New Approaches for R/R Follicular Lymphoma

It's been a busy week. Work has picked up again. That explains why I haven't written in almost a week. I've barely had time to think, let along write.

(But, as I've said for 12 years or so, I'm lucky to be healthy enough to work, and to have a job to work at. So this isn't a complaint.)

In the spirit of being busy, and of the kind of "wrap up the summer" feeling that I've been getting this week, as kids go back to school (staying safe, I very much hope), I'm going to link to a nice interview published on OncLive a couple of days ago.

It's called "Emerging Approaches Seek to Expand the Relapsed/Refractory Follicular Lymphoma Treatment Arsenal," and the person interviewed is Dr. Lori Leslie of the John Theurer Cancer Center in New Jersey. 

Dr. Leslie discusses some of the recent research on Relapsed/Refractory FL -- treatments that are used after a treatment has stopped working, or that didn't wok at all. It's a subject that I care about a lot, of course; like many of you, my next treatment will be one that has been approved for R/R FL patients, or is in a trial that group.

She mentions Bendamustine and CHOP, two traditional chemotherapies. They are usually combined with Rituxan, though they are also being combined with Obinutuzumab more and more these days (it's similar to Rituxan, but with some changes that should make it more effective and less likely to produce allergic reactions, for some patients).

Dr. Leslie also discusses Tazemetostat, recently approved for patients with EZH2 mutation, or for whom there are no others options available. 

She is also hopeful that CAR-T will become available for R/R FL patients (that's still in a phase 2 trial; I'm guessing we'll see results in a few months at the ASH conference). She hopes it will someday be effetcive and safe enough to become the "standard of care" -- the default option.

The interview touches on a few other topics -- watching and waiting, for example, and R-Squared.

It's a good summary of what's happening in the lymphoma world for R/R patients right now. An end-of-summer-summary. (Sorry if that didn't translate well.)

I hope all of you are staying safe and healthy, especially as kids start going back to school.

More soon, when things calm down a little bit.

 

ASCO Part 2: CAR-T News

A little more from the ASCO Virtual Education session. 

There was, of course, a session on CAR-T treatments at ASCO part 2 -- CAR T-Cell Therapy: Strategies to Expand Access.

I'm going to assume that, if you're reading the blog, you have heard of CAR-T. But maybe a quick reminder would be helpful, just in case. CAR-T stands for Chimeric Antigen Receptor T-cell therapy. Basically, T cells are a type of immune cell that help clear out any invaders in the body (like bacteria or viruses). Cancer cells, while they don't belong, are not attacked by the immune system because they are not "invaders" from outside. They are our own cells that have gone rogue. The system for finding outsiders just ignores them. CAR-T therapies take T cells from the body, change them in a way that lets them recognize cancer cells as invaders, and then puts them back into the body to find and clear out the cancer cells. Ideally, like any immune cell, they grow in numbers to deal with the cancer cells, and then remember the cancer cells so they can go back to work on them if the cancer returns.

Lots of patients have had success with CAR-T, though not all of them, and researchers continue to work on making CAR-T more effective and safer (which is important because CAR-T has the potential to create some very serious side effects). If you want to read more about CAR-T and Follicular Lymphoma, I recommend this site.

There are two CAR-T treatments that have been approved by the FDA, and about 600 clinical trials around the world that are testing CAR-T (newer versions, different diseases, etc.). One of the big issues with CAR-T, though, is the cost. Because each treatment is created specifically for one patient, using that patient's cells, the cost is very high -- potentially close to $500,000 per treatment. 

The ASCO session on CAR-T focused on issues of access -- how to get the treatment to patients who might be helped by it. ASCO put out a nice summary of the session in the daily newsletter they published during the conference. But basically, the issues include things like cost, of course. But there are others.

