When the Doctor Calls

Yesterday morning on my way to work, I got a phone call from an unfamiliar number. My wife was driving, which makes it easier to answer phone calls, but I didn't recognize the number and started to put my phone away.

But then I remembered that I was waiting for a call from the dermatologist.

I had an appointment last week so she could check on the surgery I had a couple of months ago to remove a Basal Cell Carcinoma and see if anything new had popped up. She found a couple of Actinic Keratoses on my head, as usual, and froze them off. Then she checked the rest of my body, and finally my face. (I like to think she saves the best for last.) She noticed a small bump next to my eye. It's been there for years. 

"It seems different," she said. "I think I'd like to biopsy it, just to make sure it isn't a Basal Cell."

She removed it and said she'd call me with the results in a week.

So I remembered that when the phone rang. I picked up and put it on speaker phone.

"Hello, is this Robert?" she said. (Doctors always call me "Robert," rather than the more familiar "Lympho Bob.")

"Yes it is."

"This is Dr. M. We have the results of the biopsy...It's benign." She said what kind of growth it was, which I don't remember, and said if it grew back, and it worried me, she could biopsy it again, but it was all fine for now.

I thanked her and hung up.

My wife said, "Well that's a nice way to start the day."

I agreed, and said, "When she started talking, I was trying to get a sense of whether this was going to be good or bad from here tone of voice."

My wife laughed. "Me too. She sounded happy, but I didn't know if that was because it was good news or because she was trying to be positive about bad news."

It's amazing to me that even after 17 years, that same feeling comes back, and those same strategies kick in. I've had several conversations with doctors about blood cancer diagnoses -- the first diagnosis 17 years ago and then results of scans, or of blood work that was a little off. And now I've had two skin cancer diagnoses, and a couple of others that ended with negative biopsies. 

And every time, every conversation, that strategy kicks in of trying to guess what's coming. The actual diagnosis -- yes it's cancer or no it isn't -- comes at the end of the sentence, after about 10 seconds. But somehow our wonderful brains make a thousand calculations in that 10 seconds. Is her voice happy or serious? Does she sound busy and this is a routine positive call, or is she quiet, behind closed doors, where she can focus on giving negative news?

There are even more clues to analyze when it's person. Did it seem like she lingered outside the door, trying to get up her courage? Is she avoiding eye contact? Did she breeze right in, lighter on her feet because this was going to be an easy conversation?

I'd like to say I've gotten better at doing those calculations after 17 years. I'm not sure I have, and I'm not sure it's a skill I actually want. 

But I also know that I'm not the only one who goes through that process, looking for clues and making calculations in mere seconds. We cancer patients are like computers. It's not artificial intelligence. It's about as real as it gets.

And that was my thought as we drove on to work. It just gave me a sense of belonging, of being part of a large group of people who unfortunately don't want to be a part of that group, but are stuck with it. But we've found each other, and that's what matters. The things we go through are not just things that we go through alone. There are things that we share that connect us -- experiences, feelings, desires. We are not alone.

My wife was right. It was a nice way to start the day. 

Take care, everyone.

R-Squared in the Real World

As I mentioned in my last post, the medical journal Haematalogica recently published results of a real-world study of R-Squared. The quick summary: R-Squared still works well for Relapsed/Refractory Follicular Lymphoma. The article is called "Rituximab and Lenalidomide for the Treatment of Relapsed or Refractory Indolent Non-Hodgkin Lymphoma: Real-Life Experience."

First some background on this (or a couple of reminders for those of you who have been following for a while). R-Squared is short for the tretament combination of Rituximab and Revlimid (also known as Lenalidomide). Those two R words are usually shortened to R-Squared. (Interestingly, this article uses R-Len to describe the combination, which I have seen elsewhere, too. Revlimid is the brand name for Lenalidomide, so they're trying to avoid using the brand, I guess. I'm sticking with R-Squared because that's what I have been using since I first wrote about it in 2012, and I'm getting too old to change now.)

This is what is known as a "real word" study. That's an actual medical term. Many articles in medical journals that describe the results of research are describing the results of clinical trials. Trials are necessary for a treatment to get approved, and the patients in the trials are restricted in many ways. For example, patients with previous heart problems might be excluded from a trial because the researchers need to know if the treatment will cause heart problems. So only patients with healthy hearts are allowed in the trial.

But those restrictions can also make it hard to know if a treatment is appropriate for people who have lots of comorbidities (that is, other health problems). So after trials are over and a treatment has been approved, and after the treatment has been given to many patients, with no restrictions, some researchers will conduct "real world" studies. These are studies of how a treatment affects all patients, not just the small group that was allowed into the trial. They can confirm that a treatment is as safe and effective as it first seemed to be. 

R-Squared is an important treatment for R/R FL because it was the first non-chemotherapy that proved to be just as effective as traditional chemotherapy. So getting real-world results is important.

The researchers did a fairly small (84 patients) retrospective study, meaning they looked back at the medical records of the patients who had received R-Squared between 2013 and 2023. About 82% of those patients had been diagnosed with Follicular Lymphoma, so those are the ones we'll focus on (the rest had Marginal Zone Lymphoma, another indolent, slow-growing blood cancer). The median age for the patients in the study was 65, with the range being 39 to 94. (I find that highest age kind of fascinating, and I think it says something about how much easier on the body R-Squared must be compared to traditional chemotherapy.) 

