Thursday, November 30, 2017

ASH Preview: Rituxan Maintenance

Another ASH preview: This one is for "Long Term Follow-up of the PRIMA Study: Half of Patients Receiving Rituximab Maintenance Remain Progression Free at 10 Years."

The PRIMA Study has been looking at the long-term effects of Rituxan Maintenance on Follicular Lymphoma for a while now, and this presentation will look at how patients have been doing after 10 years.

Rituxan Maintenance has been fairly controversial in the Follicular Lymphoma community. It's one of those topics where enthusiasm kind of flip-flops with every new study. One study will find a benefit to it, and then another will show that the benefit wasn't as great as it seemed, or that there were new drawbacks. But neither side has shown enough evidence to make everyone agree on a definite Yes or No to Maintenance.

The PRIMA study looked at FL patients who were given Rituxan + chemo (mostly CHOP, but some CVP or Fludarabine) as an initial treatment, between 2004 and 2007. This was followed by half of the patients (505 of them) being given Rituxan Maintenance (every 8 weeks for 2 years), and the rest (513) getting no Maintenance. There have been follow-up studies of the patients at 3 years and 6 years, and now at 10 years.

The results certainly back up a benefit for R-Maintenance. Those who received it had a median Progression Free Survival of over 10 years. For those who didn't get it, the median PFS was just over 4 years. At the 10 year follow-up mark, 51% of the Maintenance patients had not had their disease progress, while only 35% of the non-Maintenance patients had no progression. The median time to a new treatment was just over 6 years for the non-Maintenance group (that is, it took that long for half of them to need treatment), while the Maintenance group hadn't yet reached the median.

One of the arguments against R-Maintenance is that it means patients are being treated for a long time when they haven't necessarily shown a need to be treated. They might have a clean scan, but continue to get Rituxan anyway. Some argue that this could result in over-treatment, with unnecessary side effects and potential long-term problems. 

The argument that the researchers make here for the value of R-Maintenance is that, because Follicular Lymphoma patients are living longer, it's worth the risk of giving Rituxan for two extra years. If it means patients will then not need treatment for another 8 years (at least), it frees them from the side effects (including developing secondary cancers) that might come if they had to go through another round of chemotherapy or other treatment. It's a compelling argument.

On the other hand, despite the longer PFS, there is no Overall Survival benefit to Maintenance. Both groups had a median OS of about 80% at 10 years. There is a group of people in the FL community that says, while extended PFS is nice, Maintenance doesn't make anybody live longer, and that's really the ultimate goal. So maybe the extra cost, time, and potential side effects of the Maintenance aren't worth it.

I'm still on the fence about it, for what it's worth. I do think that OS is ultimately what we are all aiming for. But as someone who has managed, with just Rituxan, to go almost 8 years without further treatment, I can say that it's pretty nice to not have to stress out about going to the treatment room. There's certainly a Quality of Life argument to be made here. Patients who can go for years without further treatment? That's a worthy goal, too.

The ASH conference is always followed up with commentary from experts, and I'll be very interested to see what the experts have to say about this. Will some of those anti-Maintenance folks come around and change their minds? Will they point out something in the data that we can't see right now by just looking at the abstract? I have a feeling this is going to be one those presentations that gets lots of attention.

ASH is coming up very soon -- it starts next week. We won't have to wait for long to hear from real experts (and not just Cancer Nerds).



Sunday, November 26, 2017

ASH Preview: Progression of Disease in 24 Months for FL

A few posts ago, I looked briefly at an upcoming ASH session called "Early Disease Progression Predicts Poorer Survival in Patients with Follicular Lymphoma (FL) in the GALLIUM Study."


The presentation looked at 1202 patients in the GALLIUM clinical trial, which compared two immunochemoptherapy regimens.  In one, patients had Obinutuzumab + chemo, followed by Obinutuzumab maintenance. In the other, patients had Rituxan + chemo, followed by Rituxan maintenance. As I said in the post last week, the results from this trial helped get the Obinutuzumab regimen approved for untreated Follicular Lymphoma.

Because the study dealt with untreated patients who were getting immunochemotherapy (the chemo was CHOP, CVP, or Bendamustine), it was a convenient place to also look at POD24.

POD24 stands for Progression of Disease at 24 months -- for patients who had received  immunochemotherapy and then had their disease get worse, their Overall Survival was lower than those who did not have Progression of Disease in that time.

I know some of you are in this group, or have had immunochemotherapy and haven't made it to 24 months yet, and the numbers worry you. I'm not going to tell you not to worry. I've been in your shoes -- the diagnosis is still raw, and it might not matter what anyone tells you. The worry is going to be there.

But it might be helpful to look more closely at the numbers.

