Oncologist Appointment Today

I know I said I was going to talk more about some ASH abstracts, and I promise that I will. 

But I had my six month oncologist appointment this morning. Everything still looks good.

I don't really have much to report. It was, as usual, difficult to get there. I see a lymphoma specialist now, instead of a general oncologist, because I wanted someone who could answer my (sometimes very specific) questions. But that means I have to go into the cancer center in city near where I live, and my appointments are usually right around the time the city gets busy. And to make it worse, the parking garage is under construction, so I almost got into three accidents while I was trying to park. 

That's not really anything that you want to hear, I know. No one likes to hear someone complain about something like traffic.

But what you do understand is that bad feeling that bubbles up when an oncologist appointment comes up. I was diagnosed almost 15 years ago, and I've thought about cancer every day since then. I don't have the fear of it that I once did. But driving to the hospital for an appointment, even having done it dozens of times, I still get that little bit of stress. And I can see it in myself -- I know when I'm stressed, I get annoyed very easily. So it's not about traffic and construction. It's about those feelings that we all have, whether we were diagnosed 15 years ago or 15 days ago.

But I have to say that the hospital I go to has gotten better over the years. By that I mean it's gotten more personal. For a while, it was all very business-y, and I felt like I was just being moved out as quickly as possible. But it's better now. The staff seem genuinely concerned about patients. I was waiting for my blood draw, and the receptionist in that office told me that if the music was too loud, just let her know and she'd turn it down. (Of course, it was Mariah Carey's "All I Want for Christmas Is You," so I told her it was fine for now, but if it happened a couple of weeks from now when I would be sick if it, I'd ask her to lower the volume.)

My actual appointment with the oncologist was fine -- it always is. He likes that I'm an "easy patient," meaning I don't force him to make difficult treatment decisions. He's still very impressed that I have gotten almost 13 years of Progression Free Survival out of 6 rounds of Rituxan. My physical exam was fine, and my blood work looks good. 

Other than that, we talked about my kids and what they are up to, my travel plans for next year, my dermatologist appointment, my colonoscopy, and a few other unimportant things, the kind of things that people talk about when they only see each other every six months. 

It was a good appointment.

And more importantly, it was a reminder that I'm still a cancer patient, even if I haven't had treatment for a while. That's a good thing. I don't think I want to forget how that feels. As long as I'm a cancer advocate, I want to keep that connection. It's all much too big a part of my life to just let go. 

ASH commentary is coming soon.

Giving Thanks

I've been looking at the ASH abstracts, and started a few posts on interesting topics, but I'm still working on them. I thought I'd pause today for Thanksgiving.

I know that not everyone reading is from the U.S., so: Today is Thanksgiving, our annual holiday where we pause and remember good things in our lives and give thanks for them. (There's also lots of eating, since this holiday is supposed to have started as a kind of harvest festival.)

I think cancer patients (especially those of us with Follicular Lymphoma) have a hard time with Thanksgiving. On the one hand, we're alive, and that's certainly something to be thankful for. On the other hand, we're often living with difficult things, whether the physical problems from the FL itself, or side effects from treatment, or the emotional burden of watching and waiting, or just worrying about a successfully-treated cancer that might come back. Nothing is easy with this cancer.

But, hopefully, there is more to be thankful for than not. 

This is my 14th Thanksgiving as a cancer patient. As I sometimes do, I looked back at what I wrote in this blog about what I was thankful for that first year (2008). I'll tell you something that I find kind of 'amazing -- thinking about it over the last few days, my list this year is pretty much the same list, 14 years later.

I'm still thankful for all of the wonderful doctors I've worked with. I counted 11 of them back then, based on the business cards in my wallet. I've added a few since then, as I deal with an aging body and more that has gone wrong with it. They're all great. All things considered, I'm a reasonably healthy 55 year old with an incurable cancer who can still more or less do what I want to do. I know not everyone can say that. I give doctors at least a little bit of credit for that.