For example, side effects can be a major problem, one that is potentially life-threatening. As one presenter pointed out, some smaller clinics may be able to administer the CAR-T treatment, but they don't necessarily have the facility to deal with some of the side effects. She hoped that researchers would be able to make CAR-T treatments better in the near future, in ways that reduce the severity of side effects, making them more available to those clinics that can't handle those safety issues.

Another issue, in addition to cost, is the time that goes into creating the T cells. Right now, they are removed from the patient and taken to a lab, where the cells are changed and then left to grow in large enough numbers to be effective. This can take weeks, and some patients can get worse or die during that time. Improvements to the process, to speed things up, may come in the near future, and may help accessibility.

But cost seems to be the biggest barrier. In the United States, this means creating a better system for private insurance and Medicare (the government-run healthcare system for older patients) to reimburse the cost of the treatment.

The good news is that all of the speakers at the session seemed hopeful that the problems they pointed out were solvable, and that making people aware of the problems was a good first step.

This is especially important for us as Follicular Lymphoma patients. CAR-T treatments that are currently available are approved for aggressive blood cancers, including Transformed Follicular Lymphoma. But a few weeks ago, early results from a phase 2 clinical trial of CAR-T for Relapsed and Refractory FL patients showed some good results. (These are FL patients whose last treatment stopped working, or didn't work at all. They aren't necessarily patients with Transformed or aggressive Follicular Lymphoma, a much larger group of patients.) Earlier this summer, a different CAR-T treatment also showed good results for the same group of patients.

Ideally, as CAR-T trials move along, and eventually get approved for more FL patients, the accessibility issues with CAR-T will also approve, so the people the treatment is meant for will actually be able to afford it, be treated with it, and do so safely.

CAR-T is one of those treatments that get lymphoma experts very excited. Here's hoping that all of their wishes come true in the next few years.

Venetoclax, Rituxan, and Bendamustine in Follicular Lymphoma

For this post, I'm doing a couple of things. I want to give another quick report on an ASCO Part 2 session, and I also want to report on some Follicular Lymphoma research. They are connected.

The ASCO part 2 session is called "Rise of the Combinations in Targeted Therapies." This session didn't have anything to do with Follicular Lymphoma, but it did talk about a general topic that is important to FL: combination therapies. This is the practice of using several different treatments instead of just one. Ideally, combinations work better than single agents. An example might be Rituxan in Follicular Lymphoma. As good as Rituxan might be on its own for some patients (like me), when it is combined with chemo like CHOP, it makes the chemo work even better. 2 + 2 = 5. 

Because of this, it seems like every new treatment goes through a trial on its own, but also goes through a bunch of combination trials. That not all of them work, but sometimes the combinations do a great job. (Like R-squared.)

The ASCO session was, frankly, a Cancer Nerd's dream. It got very heavily into the reasons why some combinations work and some don't. I won't get into the specifics because 1) none of it had to do with Follicular Lymphoma, and 2) I didn't understand a bunch of it. But even not understanding some of the details, the point was clear. Newer "targeted" treatments (as the title says) focus on pathways. For a cancer cell to grow and live, it needs to follow a certain path, with genes controlling enzymes that turn things off and on. By identifying the pathway, researchers can develop treatments that shut things off that are supposed to be on, and shut things on that are supposed to be off. It disrupts the pathway and keeps the cancer cell from growing and living.

The problem is, cancer cells are smart, and when a path is shut off, they can find a way around it. That's why combinations can work. If the new pathway is identified, then a second treatment can be given that shuts off (or on) the new set of switches that the cancer cell is relying on. A successful combination can shut off all those paths and keep the cancer cell from growing.

There's more to it than that, as I said, but that's essentially how it works. Imagine a city where construction projects keep closing off streets that you need to go down. Eventually, you just park your car and walk. (The car is cancer, in case you didn't follow that.)

One problem with combinations, though, is the potential side effects. While each individual treatment cuts off a pathway, it also does some damage, and with more than one treatment, that damage can add up. There's always a balance. That's why clinical trials test both how well a treatment works, and how safe it is. 