The results were in line with what the clinical trials from several years ago had suggested. The Overall Response Rate was 82%, with a 52% Complete Response Rate. (The CRR for FL patients was 55%, and 40% for the MZL patients.) The median follow-up for the patients was 22 months, and the median Progression-Free Survival was also 22 months (the disease hadn't gotten worse in that time). The Overall Survival at two years was 83%, and the median duration of that Complete Response was almost 4 years. Patients in the study who had bulky disease (larger lymph nodes) or who were refractory to Rituxan (that is, that treatment had stopped working for them) were more likely to have a shorter Progression-Free Survival. 

As for safety issues, the side effects were also in line with the earlier clinical trial results. The most common side effects were low blood  ell counts, fatigue and gastrointestinal problems like diarrhea and constipation. As for severe side effects, the most common were low white blood cell counts (making patients more susceptible to infection) and low platelet counts (making them more susceptible to risk of bleeding). There were no new side effects reported. 

The researchers in the study see all of this as very positive, and their main take away is that R-Squared should continue to be used as a comparison in clinical trials. That is, if a new treatment shows it is just as effective and safe as R-Squared, then it should be approved.

I see another important take away from this, for what it's worth. I think R-Squared isn't used as much as it should be. This isn't the first research that shows "real world" success for R-Squared. And yet, according to a survey from the Follicular Lymphoma Foundation from last year, only about 6% of respondents had been given Lenalidomide as a treatment. (About 10 times as many had been given traditional chemotherapy.)

A big reason for that is probably just habit. For Relapsed/Refractory disease, chemotherapy has always been the go-to option. It seems like a whole lot of treatment recommendations boil down to "that's how we've always done it," especially in a community clinical (rather than a research hospital). That's not to say chemo is a bad choice, and is probably an excellent choice for aggressive FL. But it doesn't necessarily have to be the first and only choice.

I wonder how much newer treatments like CAR-T and Bispecifics will cut further in the use of R-Squared. It could end up being one of those treatments like RadioImmunoTherapy that had great results but just kind of went away because of under-use. (Though RIT had its own set of problems that made it under-used.)  

The big lesson here? Understand all of your options, and make sure your oncologist is considering them all. Best to keep up with these things and have be able to have a conversation when the time comes, rather than having to make a decision under pressure.

Of course, that's why you're here, isn't it?

More soon. Take care. 

Rituxan, Watching and Waiting, and Reading Carefully

I was preparing to write a post this morning about some new research on R-Squared (you'll get that soon) when I got an alert about a  new piece in the ASCO Post about Watching and Waiting. As someone who spent two years watching and waiting, I'm always very interested in research on this subject. What I found was very interesting, but what was more interesting were the lessons and reminders I got about reading carefully. 

The ASCO Post is kind of daily newsletter for oncologists, and they often include stories about research. One of today's stories is titled "Benefit Suggested for Early Treatment of Advanced-Stage, Very Low–Tumor Burden Follicular Lymphoma," which describes a presentation at ASH (which I somehow missed). A group of oncologists from Japan wanted to know if their Follicular Lymphoma patients who were able to watch and wait were better off getting treatment with Rituxan right away instead of watching and waiting.

As I said, this always intrigues me, since I watched and waited for two years and then had 6 rounds of Rituxan. It seems like every few years, some researcher takes on this question, and finds one or the other approach is better. And then a couple of years later, someone presents data that says the opposite. For what it's worth, I am happy with the choice I made, and I think it's ultimately a personal choice. What this kind of research leaves out --always -- is the emotional factor. No matter what the data says, some people won't like the idea of knowing they have cancer and not treating it. That has to be a factor, no matter what the numbers say.

But back to the study from Japan. The researchers from the study say they usually recommend immediate treatment instead of watching and waiting, and so designed a study to test if their recommendation was a good one.

They designed a phase III clinical trial called the FLORA trial (it's phase III because the safety and effectiveness were already determined long ago -- this isn't a new treatment, so phase I and II aren't necessary). They studied 292 patients with low–tumor burden Follicular Lymphoma and divided them into two groups. The first had very low tumor burden, meaning the largest mass was less than 5 cm, the patient had two or fewer nodal sites, and no effusion (no fluid collecting in tissues). The second group had intermediate tumor burden, meaning the largest mass was more than 5 cm but less than 7 cm, had three nodal sites, and no serious effusion. Half of the patients were immediately given Rituxan, and the other half watched and waited until tumors grew enough to be classified as intermediate. The end point for the study was Event-Free Survival, which they defined as progression to high tumor burden, initiation of chemotherapy and/or radiotherapy, transformation to a more aggressive lymphoma, or death.

The results were interesting. After a median follow-up of 2.5 years for all patients, the ESF was much better for the patients who had been given Rituxan immediately.The events that caused the patients to no longer be "event free" were mostly transformation and having to begin chemotherapy. Twice as many patients in the W & W group transformed as in the Rituxan group (18 versus 9). The Progression-Free Survival rates were similar (50.6% in W & W versus 49.6% in the Rituxan group) and so were Overall Survival rates (98.4% versus 97.3%).

The researchers conclude that the difference in EFS is enough to justify giving patients Rituxan immediately rather than having them watch and wait.

Here's where the ASCO Post article gets interesting.