And I'm very thankful still for FL researchers. I certainly write a lot of about their work. What's different now, 14 years later, is that I've actually gotten to meet some of them and work with them. That's been very cool. They're passionate about what they do, and they do it very well. 

I'm still thankful for my job, which gives me great security in many ways. I don't talk much here about the work that I get paid for. I'm a teacher, and I teach writing. It's a very fulfilling job. I like my students and I like my colleagues. I've been doing in for over 30 years, and it's still feels like something new all the time. There's a lot to be thankful for there. 

OK, I guess I'm still thankful for music, though I gave up my music "career" long ago. But I do still get to listen to my kids play. My oldest plays saxophone in a band, and we may get to see them play Saturday night (if we can stay up that late). My middle child has taught himself to play banjo. As I said 14 years ago, my wife and I always wanted a house full of music. We still have one.

I said back in 2008 that I'm thankful for my support group. I rely on them less now than I did then, but I will say that I am thankful for other FL patients who have shared their stories with me, including many of you reading this. Even 14 years after diagnosis, it's always comforting to hear from someone who has experienced the same thing as you. Cancer can be lonely in many ways, and talking to some of you can make it feel less lonely.

I said back then that I was thankful for my parents, and that's true. They were so wonderfully supportive. "Were," unfortunately. Both have passed on, and I lost both to cancer. It was another of those strange things, to be able to share cancer stories with your parents -- something to be thankful for, and not thankful for. I was lucky enough to have had a good relationship with both of them for my entire life, even during those years when most people don't have great relationships with them. I miss them, especially at this time of year.

And I'm still thankful for my brother. I said back then that my cancer had brought us closer together, and losing our parents brought us a little closer, too. I'm very thankful of all of the work he has done to raise money for cancer research.

And I'm still thankful for my kids, and not just because of the music. They are all technically adults now, though they're still just kids to me. But they've grown into wonderful people, who care about others and want to make the world a better place. I can't ask for more than that. My oldest is here for the holiday from his job about 300 miles away, and my middle one just took a job in the state that we live in, so we're seeing him more often. And our youngest can't be with us for Thanksgiving, since they're literally halfway around the world, studying in Japan. It's a wonderful opportunity that I am very thankful they were able to experience. I'm a happy dad, and 14 years ago, I'm wasn't sure I'd be here to see it all.

And I'm mostly thankful for my wife, Isabel. I like what I said so long ago, so I'm going to repeat it here:

And I'm mostly thankful for Isabel. She had no idea what she was getting into when she promised that whole "sickness and health" thing -- no one ever does. She 's been so strong, so positive, so supportive through all of this. I heard someone say once that in a good marriage, you take turns being crazy. We've managed to do that, balancing each other out, being positive when the other is feeling bad, energetic when the other is tired, sane when the other is crazy. It's a great comfort to know when I'm down, she'll be up. Love you.

We'll be celebrating our 30th anniversary in a less than 2 months. I couldn't be more thankful for anything in my life.

Happy Thanksgiving, everyone. 

 

More on Watching and Waiting

I got some really interesting comments on my last post about watching and waiting. I started to respond to them in the comments, but I thought it might be easier to respond to them here in a new post.

Just as a reminder: I was diagnosed with Follicular Lymphoma in January 2008, stage 3, grade 1 and 2. Various tests at the time suggested I could watch and wait, and after a month, I had another scan, which confirmed that things weren't growing very quickly. My oncologist recommended I watch and wait. His reasoning was, at least back then, there were not a lot of treatments available. Since this disease is considered incurable, the thinking back then was that it was better to hold off on treatment if you could, since you would probably need a bunch of them, since the disease would keep coming back. 

None of that happened to me. I watched and waited for two years to the day, starting Rituxan on the two year anniversary of my diagnosis. I haven't needed treatment since. I think we know more about FL now, and there isn't the assumption anymore that we'll all be on that same path -- needing multiple treatments, with the time between treatments getting shorter, and the disease getting more aggressive each time it comes back. That does happen with some FL patients, but with more and better treatment options, many of us have more time between treatments, and there isn't a definite pattern of having the disease become more aggressive and resistant to treatment over time. 