Which brings us to the new research on Follicular Lymphoma. It's an article from the journal Blood called "Venetoclax-Rituximab ± Bendamustine vs Bendamustine-Rituximab in Relapsed/Refractory Follicular Lymphoma: CONTRALTO." It's a report on a clinical trial called CONTRALTO that compares three combinations: Bendamustine + Rituxan (a very common chemotherapy combo), Venetoclax + Rituxan, and Venetoclax + Rituxan + Bendamustine.

Venetoclax is an inhibitor. It targets a protein called BCL-2, or B Cell Lymphoma-2. This protein prevents some cells from dying, and in some blood cancers, it can make some chemotherapies less effective. It is already used in Chronic Lymphocytic Leukemia, another slow-growing blood cancer. Seems like a good candidate for FL.

The results were mixed. Patients who received Venetoclax + Rituxan (there were 52 of them) had a Complete Response Rate of 17%. Patients in the Venetoclax + BR group (51 of them) had a 75% CR. Patients in the BR group (again, 51 of them) had a 69% CR rate.

However, while the treatment was more effective, the toxicity was much higher for the V+BR groups than the other two groups. almost 94% of patients had fairly severe side effects (versus 52% in the V + R group and 60% in the B + R group). More patients had to stop taking the V + BR group because of side effects than in the other two groups. 

The researchers think that playing with the BR dosing might help reduce side effects. They were encouraged, though, by the Venetoclax + Rituxan combo, and think it's worth studying more.

I thought this was a pretty timely example of both the positives and negatives of combination therapies. The triple combo was much more effect than the double combos, but also less safe.

And it's a good illustration of why it's so complicated to develop new treatments. That V + B + R combo seems great in theory: take an effective immunochemotherapy combination and add something that might make the chemo more effective. Alas, triple the treatments meant triple the potential side effects. 

My guess is that combos aren't going away any time soon. And as more clinical trials explore those combos, researchers will know more about how they work. So even failures can bring something worthwhile.

 

ASCO Part 2: CBD and Cancer

I'm still looking at (and reporting on) some of the sessions at the 2020 ASCO Virtual Education Program, help earlier this month. These sessions don't present the new scientific research about cancer. Instead, they offer continuing education for oncologists on ways to be better, more informed doctors.

The latest session I have looked at is called Complimentary Alternative Medicine. 

As a quick reminder, let me explain the difference between Alternative Medicine and Complimentary Medicine, because they are different in important ways. In cancer, Alternative Medicine suggests treatments that are different from standard cancer treatments like chemotherapy, radiation, and immunotherapy. They offer alternatives to these treatments. From what I read in online groups, they are fairly popular with a lot of cancer patients. That's usually because people want to avid what they see as the negative side effects of things like chemo, though sometimes it's (sadly) because they can't afford things like chemo. The problem with Alternatives is that they are not proven to work. That might be harmless in some situations, but a study from a few years ago found that patients who rely on Alternative Medicine have a lower survival rate that those who take standard treatments.

That's complicated for Follicular Lymphoma patients. Some people may try Alternative treatments, and think they are working. But because FL can be a slow-growing disease, it's not the Alternative treatment that's doing the job; it's just the slow-growing nature of the disease. So if the FL becomes more aggressive, and the patient relies on the Alternative treatment that they think has been working, that could lead to unnecessary trouble, if they avoid standard treatment.

So that's Alternative Medicine. Complimentary Medicine (also known as Integrative Medicine) is different. Instead of replacing standard treatments, it compliments them, working with them to make them better (or to give the patient a better experience with them). Complimentary Medicine might have patients take standard chemotherapy, but then suggest something like yoga or tai chi to help with side effects. Or maybe marijuana to help with nausea. The chemo is still there. But the Complimentary treatment helps make the experience a little less awful.