The editors asked a Lymphoma expert to take a look at the study. Dr. Andrew D. Zelenetz, who is the Medical Director of Quality Informatics at Memorial Sloan Kettering, "expressed some concerns" about the study. Among them were two things that I noticed with my non-expert eye -- there was no difference in Progression Free Survival or Overall Survival. In other words, taking Rituxan immediately won't make you live longer than watching and waiting, and it won't make the time until you need treatment again any longer. Those things have always been the criticisms of watching and waiting research -- no matter what the researchers do,there is never an OS benefit to one or the other. Patients end up living just as long no matter which option they choose.

Dr. Zelenetz also points out some other problems with the study. Their definition of "Even-Free Survival" is non-standard. In other words, when other studies talk about EFS, they do in a different way than this study does, so it's hard to compare them. In this study, an "event" only counts of it results in the patient being given chemotherapy or radiation. So taking more rounds of Rituxan, for example, doesn't count as an "event," and if that happened, it would stretch out the EFS time a little more. According to Dr. Zelenetz, the study is set up so the Rituxan group will come out ahead.

That doesn't mean the researchers were being dishonest. But it does mean that it's hard to compare this study with others, because they aren't using the same ways of measuring the data.

So what are the lessons here -- for me, anyway?

First, it seems like there is still no answer to the question "Is it better to treat immediately rather than watch and wait?" And that doesn't surprise me. I've been following that debate for 15 years, and here hasn't been anything new about Rituxan or about watching and waiting in that time, so it seems likely that any difference is just statistical.

Second, it's a reminder that Peer Review is essential with cancer research. A presentation at ASH or ASCO is not peer reviewed. That is, it's a presentation of data that hasn't been checked out first by other experts. When I write about ASH or ASCO, I always try to remind you (and myself) "this is a phase II trial, so it's still early in the process," or something like that. What Dr. Zelenetz has done here is what peer review is supposed to do -- ask questions, point out problems, make suggestions for improvement. If the researchers had tried to publish this in a medical journal, peer reviewers (others Lymphoma experts) would have pointed out those problems, and if the researchers couldn't fix them or explain them, the article wouldn't get published. ASH and ASCO presentations about new treatments are always exciting, but they also need the reminders that they have lots of time before they end up available to patients, and less than 10% of cancer treatments that start the clinical trial process actually end up getting approved.

Finally, for me, this is an excellent reminder to read carefully. I always read with hope. I want new treatments, exciting developments, and something to look forward to. But it's also very easy to be sucked in by a headline that's trying to catch a reader's attention. We all need hope -- it gets me out of bed in the morning. But we don't need false hope. And sometimes that means reading with a careful, critical eye, and deflating that hopeful balloon a little bit. 

I'll get back to work on that R-squared post. Look for it soon.

European Approval for CAR-T

A quick post today, because I'm visiting family and I like playing with my nieces and nephews more than I like writing about cancer. 

A few days ago, the European Commission gave approval for the CAR-T treatment Lisocabtagene maraleucel (also known as Liso-cel, also known as Breyanzi) for treatment of Relapsed or Refractory Follicular Lymphoma after two previous treatments.

This is, of course, excellent news. 

About six weeks ago, the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) recommended the approval, so now it is official. Liso-cel should be avaioable for patients who meet these criteria in the European Union, as well as Iceland, Norway and Liechtenstein.

Liso-cel has already been approved in the EU for a few types of lymphoma, including R/R Diffuse Large B Cell Lymphoma , high grade B Cell Lymphoma, and Grade 3B Follicular Lymphoma. The FDA gave the same approval for Liso-cel last year in the U.S.

It will be very interesting to see how quickly CAR-T is approved for first-line treatment for FL. As far as I know, there has not been such an approval yet, anywhere. There are certainly clinical trials in place for this group of patients, with some good initial results. It will be interesting to see how popular CAR-T becomes once that is in place.

There are some fascinating politics and economics when it comes to getting a treatment approved. Most companies take the strategy of trying to get third-line approval with their initial application. It is the most likely to get approved, because there is the greatest need for new treatments among patients who have already had a couple that didn't work. Once that approval has been given, and some money is coming in, it's easier to work on trials to get first-line approval. (If you want to read a fascinating book about the development and approval process for Ibrutinib, check out For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug by Nathan Vardi. A great behind-the-scenes look at the process.)

That's all for now. I need to go see what my niece learned in her Scottish Country Dance class.

Real World Outcomes for Older Patients with FL

I'm way behind on my Follicular Lymphoma reading.

Almost a month ago, the medical journal Blood Neoplasia published an article called "Real-world treatment patterns and clinical outcomes in patients with follicular lymphoma: A SEER-Medicare analysis." It's very interesting, and I want to share some thoughts about it with you.

The article looks at "older" patients, meaning at least 65 years old. That's an interesting definition for "older," but we'll talk about that another time. 

The study looked at data from the SEER database. SEER (Surveillance, Epidemiology, and End Results)  is a massive database of information about cancer patients in the United States. When a patient is diagnosed, their oncologist enters information about their diagnosis, treatment, and outcomes, and researchers can use this database to do retrospective studies -- that is, looking back at patients from the past. I think those two things are important to keep in mind -- the information has to be entered by doctors (which might limit what is in there), and it looks at the past, which might not tell us much of anything about the future. A patient who was diagnosed 17 years ago (like me) had fewer options than one diagnosed a year ago (like many of you). The study covered patients who were diagnosed between 2000 and 2017. That's significant.