Even though I went through watching and waiting based on some old assumptions, I still don't regret the choice. It worked for me, and I' do it again, even with all of this new knowledge.

Now, on to the comments. 

A couple of readers shared that they are now watching and waiting -- one for 2 months, and one for 11 years. It's fascinating to me that there can be such different experiences with the same disease. 

One of those readers (they both posted anonymously, which is fine, but it means I can't address them by name) said "Thank you for this. I was diagnosed with 'Follicular Lymphoma' 2 months ago & am in the Watch & Wait phase. Will show this study to my oncologist & possibly start maintenance therapy. Honestly, I have no desire to undergo any therapy, so I was okay with Watch & Wait. But as it stands, I would get a greater benefit from starting retuximab & maintenance therapy sooner."

Let me remind everyone first that I am not a doctor, so my medical opinion means about as much as an overly friendly guy sitting on a bar stool next to you. I do think that studies like this provide data that can help us make decisions, but it's also important to remember that when a study discusses statistics, they are always the median of a group -- in other words, the exact middle, so exactly half of the people in the study did more or better (of whatever is being studied) than the median, and the other half did less or worse. There's never any guarantee that you'll get the same result (in fact, "median" means the chances are 50/50 that you'll get the same result). Statistics aren't destiny. If you really have no desire to start therapy, and there's no physical reason to, then watching and waiting some more is still an option. I think it's smart to talk to the oncologist about it. Ask lots of questions and make sure you're satisfied with the answers. And let us know what you decide. 

And since you're just two months into this life, I'll say to you what so many said to me almost 15 years ago: I'm sorry you had to hear those words on the day you were diagnosed, but I'm glad you found us. Good luck with the chat with the doctor.

The other (11 year) watch-and-waiter pointed out that Covid has affected their choice, and they are happy to stay on watch and wait until things have calmed down some more. This makes sense -- treatments for FL will all lower our immunity to some extent, and lower immunity is not what we want during a viral pandemic. So that's probably a good choice -- if it's been working for that long, stay with it until there's reason to stop.

(That's the kind of wisdom that 11 years of watching and waiting will bring. It takes some real self-knowledge to live that long while knowing you have cancer. That's awesome.)

Another anonymous reader asked, "Is there actually a reason why maintenance therapy with rituximab is stopped after 2 years? What would be an argument against maintaining a maintenance therapy as long as the patient tolerates it and possibly keeps the tumor burden within limits?"

Excellent question, and there is a good answer. Simply put, Maintenance lowers immunity and increases the chances of getting a serious infection. There was a report at ASH about this in 2018. Researchers split FL patients into two groups after they had four rounds of Rituxan and had a response from it. One group had Rituxan Maintenance for 6 months, and the other had it for 5 years, They found no major differences between the two groups  in their Event-Free Survival, Progression-Free Survival, or Overall Survival. In other words, more Rituxan didn't make them live longer or keep their disease away any longer. This was true even after 10 years of observing the two groups. But there was a difference in the problems it caused. Rituxan goes after cells with the CD20 protein on their surface, meaning the B Cells that turn cancerous in FL. But it also goes after healthy B Cells, not just the cancerous ones. And B Cells are an immune cell. So 5 years of wiping out healthy immune cells means greater risk of infections, but with no benefit. Two years seems to be the right balance between effectiveness and safety. 

Finally, reader Liz did what I requested, and found the original research that the ASH study was referring to. I had said that this year's ASH abstract mentioned Quality of Life but didn't get into any detail about how the measured Q of L. Liz found the details for us. You can find a link in Liz's comment from my last post, in case you want to read the details. But basically, as Liz points out, the study shows that FL patients undergoing maintenance were less worried than those watching and waiting. 

However, as Liz says, "I think its relevant to note that baseline scores were generally high but equally important there was no significant deterioration in physical or functional wellbeing scores within the treatment arms. I think having looked through all this, that it's so important to have informed conversations with our doctors about our individual treatment priorities and concerns. Watch and wait is still an appropriate choice for many but moving to treatment earlier does have potential benefits and may just be worth a more detailed initial discussion at diagnosis. I'm not quite clear why some of us aren't given that opportunity for discussion."