So this session looks at Complimentary Medicine, and one of the presentations was "Cannibidiol Use in Oncology" by Dr. Tina Rizack.

Cannibidiol is also known as CBD, and, as Dr. Rizack points out, it has become fairly popular in recent years. A lot of the presentation gave some background about what CBD is and how it works, which was interesting (and might be especially interesting to the doctors that the presentation was meant for). I'm going to skip some of that background and get to the highlights.

CBD is a component of marijuana. Unlike THC, another component, CBD does not contain the compounds that make someone high. But it may have some other very positive effects.

I'm going to emphasize that word again: CBD may have some positive effects. I know from speaking with people who use it (I have never tried it myself) that it is very effective for some, but not for others. There are lots of reasons for the differences: the CBD content of a product does not always match up with what it says on the label (studies have shown there can be anywhere from 30% to 69% difference, so you might only be getting 1/3 of what you think you're getting). Quality can be a major issue, with some CBD products having impurities that interfere with effectiveness. And some people may just not get an effect, as with any medicine (Tylenol doesn't do a thing for me when I have a headache, but it works great for one of my kids). 

So what is it good for? Well, a lot of what we know comes from reports from individuals, rather than from larger studies, though there are some large studies out there. 

Right now, the only thing we know for sure, based on rigorous research, is that CBD helps children with certain rare types of epilepsy. That's the only large study that has led to an FDA approval. There have been some smaller studies that suggest a possible benefit, but none that have been tested on a large scale, such as a phase 3 trial.

Some of the uses that are related to cancer include pain reduction. Some standard cancer treatments, as well as some types of cancer, can cause pain that might be reduced with CBD. There is a study going on now in Australia that looks at palliative care in cancer patients, and early results seem to show that CBD may reduce pain. 

(I'm sorry that I don't have links to these specific studies. I really don't like mentioning research without giving you a way to look for yourself, which is really important. But since these are video presentations, they don't always give a lot of detail about where the information came from. But given that it's an ASCO presentation, by doctors for doctors, I trust the source.)

There is also some research that CBD can reduce the nausea that some treatments (like some chemotherapies) can cause. One found that CBD (and THC) improved the standard anti-nausea drugs that were given to cancer patients. But that was 10 years ago, and there hasn't been a study since that compared CBD to some newer, more effective anti-nausea treatments that are usually given today.

Other studies have shown that CBD helped patients with Graft-versus-Host disease, which happens when a patient's body rejects a transplant (including Stem Cell transplants that are common with some blood cancers). 

There is also some suggestion that CBD might help some people sleep better, maybe because it reduces pain and anxiety. And there is at least one study that shows, at certain doses, that CBD can reduce anxiety.

(Interestingly, the presentation said that people of different ages take CBD for different reasons. Younger people tend to take it to reduce anxiety, while older folks take it to reduce pain. That fits pretty well with the people that I know who take it.)

There is still a lot that needs to be tested with CBD. Dr. Rizack counted 247 clinical trials related to CBD, with 47 still recruiting. 9 of them were related to pain, and 2 to cancer (one for nausea and one for Graft-versus-host), with 1 more related to anxiety.

One final point -- there is NO EVIDENCE that CBD cures cancer, or that THC or any other compound from marijuana cures cancer (though an ASCO survey last year found that 39% of Americans think that marijuana does cure cancer). Maybe we'll have evidence for that some day, but for now, legal restrictions on research have made it hard.

So here;s the bottom line:

CBD may help some people with pain, anxiety, and nausea. Or it might not. The good news is that it's not addictive, and almost impossible to overdose on. The bad news is, it's easy to find CBD that is not effective, or contaminated, or at a lower dose than the product label says. CBD can also interfere with some medications, including some antibiotics and certain types of chemotherapy.

My advice, if you're looking for my advice, is to ask your oncologist before you try it. There's a chance he or she won't know much about it, so if there is an Integrative Medicine department at your cancer center (or at a nearby research hospital), ask them for advice. They may know of a reputable source, and have some suggestions for dosing.