The study looked at two things -- the treatment pattern that the patients with FL received (what kind of treatment, how many treatments) and the outcomes (especially how long they lived). The 13,423 patients in the study were all at least 65 years old when they were diagnosed, with the median age being 76 (meaning half were older than 76 and half were younger). The median follow-up was 57 months (just under 5 years).

The researchers found that 38% of the patients in the study never needed treatment, watching and waiting for the entire time they were being studied. So 62% had at least one round of treatment.Of those, 23% had two or more treatments, 9% had three or more, and 4% had four or more. Chemoimmunotherapy (something like R-CHOP or R-Bendamustine) was the most common treatment. This is not surprising, given that non-chemo treatments became much more widely available after 2017 (things like CAR-T, bispecifics, R-squared, and even some inhibitors). 

Maybe most important (from my perspective as a patient) is this sentence: "Survival rates increased significantly over time."

For patients diagnosed between 2000 and 2005, the median Overall Survival was 65.4 months (about 5.5 years). For those diagnosed between 2006 and 2011, it was 83.9 months (just about 7 years). And for those diagnosed between 2012 and 2017, the median was not reached. That means that at least half of those patients were still alive when they did the study, since you need to find a half-way point to calculate a median. 

And keep in mind, too, that these were "older" patients, with a median age of 76. So if half of them were 76 or older, and were living for at least 7 years (or, to age 83), that puts them right in line with the median life span in the U.S. In fact, it's actually better than the current life span in the U.S. by about 5 years. 

That's all very good news.

It's important, too, to point out that the patients in the study who received more treatments had a lower OS than those who only received one treatment. That makes sense -- one treatment likely meant a less-aggressive version of FL. And patients who were POD24, meaning they had immunochemotherapy but had their disease return within 24 months, also had a lower OS. And patients who were diagnosed on the older end of the scale, or who had advanced FL stage, or who had a high comorbidity index at diagnosis (that is, had lots of other health problems) also had a lower median OS.

All of that said, this is an excellent reminder that numbers don't matter. Statistics tell the story of a large group of people, not of any individual patient. And statistics that are 25 years old (when this study began) don't tell us much about people who were diagnosed yesterday. The treatment options available today are so much better than they were back then -- more effective, more safe, just more of them. As someone who has been following all of this for 17 years, I can tell you -- the advances in cancer treatment are astounding.

So the lessons from all of this are clear to me, and it's the same lesson that I've known since I first started really thinking about statistics. The first lesson is -- don't pay attention to statistics. It's too easy to get into your head that numbers are destiny, and if you read that the Overall Survival for some group that you belong to is a certain number, then that must be your destiny. It isn't. It's the median number for a group from the past and has nothing to do with you. You're better off just not even thinking about statistics.

But I also know that patients are a certain way, myself included, and we're going to look at statistics. So if you are so inclined, then go back up to that statistic above. You know, the one that says older patients with FL have a median life span that is in line with the general population in the U.S. Pay attention to that one.

And if you are younger than 65, know that this kind of research keeps pointing out that same thing, no matter what the age of the patients is that are being studied. Taken as a whole, patients with Follicular Lymphoma have a life span that is close to the general population. That doesn't say anything about any individuals, but if you're going to go around reading statistics that don't have anything to do with you, then at least be wise enough to pay attention to the positive ones.  

Webinars for Follicular Lymphoma Patients

There are several free webinars coming up soon for patients with Lymphoma, from a couple of organizations that I have highlighted before.

First, the Lymphoma Research Foundation has three webinars coming up in their "Ask the Doctor" series. In these webinars, a Lymphoma expert gives an overview of the topic, and then answers questions from patients.

The first one is tomorrow, March 12 (sorry for the late notice -- I just found out about it).  The topic is "Information for Newly Diagnosed Patients." Even if you were diagnosed a while ago, this could be very helpful in giving you an overview. The presenter is Dr. Peter Riedell from the University of Chicago. This isn't about Follicular Lymphoma only, but will cover all Lymphomas (which is a lot), but my guess is, since FL is the most common indolent Lymphoma, it's going to come up a lot. You can find more info here and a link to register. 

Next up the LRF is "Information for Patients with Relapsed/Refractory Lymphoma," presented by Dr. Reid Merryman of the Dana-Farber Cancer Institute. This one is happening next week, March 18 from 2:00-4:00pm ET. Even if you haven't relapsed (you've had no treatments or just one treatment that has worked for you), this could be valuable. I'm always in favor of having information before you need it. Like the first webinar, this one will include time for Questions from Patients. You can find out more and register here.

Finally, the LRF is doing a webinar in Spanish on April 17, "Pregunte al Doctor Sobre el Linfoma." My Spanish isn't perfect, but from the description, it seems like this is a general webinar, rather than one aimed at specific populations like the other two are. Same format -- a presentation from an expert, Dr. Enrique Diaz of The University of Texas Health Science Center at San Antonio, and then time for questions to be answered. You can find out more and register here.

Finally, the Follicular Lymphoma Foundation is holding a webinar called "When FL Changes: Understanding Progression & Transformation." This webinar is being held because a whole bunch of FL patients asked for it. Certainly, this is thing that concerns most of us -- what happens when a slow-growing disease speeds up, or even changes into a whole different cancer. This webinar is being held on March 27 from 9:00-10:00am ET. It will also feature a presentation and time for questions. The presenters are Dr. Mitchell Smith, the Chief Medical Officer for the FLF; Dr. Carla Casulo Assistant Director of Cancer Research Training and Education at the Wilmot Cancer Institute in Rochester; and Fiona McMullen, a Follicular Lymphoma Patient who experienced transformation. Should be an excellent presentation. You can read more and register here.