And that's really what this is all about -- watch and wait is one option, but there are a bunch of others. And as much as I'm happy to give you my opinion, and as much as data from great studies can give you things to think about, the best person to talk to is you doctor. Hopefully, they can help you think through all of it -- the best treatments available, your psychological and emotional needs, your goals (going for a long time between treatments? Ok with something more aggressive?), and anything else that might affect your choice.

And Liz, 6 months into watching and waiting, good luck to you, too. Keep us updated.

And good luck to all of you who are watching-and-waiting. I know it's not easy. But it does get easier with time, and as I said last time, I think it does ultimately make us stronger.

Thanks for the comments everyone. Stay well.

More ASH soon.

 

ASH Preview: Watch and Wait vs Rituxan

I'm getting into the ASH abstracts now (all 282 of the Follicular Lymphoma ones), and there's actually a lot to think about. I'm finding the usual mix that I have found in the last few years -- lots of deeper looks into what we already know, some newer treatments (lots of combinations of new and old treatments), but no real blockbusters that I can see on first glance. 

This first preview post is one of those "deeper dives into what we already know." It's a long-term follow-up of a study that compares Watching and Waiting to Rituxan in asymptomatic FL patients. As someone who watched and waited for two full years, and the had just Rituxan as a treatment, I am very interested in this study.

The presentation is called "607 Long Term Follow-up of International Randomised Phase 3 Study of Rituximab Versus a Watch and Wait Approach for Patients with Asymptomatic, Low Tumour Burden Follicular Lymphoma Shows Rituximab Is Highly Effective at Delaying Time to New Treatment without Detrimental Impact Following Next Line of Therapy."

As the title indicates, this study involved 463 FL patients in the UK, Australia, New Zealand, Turkey, and Poland. They were divided into three groups: one group watched and waited, another was given just Rituxan, and the third had Rituxan + Rituxan Maintenance.

This research has been reported on before (the first patients in it were enrolled in 2004, even before I was diagnosed). Its purpose was to compare how well the three different approaches worked on patients who were a lot like me (and probably some of you)-- no symptoms, not a lot of large nodes, and didn't necessarily need treatment right away. The early results of the study found that after about 4 years, 88% of those in the maintenance group had not had a new treatment, and a similar number for the Rituxan-only group (compared to only 46% of the watch-and-waiters). However, there was no difference in Overall Survival for all 3 groups (which is kind of typical for FL treatments, no matter which ones they are comparing). 

The researchers also report that "Selected [Quality of Life] measures were shown to be superior for patients in the RM arm compared to W&W." This is only a summary of the research, so they don't get into any more detail, but I'm very curious to know what they measured for Q of L. I'm guessing they were emotional issues, maybe? Getting some kind of treatment eases the emotional burden of watching and waiting? (Though it's also interesting that they "selected" Q of L measures. Maintenance can also lower immunity, since B cells are being targeted for a long period of time. maybe that wasn't considered a Quality of Life issue?)

Anyway, this presentation at ASH is a long-term follow up of the same patients -- a median of 12.3 years.

Researchers found that 242 of the patients from the study had needed a new treatment over that time -- 133 in the WW group, 42 in the Rituxan group, and 67 in the maintenance group. The median time that it took for a second treatment was 2.7 years for the watch-and-waiters, 9.9 years for the Rituxan group, and longer than that for the maintenance group (they had not reached the median, meaning less than half had needed a second treatment). After 10 years, 28.8% of watch-and-waiters had not needed a second treatment, compared to 49.4% in the Rituxan group and 64.5% in the maintenance group.

The median was not reached for any of the three groups for a next treatment after that first one.

Some of the other results from the study:

The 4 year progression-free survival for both Rituxan groups was better than for the W and W group.

There was no significance difference for Overall Survival between the three groups.

There was no significant difference in the time to transformation between the three groups.

There was no significant difference in rates of developing a new cancer between the three groups.