Of the 1202 patients in the trial, after 24 months, 155 were POD24, and 916 did not progress.  So, first off, if you've had immunochemo and you haven't gotten to 24 months yet, the numbers show that the treatment worked well for a whole bunch of people -- about 87% of them. Of the 155 patients who were POD24, 56 died. Of those 56, only 40 died due to Proogression of Disease; the other 16 died of other causes (remember, Overall Survival measures death by any cause).

So 40 of 1202 patients who received immunochemotherapy died from their disease -- that's about 3%. As for those who were POD24, that's about 26%.

It's easy to focus on words like "lower Overall Survival," and it's easy to get caught up in numbers. But it's also important to remember that those numbers look at trends, not at individual patients. What happened to 40 people in a large trial doesn't say anything about you individually. And if you want to look at numbers, look at this: 40 of 155 POD24 patients died, but 115 of 155 didn't. That's a 74% survival rate. Pretty good odds, really.

To me, you can look at POD24 as being bad or good. Most who are in the situation will think of it as bad, and that's an understandable reaction. While the idea of POD24 is only a few years old, POD24 patients have been around for as long as Follicular Lymphoma -- we just hadn't identified that group yet. So being able to identify POD24 patients is a good thing. Researchers know they exist, and can start finding ways to help them.

There are a few other POD24-related presentations at ASH.

Like the GALLIUM presentation, another one confirms that POD24 is a valid thing: "Validation of POD24 As a Robust Early Clinical Endpoint of Poor Survival in Follicular Lymphoma: Results from the Follicular Lymphoma Analysis of Surrogacy Hypothesis (FLASH) Investigation Using Individual Data from 5,453 Patients on 13 Clinical Trials"

The good thing about this one is, besides confirming that there are POD24 patients, they also found some other factors that could help build a prognostic model. In other words, they might be able to identify trends that could allow oncologists to identify patients as being at higher risk for POD24, and find other ways to treat them.

Another presentation, "The Tumor Microenvironment Is Independently Prognostic of Conventional and Clinicogenetic Risk Models in Follicular Lymphoma," also confirms that POD24 is real, and goes a step farther by identifying some Tumor Microenvironment markers that could help researchers figure out who is at higher risk.

Yet another presentation, "Impact of PET Staging of Follicular Lymphoma on Treatment Outcomes and Prognosis," looked at the effect of CT and PET scans on EFS24 (Event-Free Survival at 24 months, similar to POD24). Researchers found that patients who had PET scans had a higher OS than those who had CT scans, indicating that PET might be useful in predicting EFS24.

All of this research points to the same thing. While there isn't yet a way to predict POD24 patients, or a way to treat them that is guaranteed to work, a bunch of teams of researchers are working on it. In the last couple of years, I've seen many Follicular Lymphoma experts give summaries of where they think research is headed, and almost all of them said that it was important to work on the POD24 issue -- finding ways to identify them, and finding ways to treat them. Clearly, that work is happening.

In the meantime, the best thing we can do is what we've always done -- pay attention to you body, stay informed, and insist on honest and open communication so you can get the best care possible.

Thursday, November 23, 2017

Being Thankful

Today is Thanksgiving in the United States (I know some of you are from other countries). It's a day we're supposed to stop and think about what we are thankful for.

I say "supposed to" because I think the "being thankful" part of the day is kind of automatic for a lot of people. Many families have a tradition of going around the table and having everyone say something they are thankful for. It's a nice tradition, though I think it's easy for people to joke about, or say something obvious.

It's harder to really think about, and answer to honestly.

Harder still when you're a cancer patient.

And maybe even harder than that when you have a cancer that is considered incurable.

It kind of takes one of those automatic answers off the list -- "I'm thankful for my health."

But I really am thankful for my health.

I'm healthy enough to be able to spend the day with my family. I'm healthy enough to wrap my arms around my wife and tell her I love her. My kids are all home, together under one roof, for the first time in months. I spent yesterday afternoon making pies, and today I'm going to eat way more than I should. I can do that. Not everyone can.

I'm healthy enough to continue working. I like my job -- a lot -- and even on bad days, I can get things done and look back at the end of the day and see what I accomplished. Maybe not everything I'd hoped, but something. Not everyone can.

I'm healthy enough to help others. As many of you know, since last spring, I've tried to expand my advocacy work, writing more than just the blog, and sharing all those years of experience with others. I'm healthy enough to do that. Most nights, I have enough energy left to do some reading and writing. Not everyone can.

Like most people, I can look back at my life and think of the people who haven't been able to do the things that I'm healthy enough to do.

I know people who haven't been healthy enough for receive the hugs I wanted to give them. I can remember a Thanksgiving dinner in a hospital room, visiting a loved one. I know folks who really want to help with the dishes, but who just need to lie down, and not because the big meal made them sleepy.

I'm not trying to make Thanksgiving about guilt. It should be a joyful time, focusing on the blessings we have.