Keep yourself informed. Consider registering.

Ibrutinib, Obinutuzumab, and Venetoclax for FL

Every now and then, someone writes a comment, and my response to it goes on so long that it ends up being as long as some of my posts. In that case, I decide it's easier to just write a response as a post in the main blog, rather than in the comments.

This post is one of those responses.

Reader Shelly wrote a comment last week, asking if I'd heard about the combination of Ibrutinib, Obinutuzumab, and Venetoclax for treating Follicular Lymphoma. Someone in the FL Facebook group had written about his experience in a clinical trial with this combination. He said the trial oncologist estimated that the combination had knocked out his FL in about 3 weeks, confirmed by a PET scan three months later, though he continued in the trial for almost two years. He said he had stage 3 FL, with 10 high burden tumors.

It sounds like an excellent trial. I'm very happy that it was successful for that patient.

The combination of Ibrutinib, Obinutuzumab, and Venetoclax has already been pretty successful for Chronic Lymphocytic Leukemia (CLL), another slow-growing blood cancer. That doesn't mean it will work in all blood cancers, of course. 

Obinutuzumab is a monoclonal antibody (like Rituxan) that has been approved for use on FL. Ibrutinib is a BTK inhibitor that has been very successful in treating several blood cancers, but it has never had a successful trial for treating FL. Venetoclax is similar, in that it has been successful in treating several blood cancers, but not FL.

If only one out of three has been successful in treating FL, is it worth trying them in combination?

Absolutely. Cancer is such a complex thing, it's hard to know what is going to work. Inhibiting or blocking one thing on its own might not work, but targeting and blocking several things at once might do the trick.

The Ibrutinib, Obinutuzumab, and Venetoclax combination for Follicular Lymphoma is in a phase 2 trial, which is probably the trial that the person from the Facebook group is a part of. I can only find one source discussing any results from the trial -- an article in the medical journal Blood from November 2022. In it, the authors discuss the early results of the trial. Eight patients were involved, with a 12 month follow-up. At that time, all 8 had shown a Complete Response, which is impressive. Side effects included fatigue, diarrhea, low white blood cell counts, rash, and low platelet counts. Two patients left the study by choice, and another had to leave because of side effects. The other 5 remained in the trial.

I'm not aware of any other published follow-up.

According to ClinicalTrials.gov, the trial is still ongoing, actively recruiting patients. The goal is to have a total of 40 patients in the trial, so if they are still recruiting, they probably haven't met that number yet, though the researchers estimated that they would finish recruiting in a few months.

It brings up an important question -- if a clinical trial had a 100% Complete Response Rate early on, why didn't it immediately get more patients?

I think one reason is purely practical. The trial is being conducted at four cancer centers in California. Many large trials are conducted in canters all over the country, and often in multiple countries. With lots of other options, I don't think many patients will travel to California. So the participants are likely limited to FL patients in that one state.

And another reason is one I just mentioned -- there are lots of other treatment options available. As I keep saying, CAR-T and bispecifics are what get lymphoma specialists excited these days. Treatment with a combination like this, especially if it requires travel, probably isn't something that oncologists will recommend. 

And there could be a third reason, having to do with the combination itself. It's possible that some oncologists would say "One out of three isn't good enough," despite the early success of the trial.

All of that is just speculation from me -- I have no insights into why specific oncologists would or would not recommend a trial.

This seems like an excellent time to remind everyone that I am not a medical doctor, or even a cancer researcher. I'm just a Cancer Nerd -- a patient who reads a lot. The best person to talk to about treatment options is always your own oncologist. 

So if the question is, would this trial be something to talk to my oncologist about?

The answer is, Absolutely, especially if you live in California. The published data from the trial is limited, and the lived experience of the person from the Facebook group is fantastic. But an oncologist would be the one to suggest whether or not it is worth looking into.

Shelly, I hope this answers your question. Thanks for the comment.

Treatment Approval News

There have been a few announcements in the last couple of weeks related to treatment approvals by the FDA and other regulatory bodies. I thought I'd give you a summary here. 

First, in my latest attempt to provide FL news from outside the United States: The Ministry of Health, Labour, and Welfare in Japan has approved Epcoritamab for Relapsed or Refractory Follicular Lymphoma. Epcoritamab is a bispecific, and the approval came from the results of the EPCORE NHL-1 clinical trial, which was conducted in 15 countries. Epcoritamab was approved in the U.S. last June. I don't hear a lot about Folllicular Lymphoma is Japan, which is too bad. My youngest child studied in Japan for four months, so I've learned about the country and culture. Looks like a great place to visit someday. It's always great to have another treatment available to people, no matter where they are. 

Second bit of news: The FDA has approved a generic version of Lenalidomide (Revlemid).  Lenalidomide is best known to patients with FL as half of the R-Squared combination (along with Rituxan). But it was first approved in the U.S. in 2005, and is now used to treat several different blood cancers. This approval is for capsules in different strengths, from 2.5 mg to 25 mg. (Studies on FL patients are usually at 20mg, though dosages can be different for different patients). In theory, a generic version of a treatment means the cost will come down, since the original developer has had time to recoup the costs of research and marketing and take some profit. We shall see. The new generic version should be available in January 2026.