Like any Complimentary Medicine, CBD might be a help, and the evidence from the ASCO presentation seems to suggest that taking it won't do much harm. But better to check with a doctor, the way you would before taking any kid of treatment, whether it's Standard or Complimentary.

 

ASCO Part 2: How Diet Affects Cancer

I'm reporting again on the ASCO Conference. While the Scientific Program for the conference happened in June, the Education Program happened this past weekend. These sessions are more immediate, in a way -- the scientific stuff is fascinating, but not might not result in treatments for years (or maybe never). The Education Program has information for oncologists that can make them better doctors right away. It's all about information they can use to better understand and work with patients.

Of course, I'm not a doctor. But I can pass along some interesting information directly to you, skipping over the need to actually talk to your oncologist. (That's a joke, of course. You should always talk to your oncologist about stuff you read here. Doctors know more than I do. Seriously.)

So here's some stuff to talk to your doctor about.

The ASCO session called "Hungry for Data: The Evidence of Diet and Cancer in 2020" was supposed to feature three presentations, but one of them isn't showing up. It's the presentation on fasting and keto diets, which I'm sure many people would like to know more about. I'm hoping the presentation will be posted soon, though it's been four days now, so my hopes are diminishing. If I can access some time, I'll be sure to write about it.

Still, the other two presentations were very interesting.

The first was on diet and cancer prevention. My first reaction to this was, "I'm not going to bother with this one. It's a little late for cancer prevention at this point." But, really, the advice is very good for overall health, not just cancer prevention, and we could all use reminders about staying healthy. The presentation was given by Dr. Cynthia Thomson, and she focused on the the American Cancer Society's updated Guidance on Diet, Physical Activity, and Cancer Prevention.  The ACS last issued guidelines in 2012, and new research has changed them slightly. Here they are -- things you can do to help lower your cancer risk by about 18%:

• Keep your body weight at a healthy level
• Engage in physical activity (150-300 minutes of moderate activity each week, or 75-150 minutes of vigorous activity)
• Establish healthy eating patterns -- lots of fruit and vegetables and whole grains, with limited sugar and refined grains
• Do not drink alcohol
  

That "no alcohol" guideline is new -- it used to be no more than 1 drink per day for women and 2 for men. But new evidence suggests No Alcohol will better prevent cancer. I have to admit that I'm going to violate this one. I don't drink a lot, maybe one or two a week, but I enjoy Scotch too much to give it up completely. (Back me up on this, PopplePot.)

And I'm good about exercise. I've always gone to the gym at least a couple of times a week, though I've given that up for Covid reasons. But my wife and I have been walking 2 miles every morning since we've been stuck at home (thanks to William for the inspiration). 

Diet? I could do better. The only reason I don't drink more Scotch is that I like ice cream so much, and I at least have enough self control to chose one or the other every night.

But, really, even adding one more serving of fruit a day seems like a reasonable goal, doesn't it?

We may not have been able to prevent our Follicular Lymphoma, but we can do things to keep ourselves healthy while we have it, and we can encourage our loved ones to be healthy, too.

The second presentation was by Dr. Jennifer Wargon, and focused on the ways diet could affect the microbiome, especially during treatment. 

There has been a lot of research in the last few years on microbiomes, especially gut microbiomes. If you're not familiar with it, we have billions of bacteria living in our bodies. Some can hurt us, but lots can help us. When the good ones are killed off, our bodies get thrown out of balance (which is why some antibiotics can cause digestive problems -- good bacteria are killed off with the bad ones). We can do things that can keep our microbiome healthy (which is why some doctors tell you to take a probiotic when they prescribe you an antibiotic). One of those things can be to change your diet.

Now, I am deliberately not going to get into much detail about this presentation, because while I found it fascinating, the research is also in its early stages, and I don't want to give the impression that if you eat XXX, all of your problems will be solved. So here is the general outline of what the presentation said.