But I also know how easy it is to focus on the things are not so joyful. So maybe focusing on what we are not -- completely healthy -- can be a way of helping us see what we are -- healthy enough.

That's what I'm focusing on today.

I hope you all enjoy the day, wherever you are, and that you're healthy enough to do something special, that makes you feel good, whatever it is.

Sunday, November 19, 2017

FDA Approval for Obinutuzumab (plus more ASH stuff)

The FDA announced on Friday that it had approved an Obinutuzumab combination for untreated Follicular Lymphoma.

Specifically, the approval is for Obinutuzumab plus chemotherapy (CHOP, CVP, or Bendamustine), followed by Obinutuzumab Maintenance. A similar combination with maintenance was already approved for FL patients who could no longer take a Rituxan-based treatment.

The approval came because of results from the GALLIUM trial, which compared the Obinutuzumab + chemo + maintenance to Rituxan + chemo + maintenance. In the trial, Obinutuzumab showed better Progression Free Survival than Rituxan. Overall Response rate was slightly better as well.

Given the results, it seems appropriate that Obinutuzumab gained FDA approval. The numbers do show that, in the circumstances tested, Obinutuzumab outperformed Rituxan. It's another option for us.

At the same time, though, when the results of the trial were published about a month ago, some experts questioned whether or not Obinutuzumab really was superior. The doses of the two treatments weren't same (Obinutuzumab's was higher), and the adverse events (bad side effects) were higher for Obinutuzumab as well. Lots of experts thought this meant there was not as clear a reason to switch from Obinutuzumab to Rituxan as it might seem at first.

But the approval is there now. Time will tell if oncologists make the switch.

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Updated results from the GALLIUM trial will be presented at ASH next month.

It looks like there are several presentations about data from the GALLIUM trial.

One that really stands out to me is called "Early Disease Progression Predicts Poorer Survival in Patients with Follicular Lymphoma (FL) in the GALLIUM Study."As part of the analysis of the GALLIUM data, researchers looked at POD24 -- patients who had Progression of Disease within 24 months after receiving immunochemotherapy (which would include patients in both the Obinutuzumab and Rituxan arms of the GALLIUM trial). It's been known for a few years now that this particular group of patients (about 20% of those with FL) has a lower Overall Survival that other Follicular Lymphoma patients.

The researchers found that the Obinutuzumab patients had a better chance of not being in the POD24 group (about a 33% better chance). However, overall, the study confirmed the idea that POD24 was an issue -- patients who have had immunochemotherapy whose disease returns or gets worse within 24 months have a lower Overall Survival rate.

While the whole idea of POD24 concerned FL experts, it also gave them some hope. Identifying this group of patients meant that they could start working on identifying them early and finding treatments that would be effective.

I'm working my way through those abstracts and trying to find a way to make sense of them all.

If you're in that group, stay hopeful -- a greater chance of something doesn't mean it's guaranteed. And some of the ASH research of POD24 seems to provide more reasons to be hopeful. That problem isn't solved, but it's clear that there are a lot of smart people who are looking into it.

More ASH stuff soon.


Wednesday, November 15, 2017

Some Thoughts About Overall Survival in FL

This is sort-of related to ASH, though it isn't looking at one of the abstracts, like I usually do this time of year.

I've been reading the ASH abstracts (over 200 of them) looking for the ones that I find interesting or worth talking about in some way. And I came across a few that mention OS, or Overall Survival for Follicular Lymphoma. It's worth talking again about OS and what it means.

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The ASH abstracts are basically summaries of what the presentation is going to be about. They mostly start off with an Introduction -- some description of the general topic of the presentation. The rest of the abstract gets into the specifics. Some of the Intros start off really general, describing what Follicular Lymphoma is, and, if it's appropriate, giving some statistics about things like OS.

As I was reading, one of the things that I found really interesting was the different ways that various researchers talked about FL and OS. For example, these are from 4 different Introductions:


  • "Most patients experience an indolent disease course, with median survival of over 15 years."
  • "Follicular lymphoma (FL) is the most common indolent lymphoma with a median survival approaching 20 years."
  • "Follicular lymphoma (FL) is usually an indolent malignant B-cell lymphoma with median survival now approaching 20 years in the rituximab treatment era."
  • "Despite an indolent course, it remains an incurable disease and the overall survival (OS) is 70-80% at 8 years in the rituximab era."
  • "The clinical course of follicular lymphoma (FL) is characterized by recurrent relapses and progressively shorter remissions, with many patients surviving beyond one decade from initial diagnosis."
Now, to be clear, these are written for other oncologists and hematologists -- experts in blood cancer. And, to be clear, they have reasons for presenting these numbers the way they do. It helps set up the point they want to make about the research they did and why it's important. And those numbers all mean basically the same thing, if you look at them closely enough. But it's strange that they are all presented differently.