Finally, The FDA has accepted the resubmission of the Biologics License Application (BLA) for  Odronextamab for Relapsed/Refractory FL. Odronextamab is another bispecific. It was approved by the European Commission in August 2024, but the FDA was more cautious. The makers of Odronextamab had submitted data from a phase 2 clinical trial, but the FDA wanted to see data from a larger phase 3 trial. It did not reject the Odronextamab application based on effectiveness or safety, but only because it wanted to see more data. So they now have that data. It will be interesting to see what comes of this. My guess is that it will be approved, but there were some concerns about side effects in the initial trials (about 16% of patients had to drop out of the trial because of severe side effects. This application will have more data on that, and the FDA can make a decision based on it all. 

I'll certainly keep an eye out for news about the Odronextamab application, and any other treatment approval news that affects us as FL patients.

 

Time Toxicity

I got a press release from Penn Medicine about a clinical trial they are conducting about a text-messaging tool that allows cancer patients to spend less time on appointments -- or, at least, the time waiting during appointments. 

The study is meant to address "time toxicity." 

If you’ve ever read a medical journal or clinical trial informed consent form (or this bog), you’ve seen the word “toxicity.” It means the physical side effects that are common with a particular treatment. Things like low blood counts or numbing in the fingers and toes. Most of us have dealt with this kind of toxicity.

A few years ago, I started hearing more about “Financial Toxicity” – the kinds of financial side effects that some about with cancer treatment. These are things like the cost of treatment, whether the full cost or whatever insurance doesn’t pay for. But also medications that we need to buy to deal with the physical side effects of treatment. And maybe the yoga or massages that help us cope mentally. But financial toxicity also includes things like the time we miss on our jobs.

As I've written about, I’ve read about Financial Toxicity because more oncologists are trying to pay attention to it. They’re making sure that the plans they formulate for us are not going to bankrupt us.

Time Toxicity is similar. It’s about a different set of side effects – all of the time that it takes to be a patient. This includes going to appointments at the oncologist office, and the blood draw station, and the imaging center, and waiting in line at the pharmacy. But it also includes things like taking naps to deal with fatigue, and even just staring at the wall and worrying.

The study from Penn Medicine involved an app that patients could use to check-in before treatment. It's not a Follicular Lymphoma study, though the patients did have cancer. They were able to use the app to let their medical team know about any symptoms they were experiencing before they received an immunotherapy treatment. The idea was that, if they had symptoms that would have meant they couldn't receive treatment, they were able to avoid the time it took to drive to the appointment, wait to be seen, have someone ask about the symptoms, have the medical team discuss it, and then determine that they were or were not able to have the treatment. 

What's interesting is that this was set up as a clinical trial. It allowed them to measure whether or not the app was effective and safe. If the app wasn't accurate, then that would affect how well the treatment worked and whether or not it hurt the patient. It wasn't just a kind of "this saved time, and that's always good" kind of thing.

One of my big concerns with something like this is that it might save us some time as patients, but then that time gets used elsewhere. So instead of seeing 10 patients a day, the oncologist can see 12 or 15. When concerns about time are all about "efficiency," someone loses out -- usually the patients. It means less time with the oncologist, because the priority is getting through as many patients as possible.

This study doesn't seem to be prioritizing "efficiency" and disguising it as concern about patients. Making it a clinical trial seems to help avoid that. It really is about effectiveness and safety, the same as any other clinical trial.

But it does make me think a lot about time, and how much time toxicity affects us.

A  work colleague of mine recently finished a successful year-long treatment for cancer. I don't know what type it is; they are very private about this experience. That is certainly their right. 

This colleague is still working, and is lucky to have a job that can be very flexible. Part of my job involves planning things out for us at work about 12-18 months from now. I had to tell this colleague how they fit into the long-term plan, and they were very concerned about it. “I don’t know if I can do this,” they told me. “I have brain fog, I’m exhausted all the time. By mid-afternoon, I just want to curl up and go to sleep.”

I started to say something, but I stopped myself. What I started to say was, “Yeah, but we’re talking at least a year from now. You’ll be fine then.”

I stopped myself because, of course, neither of us, both cancer survivors, knows where we’ll be in a year. But even more importantly, I know how cancer can mess with someone’s sense of time. It’s about not wanting to think too much about the future, because all we can think about is the present. It’s hard to imagine a time when we won’t be exhausted or worried or in pain. 

It's a complex thing, our relationship with time. 

Like Financial Toxicity, I hope more doctors are paying attention to Time Toxicity, and the essential elements of our Quality of Life. Like that ASH study on Travel Burden, this study from Penn Medicine seems to show that it's becoming more and more of an issue for oncologists. I hope that continues.  

Young Adults with Follicular Lymphoma

I know many of you are "unconventional" Follicular Lymphoma patients. By this I mean you are young -- often much younger than the "usual" age for a Follicular Lymphoma patient. I was 40 when I was diagnosed. I know how it feels to get that shock of a diagnosis when you're young and healthy. (And I was healthy -- regularly running in 5k races. The healthiest time of my life, probably.)

So for those of you in this group, I have some good news! One the blog's readers, Fer, has started a Facebook group for younger folks with Follicular Lymphoma. You can find it here.

I've had a really nice email exchange with Fer over a couple of months, so I know he's a very thoughtful and interesting person. And he clearly cares about other young FL patients, too. I think this is a great idea -- something I wish had been around was I was diagnosed -- and I think Fer will do a great job with it.