• There is some evidence that bacteria can play a role in cancer treatment. Some research found that certain bacteria were present in pancreatic cancer tumors. When antibiotics were given along with chemo, some patients had better outcomes. This suggests the bacteria in the tumor were making the chemo less effective.
• Other research found that a more diverse microbiome (having lots of different types of bacteria in the body) were related to longer survival among cancer patients. There is some suggestion that the microbiome could be a biomarker (in other words, if tests show there is a variety of bacteria in the body, that could be a sign that certain treatments might be more effective than others). 
• Microbiome composition could also be important. That is, specific types of bacteria might be helpful with certain treatments. A study with mice showed that this was true. More importantly, it was possible to change the microbiome to make the treatment more effective in the mice.
• The microbiome can be changed in several ways -- through fecal transplants, through probiotics (taking pills that add good bacteria to the body), and by prebiotics (eating foods that help create an environment in the body that helps god bacteria live). 
• None of these is as easy at it seems. Fecal transplants have had great results, but have also caused some deaths. Changes to diet require the patient to actually make those changes, but even then, our individual bodies are so different, it's hard to measure how much someone's diet has actually helped them.
  

It's early research, but fascinating research. And while we're still learning how, exactly, the microbiome has an effect on us as cancer patients (before, during, and after treatment), it's clear that the microbiome has an effect on our overall health.

Again, I'm not a doctor or a nutritionist, but it seems like some sensible diet guidelines could be helpful here, especially getting more fiber into our diets. How to do that? Well, look a few paragraphs above -- more fruits, more vegetables, more whole grains. 

The presentations in this session don't address Follicular Lymphoma specifically (I have no idea how the microbiome affects blood cancers, if at all). But there's no harm -- and possibly a lot of help -- in making some changes to our diets, if we haven't already done so. 

Stay healthy, everyone.

ASCO Part 2: Non-Chemo Treatments for Follicular Lymphoma.

This weekend, ASCO continues its virtual conference, with the 2020 ASCO Virtual Education Program. I'm calling this ASCO Part 2.

(I really wanted to call it ASCO Part 2: Electric Bugaloo, but I don't know how many of you would get that reference, so never mind.)

As I'm sure you remember, the ASCO conference (from the American Society of Clinical Oncology) takes place every year in early June. This year, the conference was split in two, since it is al taking place online -- the Scientific Program happened in late May, and focused on clinical trial results and other scientific research. ASCO was very generous this year and allowed patient advocates to "attend" for free. I was able to look in on sessions for the first time (since I can't ever afford to attend the conference in person).

And since I was registered for the Scientific Program, I am able to the Virtual education Program, which takes place this weekend. While the Scientific Program focuses more on giving results of research, the Education Program is more about how oncologists can use all of that research to be better doctors. So while it has sessions that focus on things like how Bispecifics might change the way Non-Hodgkin's Lymphoma patients are treated, it also has sessions on the specific cultural needs of cancer patients who serve in the military, or how COVID-19 is changing cancer care practices, or how to better care for LGBTQ cancer patients and survivors, or how financial toxicity can affect patient choices.

So while the sessions are focused on helping oncologists become better doctors, I can already see a bunch of sessions that look fascinating to me, even if they don't affect me directly. I'll try to share the ones that you might like, too, over the next few weeks.

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

I'll start out with the only presentation that specifically addresses Follicular Lymphoma. (There are only 90 sessions for the whole program, and a bunch of those are speeches or award presentations, so it's no surprise that there is only one for FL.)

(Also, since this conference isn't presenting the results of new research, this presentation is more of a summary of previous research. Remember, the idea here is to educate oncologists, probably non-specialists who need a summary of research.)

The presentation is called "Chemotherapy-Free Approaches in Follicular Lymphoma and Mantle Cell Lymphoma." I'm including a link, though I don't know if you can access it without being registered for the conference.