It's all a very interesting bit of research, and confirms a lot of what was found out years before. that's what is so interesting to me. Looking at the numbers, there seems to be a lot of evidence to show that watching and waiting isn't worth it, and some kind of Rituxan (with or without maintenance) is a better choice. And yet, we still have lots of people who are watching and waiting.

I think "choice" is the key word here. As I said above, the whole idea of "Quality of Life" has me wanting to hear more. How are they measuring it? Which "selected" qualities did they focus on? (If anyone in the class wants to do a research project for extra credit, feel free to take it on. Find the original research and report back to me. And yes, I am a teacher.)

But thinking about Quality of Life brings up another issue for me -- the emotional benefits of watching-and-waiting. I occasionally have FL patients contact me about treatment choices that their doctor has suggested, asking my advice, especially about watching and waiting. After I remind them that I am not a doctor, I tell them why W and W was a good choice for me, and I remind them that it's not a permanent choice. In other words, you can decide to wait until there are physical symptoms that make treatment necessary (which is what happened to me). But you don't need to wait that long. You can decide after a couple of months that the emotional burden of living with an untreated cancer is just too much. Tell your doctor you changed your mind. Ask for Rituxan. Most patients I talk to don't do that. they manage to live with W and W until it's necessary.

And maybe that's why people keep watching and waiting, even if there is evidence that treating right away is a good (maybe better) choice, at least by some measures. Maybe they hold off out of fear of what kind of side effects will come with treatment.

But maybe, just maybe, it's an emotional test that we give ourselves. We want to prove that we can beat the cancer without needing to be treated right away. 

I'll have to think about that some more.

I'll keep looking at ASH abstracts and writing more soon.

 

ASH Preview

My goodness -- the ASH annual meeting is happening in just over a month.

If you're new around here, ASH is the American Society of Hematology, and every December, they have a big meeting where blood cancer researchers present their work. It's one of the two big cancer meetings that I follow every year -- ASCO in June (or so), and ASH in December.

Last week, ASH abstracts were published online. It's right about the time they are usually published, but they snuck up on me anyway. There are 282 abstracts for Follicular Lymphoma. I'll do my best to go through them and write about the ones that seem most interesting, impactful, or just fun (every now and then, someone will do research that says something like whisky is good for you).

I was reminded about ASH because I got two alerts today about ASH. The first one is from BioPharmaDive, called "Bispecific cancer drugs and gene therapy advances: What to watch at next month’s ASH meeting." The title tells you the focus of the article. Bispecifics are big this year for blood cancers. The article mentions a few studies in lymphoma for new bispecifics. Right now, they will all try to improve on Mosunetuzumab.

The other ASH preview was called, interestingly enough, "Ash 2022 preview – Affimed and Aptose score" from Evaluate. It focuses on two lymphoma treatments -- one a new version of CAR-T, and the other an NK Inhibitor. I'll read more about them later.

The treatments in the articles aren't necessarily aimed at Follicular Lymphoma, but they do inspire me to start reading some more (next week, probably, after my job eases up just a bit this weekend).

I enjoy ASH for the reason I enjoy ASCO -- even if very few of the treatments being discussed will actually make it to pharmacy or the doctor's office, they remind me that there is lots of great research out there, and lots of smart people working to improve our lives. 

More soon (I hope).

Shared Decision-Making

Interesting research from a conference on blood disorders that brings up a lot of important issues.

The conference is from an organization called SOHO (The Society of Hematologic Oncology), and it took place September 28 to October 1. I'll be honest, I'm not really familiar with SOHO, but looking at some of the research from their meeting, it seems like I should find more time to pay attention to them.  

The specific presentation that caught my eye is called "Preferences and Perceptions Regarding Treatment Decision-Making for Relapsed or Refractory Diffuse Large B-Cell Lymphoma (R/R DLBCL)."

From the title, you can see that this isn't about Follicular Lymphoma. And if you've been reading for a while, you know that that there is a connection between FL and DLBCL. While FL is indolent and usually slow-growing, DLBCL is more aggressive and fast-growing, and some FLs can transform into DLBCL. 