This is the message Fer sent to the large Living with Follicular Lymphoma Facebook group describing the new group:

Hey everyone, I wanted to share something I've been thinking about.

As we all know, FL affects people differently, and I think age is an important factor in that sense. A lot of times, I find myself reading about someone’s experience and wondering whether this an FL thing or an age thing? Many symptoms, treatment responses, and even risks change with age.

Also, when looking for reassurance, I sometimes read things like, “I got to see my grandchildren grow up” or “The doctor said it’s functionally curable.” While everyone's perspectives are super valuable, they don’t always apply to someone who’s still in the middle of building a career, starting a family, or figuring out what this diagnosis means for a longer timeline.

After discussing it within the community and with the admins, I made a Facebook group for young adults with FL—meaning people who were diagnosed before or in their early 40s. The goal is to have a space where we can discuss the unique aspects of facing FL at this stage in life.

The age cutoff isn’t meant to be rigid but a mere suggestion—it’s more about life stage than a number. Many of us are in a phase where we’re still making big life choices, and the way we think about FL reflects that. If you feel like this group would be relevant to you, you’re welcome to join.

This isn’t about separating from the main group—this community is vital for me and I'm sure for you too, and I'm immensely grateful for it. It’s simply about having an additional space to talk about things that might not always resonate with the wider FL experience. If you were diagnosed early in your life and this sounds helpful to you, feel free to join!

Thanks, everyone!

As I'm writing this, there are already over 100 people in the group. And I think there will be a whole lot more joining. I tried doing a little research on young adults with FL, and as many of you probably know, there is very little work done. Some advice -- if you're looking at research in this area, pay really close attention to the dates of the articles. There are a few things out there that try to guess what the Overall Survival rate is for FL patients under 40. They are reputable sources, but they're old -- about 10 years old. That may not seem like a long time, but 10 years in Lymphoma research is like 100 years in other area. OS  rates that were calculated in 2015 were looking at data from 1995 -- just before Rituxan was approved. So that research doesn't account for R-squared, CAR-T, Bispecifics -- any of the exciting treatments that have come about lately.

My point is, there is still a lot that we don't know about young adults with FL, and what we do know is out of date. Whatever picture you have of your situation as a young adult, it is probably far, far better news than it seems.

One more bit to add to my rant -- when we read that FL is "usually something that older people get," I really have no idea what that means. I haven't seen anything definitive to back that up. What does it mean that the "most people" who are diagnosed are over 65? Does it mean that the median age s 65 -- so half of the people diagnosed are UNDER 65? Or under 60? 

My point here is, I think there are far more young people with FL than the medical community recognizes. I did some work recently with a coupe of other FL patients. One was diagnosed in his 20s, and the other in his 30s, and I was diagnosed at 40. Was that a random grouping? Or are there many more of us than it seems?

The Lymphoma community needs to do a better job of recognizing this and accounting for the different emotional and physical needs that come when someone is diagnosed under 40 than when they are diagnosed at 65. I hope that happens soon.

In the meantime, this Facebook group is a great start. I hope some of you can take advantage of it.

And thank you, Fer, for getting this conversation started. 

Oncologist Appointment

I have been spending far too much time lately with medical doctors. Three appointments in three weeks, and all of them related to cancer (diagnosing it, removing it, and checking up on it).

The first two were about my skin cancer diagnosis. Yesterday's appointment was my 6 month Follicular Lymphoma check-up with my oncologist, Dr. H. 

I'll get the important stuff out of the way -- everything continues to look fine.

*************

This was one of those check-ups that should have been fairly peaceful, but wasn't. At least not the lead up to the appointment. I'm just a lot more on edge these days than I usually am, which didn't make things easier. But I also offered to help a friend with something in the morning, and it took longer than expected, so I left home for the appointment a lot later than I would have liked. The drive in was a little stressful, because the roads are lined with snow banks, so everyone is driving a little more weirdly than usual. When I got to the hospital for my appointment, there was a fire truck blocking the garage entrance. (Didn't seem to be dealing with an emergency; just parked.)

I drove into the garage through a different entrance. This garage was built in the 1960's, and the ramp to get up to the higher floors is a large spiral, wide enough for one car, with concrete walls on the sides. So you're always looking around a corner, hoping there isn't anything coming at you. I've been in this garage dozens of times, and it just occurred to me how appropriate this is for a Cancer Center parking garage -- you never know what's coming at you and you hope there isn't anything coming your way.

The garage was almost full, and the few empty spaces had cars parked in them poorly so there wasn't enough room for me to get into one. I had to drive around for about 10 minutes before I could get a space.

I had to keep reminding myself that everyone is on edge in a Cancer Center parking garage. No one is thinking clearly. Everybody's brain is focused on other things.

That forced me to take a deep breath and calm myself down.  But it's hard to be kind when you're focused on yourself and all of your own baggage.

My first stop was at the attendant's desk. Everyone who enters the hospital gets a visitor's badge. The desk attendant had a nice long conversation with the person in front of me. I tapped my foot impatiently. Then I remembered how nice it must have been for that person to be remembered  by the desk attendant. Probably made her day. [Deep breaths. Find inner peace.] Things got better from there. I got out of my own head.

The next stop was the blood draw station. That went pretty easily. The phlebotomists at the Cancer Center are really very good -- the needle goes in smoothly and they rarely leave a bruise. And they're polite and friendly. It sounds funny, but it lightens the mood a little to get a good blood draw.