The idea of the presentation is probably familiar to many of you (being patients who like to be well-informed). Traditionally, lymphomas have been treated with chemotherapy. And chemo still plays a big role in our treatment choices, with Bendamustine, CHOP, and CVP being very common. 

But more and more, researchers are focusing on non-chemotherapy treatments. Since traditional chemo kills some healthy cells as well as cancer cells, leading to a range of side effects, there is a preference for many newer treatments, which do a better job of targeting cancer cells and leaving healthy cells alone. There are still some side effects, but they are different from those that we might experience with chemotherapy. (Less hair loss, more nerve damage, for example.) We are likely at "maximum impact" from chemo -- what we have now is as good as it's going to get. Non-chemo treatments are the future.

And we do have several options.

For patients who are "treatment naive" (that is, who will be getting their first treatment), the options include Rituxin (which I received 10 years ago). But there are several others with a lot of promise, including R-Squared (Rituxan + Revlimid/Lenalidomide). Just a few weeks ago, updated research on R-Squared showed that it is effective for untreated FL patients. Other research on Lenalidomide + Obinutuzumab (a cousin of Rituxan) also shows promise.

There are a few more options for patients who have Relapsed/Refractory disease (they already had treatment, and it stopped working, or didn't work at all).  R-Squared is the one that seems to excite most oncologists. It's already been approved by the FDA. There's also the trio of inhibitors (Idelalisib, Copanlisib, and Duvelisib). Another, Umbralisib, is undergoing FDA review. And ME-401 is another inhibitor under review. While the inhibitors have had some success as individual agents, they tend to do better when they are combined with other things. Of course, that also means the chances are higher for more side effects. 

And finally, there's Tazemetostat, which was approved for Refractory/Relapsed FL patients with EZH2 mutations.  

The take-away from the session is that there are now chemo-free options for all Follicular Lymphoma patients, no matter where they are in their treatment life. 

One thing I noticed as I was creating the links is just how many of them have been in the news in the last few months. We are definitely in the middle of a real change in the way FL gets treated.

I can see an important issue for oncologists, though maybe it matters less in reality -- for many (most?) cancer patients, any treatment they get is "chemo." I don't know if it matters to them that Rituxan isn't technically chemotherapy, but maybe knowing the difference might also ease their anxiety a bit, if they see "chemo" as something scary. Understanding the distinction might also lead more patients to consider clinical trials.

As I said, I'll comment on some more of these ASCO 2 sessions in the next few weeks (I'm looking at a presentation on diet and another on CBD oil). There are some other Follicualr Lymphoma news items from the last week that could use commentary, too.

Stay tuned.

No Oncologist Appointment Today

I had an oncologist appointment scheduled for today. It didn't happen. Very frustrating.

I like being able to share good news from appointments. It's going to have to wait a while.

Last week, I got a reminder phone call that my appointment was scheduled for this morning. Blood work at 10:00, meeting with Dr. H at 10:30. (That call was a problem in itself. I let it go to voicemail because it came up as "Denver, CO -- Scam Likely." The hospital is Connecticut, approximately 1850 miles away. I assume it's some kind of automated calling service, but they can't set it up so the caller is the name of the doctor?)

So I dutifully went to the hospital this morning. I parked in the hospital garage, and as I walked toward the entrance, the ear holder of my cloth mask snapped and broke. Thankfully, I keep some disposable masks in the car, for just this situation. But that broken mask was kind of a warning.

At the hospital entrance, there is a station set up to make sure no one with Covid enters. A nurse takes your temperature and asks questions about travel and symptoms, and if you're OK, they let you go to the next station. There, someone looks you up to make sure you have an appointment. No visitors allowed without special permission.

