitcher's Mound, about a 10 year old boy whose mom is diagnosed with cancer. The mom character's experience with cancer kind of parallels Jamie Reno's experience with relapsing and receiving RIT.

He was a musician, too, managed to get some great musicians to play on a CD that he put out.  

With all of the stories he helped to tell about cancer, it seems like his needs to be told to the people who haven't heard it before.

Death is always hard. Even the death of someone we never met can break of a small piece of us.

But maybe that little piece that is gone can be replaced by hope. That was certainly a message that Jamie Reno seemed to want to pass along. The email that I got from Breaking Cancer News talked about how much he emphasized the "good news" about cancer -- breakthroughs in treatment, positive stories about survival and courage, and the importance of hope.

The title of his book, "hope begins in the dark," echoes a quote from the writer Anne Lamott. I honestly don't know if she said it first, or if it came from somewhere else, but here's what she said: "Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up."

That's a fitting message for cancer patients, and especially for those of us living with Follicular Lymphoma, who do plenty of watching and waiting and working and not giving up.

Our stories matter. As I said, much of my FL experience had Jamie Reno's story lingering over it, in very good ways. It always helps to have a model, someone who has been there and has done OK, someone who has been in the dark and found a way out.

I try to be that for other FL patients. Now you know why.