I got in to see Dr. H fairly quickly, too. The exam went fine, as it usually does. He asked some health-related questions, and some non-health questions. He knows my wife and I have travel plans, now that our kids are older. So I told him about our Rhine River cruise coming up for the spring. We talked about work, and the new stresses there. We talked about my kids and their various exciting happenings.

The physical exam was unremarkable. No swollen nodes. No obvious issues. He keeps offering to see me once a year instead of every 6 months, but I like seeing him more frequently, and he understands that. But he sees my name and his first reaction is to wonder if I'm having a problem and that's why I need to see him so often. 

The blood work results weren't back from the lab yet, so we couldn't talk about them.

He was pleased that I am keeping up with various vaccinations (Covid, flu, shingles. Might be time for a pneumonia shot, but my immune system seems to be holding up, so he's not anxious about it.)

I asked what he was excited about in the world of lymphoma. He's still very excited about bispecifics, and he talked about some of the successful research that's been happening lately. I like to have a plan for treatment, in case I need it. Of course, he said, we'd do a biopsy and use that to help determine a treatment plan. But if I do need treatment again, and it isn't too aggressive, he'd want to start with Rituxan, since it worked so well for me the first time, and then consider a bispecific if we needed to. It's good to have a plan.

And that was it. A stressful ride home, but I had a few moments of peace, anyway. Funny that it came in a Cancer Center.

Hopefully, I won't have any more doctors' appointments to write about any time soon. I'm sure I'll find something else to share with you.

Stay well. May your own visits to the oncologist bring you peace, too.

Skin Cancer Surgery

 As I wrote in a recent post, I was diagnosed for a second time with skin cancer. The first time was Basel Cell Carcinoma. This time was for Squamous Cell Carcinoma. (They are the most common types of skin cancer. If you want to know the difference, the Skin Cancer Foundation is a pretty good place to find information.)

Yesterday, I went in for the surgery to remove it. Everything went fine.

I've done this before, and not all that long ago, so I had a good idea about what was going to happen. I didn't have any questions for the nurse or the surgeon.

This is an in-the-office procedure, at least for my skin cancer. Like the first one, this one was on my scalp, though near the back of my head. I was told to wear a shirt that buttoned, so I wouldn't need to pull it over my head. I have a couple of old button-down shirts in my closet, so I picked one. But first I looked back at the picture I posted on the blog from the first skin surgery to make sure I wasn't wearing the same shirt this time. ("You're ridiculous," said my youngest child when I told them I that I did that). 

I had the same surgeon as the one who did the first surgery. He looked at his work from last time and said it looked great and that he had done a good job. (This was banter, not arrogance. I appreciate a doctor who kind of tests the waters and makes small jokes.)

I sat upright in a chair and the surgeon numbed my scalp. 

"How have you been?" he asked. 

 "Oh, I've been OK," I said. "Except, you know, some skin cancer."

He laughed. "Skin cancer isn't a joke," he said. "But the survival rate is very, very high, especially when it's taken care of early. So it's god that you're here."

He poked around my head a little.

"You have a very tight scalp," he told me. "There are two types of people in the world. I know that sentence can go in a lot of different directions, but in my line of work, there are two kinds of people in the world -- those with tight scalps and those with loose scalps."

I said I assumed he preferred loose scalps, since they were probably easier to work with.

"Absolutely!" he said. "Think of the difference between the scalp of a 95 years and a 35 year old. You, my friend, have the scalp of a 35 year old!"

Like I said, I appreciated some banter.

Then he started the procedure, and in about two minutes, he was done.

He did a procedure called Mohs Surgery, where thin slices of the skin are excised, and then examined under a microscope to see if there are cancer cells present. If there are, the process is repeated until no cancer cells are found. 

As he prepped the sample for the lab, he told me that this seemed like a very shallow tumor, since I caught it early. He didn't think a second round of excision would be necessary. And even better, I probably wouldn't need stitches to close the would. The lab results would be back in an hour.

So I spent an hour in the waiting room. If you've ever been in a dermatologist's office, you know that most of the patients are on the older side. This particular group today seemed to have trouble with their hearing, or maybe with their phones. But in the hour I was waiting, I heard full conversations between parents and their adult children, including some very personal details I probably shouldn't have heard. I also heard a variety of very loud ring tones. And for some reason, someone was doing a google search that their phone was reading out loud. "Searching for...How much cinnamon to add....." No idea what they were adding the cinnamon to. I hope it worked out for them.

After an hour, I was called back in to the exam room. Everything looked great. No further excision needed, and no stitches, either. The whole thing took less than 90 minutes.

When I wrote to you about this a couple of weeks ago, I promised some "handsome photos." But since this is on the back of my head, I can't show you my face and the bandages at the same time. So you get to see my handsome scalp instead. The good news is, as I was sitting on the floor trying to aim the phone at my scalp, my dog Katara decided it was a good time to come in for a hug. So you're not getting my handsome face, but you are getting a heart-warming moment anyway.

So the lesson with all of this is, be sure to keep up your regular check-ups, especially for any and all cancer screenings. Ask you oncologist which ones are important. And when you suspect there's an issue, get it checked out -- early detection is almost always better than later. (Though later is better than never.)

I told you all of that a couple of weeks ago, but it's worth repeating anyway.

Stay well, everyone.