It was a bit of a wait there. As I stood in line, 6 feet apart from everyone else, I saw a woman in a wheelchair, and I started to think about how vulnerable people are right now. The trip to the hospital is a little risky these days. I was surprised that they actually went through with the appointment, to be honest. I know lots of Follicular Lymphoma patients are holding off on appointments if they are not actively in treatment. But I also live someplace where Covid is somewhat under control. People are good about wearing masks and keeping their distance, and cases have been low for a few weeks.

(Which isn't to say I think it's gone away. I'm still very careful to avoid any situation that makes me uncomfortable.)

When I got to the station where my appointment was verified, the woman there said I did not have an appointment today. I showed her the email reminder I got 4 days ago, but she told me the day and time of my appointment -- three weeks from now, late afternoon. I knew that didn't sound right. I don't make late afternoon appointments.

I was told I needed to leave if I didn't have an appointment, so of course I did. I'm not going to hang around and argue.

When I got home, I finally got in touch with the doctor's office. They confirmed the new appointment -- three weeks from now -- and said they had left a voicemail.

I never got a voicemail. And it's a really bad idea, in my opinion, for a doctor's office to just randomly assign a new day and time without confirming it with the patient.  So they assigned me a new day and time, left a message (apparently at someone else's number) and then assumed it was OK since they didn't hear back.

That just seems backwards. (I hate getting a "regrets only" party invitation for the same reason.)

So I had hoped to give you 1) an account of what it was like to be at a hospital during the pandemic, and 2) good news about my health. They'll both have to wait.

I hope your own appointments are going well, and you are able to keep up with your doctors during this challenging time.

Is Cancer a Chronic Condition?

CURE magazine posted an interesting piece a few days ago. It was written by a cancer patient (they have lots of nice stories written by cancer patients), and it's called "Calling Cancer a 'Chronic Condition' is Damaging to Patient Care."


The title caught my eye right away. As I'm sure some of you know, Follicular Lymphoma is often thought of as a "chronic condition." I sometimes refer to it that way. It's an easy way of explaining how a cancer (which is usually thought of as "acute" -- the opposite of chronic) can grow slowly and not need treatment immediately.

But the writer of the piece thinks calling cancer "chronic" is not a good thing.

She has a point. Doctors and researchers point to the fact that cancer patients are able to live longer lives. And there's the problem, she says -- they aren't saying "more people are being cured," they're saying "more people are living longer." But "longer" could be just a matter of months.

And the real problem, she says, is that this has led doctors to redefine what it means to be successful. We get used to small victories, and forget that a cure is the real goal.

The writer is not a Follicular Lymphoma patient (she has Inflammatory Breast Cancer), but the issue is familiar to us. That debate has been going on in the FL community for as long as I can remember -- should we be going for a cure? or should we be focused on treatments that let us live a long time with a high Quality of Life? The issue came up just a few months ago as a group of experts discussed FL. As more treatments like inhibitors are created, the idea of taking a pill every day for the rest of our lives doesn't seem so bad. Many Follicular Lymphoma patients are told that we are likely to "die with FL rather than die from it."

Of course, the best answer to all of these questions is, let's do both. Let's create treatments that continue to give us high Quality of Life, with few side effects, while we wait for a cure. Of course, the difficulty there is, the more money and time put into treatments that assume FL is a chronic condition, the less there is for trying to cure it.

As I've said before (like in that post linked above, about the panel of experts), I'm not sure at this point that I could even accept that a new treatment really would be a cure. I've been living with this for so long (12 and a half years) that it's going to take some really long-term data from a really large group of patients to convince me that this thing is actually cured. But that would be my preference, if I had to choose between the two approaches.

So I'm curious -- how do you think of your Follicular Lymphoma? Does it help you to think about it as a chronic condition, something you'll probably live with forever, like diabetes? Does thinking that way make it easier on you, emotionally? Or does that just add to the anxiety that most of us seem to live with anyway?

Whatever the case, I hope that the many new treatments that are becoming available give you something to look forward to, and give you some comfort. Whether they are meant to cure us, or just sustain us, options are good.