But the connection I see isn't really about the type of lymphoma at all. It's about the "Perceptions Regarding Treatment Decision-Making" part of the presentation. How we decide about treatment options is an issue no matter what kind of cancer we might have.

The study looks at how patients, caregivers, and doctors feel about how much involvement all three groups have when it comes to making decisions about treatment. DLBCL is an interesting cancer to focus on because it has few options for relapsed/refractory patients -- that is, patients who have already had at least one treatment, and now need a second or third treatment because the first (or second) didn't work or stopped working after a while. 

The researchers did interviews with 30 people -- 14 DLBCL patients, 8 caregivers, and 8 oncologists. 30 people is a small study compared to something like a large phase 2 or 3 clinical trial, but doing interviews makes up for that -- the researchers can go much deeper with their questions. 

The results were really interesting to me.

About 71% of the patients and 38% of the caregivers felt like they didn't have much choice when it came to the treatment they would receive. This was usually because the doctor told them that the treatment being suggested was a well-established "standard of care." There are guidelines from the NCCN for each type of cancer that make suggestions, based on the most current research, on what treatments should be given whenever a treatment is needed. Another reason, though, was the shock from diagnosis, which made it hard for them to think clearly about what to do.

Interestingly, all of the doctors in the study felt that the limited options available from R/R DLBCL made it hard to integrate patient and caregiver choice into the decision. However, all 8 of the doctors also felt that it was important to include patients in the decisions, but 5 of the 8 also thought that lack of patient understanding made it hard to include them in the decision.

Some other issues that came up (though this doesn't cover al of them):

5 of the 16 patients thought that the doctor had over-emphasized how effective the first treatment would be, so they were unprepared for the return of the cancer.

71% of the patients felt satisfied with their treatment, though 3 patients felt overwhelmed with details, and felt that what they had first been told about treatment ended up not being true, or their treatment plan changed and the change wasn't communicated well. Also, 4 patients felt their doctor wasn't prepared to help them with issues like mental health, and 2 patients thought their doctors didn't know about treatments beyond the standard of care and couldn't make other recommendations.

Now, some of these issues have to do with DLBCL, like there being limited options available. 

But the lessons for those of us with Follicular Lymphoma, in my opinion, are clear:

First, because we do have multiple options for R/R FL, unlike DLBCL, it's possible that we'll have more choice than the patients in this study. There is less of a standard of care for FL than there is for DLBCL -- that is, less agreement among experts on which treatment should be given first, then second, then third. We have lots of options, and the range of options can be confusing (even to some doctors, from what I have been told). It's important that we know our options.

Second, it's important to get second opinions. It's easy for many of us to get overwhelmed at diagnosis, like the patients in this study. But for many of us with FL, there is less urgency. The slow-growing nature of some Follicualr Lymphoma types means we may have weeks or months to make a decision (or even longer -- I watched and waited for 2 years). That gives us time to take a deep breath, come to terms with the diagnosis, and educate ourselves. That's not the case for every FL patient, but for those of us with the luxury of time, education about the disease is a good way to spend that time.

Third, I am very aware that not all of us have a choice. Not just because we need treatment immediately, but also because insurance or whoever pays the bills may have a strict standard-of-care plan, and patients get certain treatments in a certain order whether they like it or not. Some other patients may live in a place where there aren't many oncologists, and traveling for a second opinion just isn't an option. Choices are limited. And that's OK. Choice is great, but it's important to remember too that standard-of-care is the standard because it has the most research to back it up. You might wish that you could try a new inhibitor or a radioimmunotherapy, but R-squared is all that's offered, but that doesn';t make R-squared a bad choice at all. 

The bottom line, in my opinion (and this is a good time to remind you all that I'm not a doctor or a cancer researcher, just a patient who reads and listens a lot): Stay educated. Learn as much as you can. Be able to contribute to the choice when you have the option. And if you don't have a choice, your self-education will at least let you understand the treatment that you do receive.

That's a very good thing.