And I'm looking at these numbers as a patient. Patients read numbers differently than doctors do.

I did a quick Google search, and it showed me various sites (all up-to-date and reputable) that give the median OS for FL as 19 years; 14 years; over 20 years; "historically 8-10 years" but longer recently; and "Around 10 years," but ranging from 1 year to 20 years.

It's all very confusing, isn't it?

And what makes it worse is that, especially for someone newly diagnosed, survival numbers are really, really important. It's one of the first questions we ask -- "Cancer? Oh no! How long do I have?!"

Unfortunately, the media OS isn't going to give you an answer.

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So what's the deal with Overall Survival?

First of all, the reason the ASH abstracts are kind of fuzzy is that there isn't really agreement on what the median OS is for Follicular Lymphoma. I have read that it's because many patients live for a long time. It's hard to calculate a median survival (a measure of when people die) when people are staying alive. So that's a good thing.

The numbers are also kind of fuzzy because different studies have come up with different figures. There are a lot of factors that can mess with that number -- the age of the patients, the treatments they have had, how long ago they were diagnosed, and how treatments have improved recently. So it's easier to say "approaching 20 years" or "over 15 years" or (to be especially vague) "beyond one decade" than it is to give a definite number.

But, as patients, none of that really eases our minds. There's a big difference for us between 10 years and 20 years.

So here are some things to keep in mind about Overall Survival, especially if you're one of those folks who was recently diagnosed, or who obsesses over numbers. I hope it eases your mind just a little.

First, OS is usually expressed as "Median Overall Survival." And "median" matters. It doesn't mean "average." In statistics, the median is the middle of a group of numbers. So if the median OS for Follicular Lymphoma is 20 years, and they came to that number by looking at 1000 patients, that means that 500 of them will live for less than 20 years, and 500 will live for more than 20 years. On the "more" side, that could go on for a long, long time -- 21 years, 25 years, 50 years. There is no upper limit. A median OS of 20 years does not mean you have only 20 years to live. It meas you have a 50% chance of living longer than that -- maybe much longer.

Second, "Overall Survival" is just that -- the number of patients who have survived overall. It measures death by any cause. That includes lymphoma-related deaths, but also death by heart attack, or by snake bite, or by getting hit by a double-decker bus. It's easy to think of that number as being just about lymphoma, and that makes lymphoma seem so much scarier. But OS includes any reason for not surviving.

Third, keep in mind that the average age at diagnosis for Follicular Lymphoma is somewhere in the 60s. That puts the OS number in a different light, especially for those of us who were diagnosed at a younger age (like me, diagnosed at 40). Right now, in the United States, a male who is 60 years old has a life expectancy of 83.3 years. He will live, on average, another 23 years. Compare that to the OS for a patients diagnosed at 60 with FL: about 80 years. Not a huge difference. In fact, you will sometimes see discussions of FL survival point out that it is "approaching the general population."

And keep in mind that the numbers are different for different age groups. People under 60 (I have read) have a higher OS than the overall median. We can expect, statistically, to be on the part of the scale that goes way beyond 20 years.

One more thing: this OS number changes. All the time. It has risen steadily in the almost 10 years that I have been a patient. I remember a loved one emailing me and my wife in a panic because he'd looked up Follicular Lymphoma and Wikipedia said the median OS was 8 to 10 years. So it has about doubled since then, thanks to better treatments and better ways of measuring. I expect it to go up some more in the next 10 years (and I expect to be around to watch it).

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Here's the point I want to make:

Try not to obsess about numbers.

I know it's hard. Numbers seem so sure, and so final, and so unchanging. 2 + 2 always equals 4. In our emotionally-charged brains, it's easy to go from that to thinking "and therefore, I have only 20 years to live" (or 14, or 8 to 10).

Numbers aren't as sure as they seem to be. The huge range of OS statistics out there should prove that. And if experts are only willing to give fuzzy numbers, that should make it even more likely.

A median or an average says nothing about each of us as individuals.

The best we can do is live a good life, enjoy every day, be kind to one another, make the world a better place, learn as much as we can about our disease, and be active in the decisions that get made about our healthcare.

And have dessert.

So go do all of those things.

Friday, November 10, 2017

ASH Preview: Surveillance Scans for Follicular Lymphoma

Surveillance Imaging is common in Follicular Lymphoma -- CT or PET scans after treatment that are meant to find out whether or not the FL has returned.

They are common, but controversial. With every scan, you get radiation. In fact, a CT scan exposes a patient to about 200 times the radiation of a chest x-ray. The question is, is it worth it? Will the scan catch the cancer before the doctor or patient can? I have read (and I cannot find or remember the source) that about 80% of recurrences of FL come from the patient reporting symptoms, not from routine scans. Is that true?

The ASH presentation "Surveillance Imaging during First-Remission in Follicular Lymphoma Does Not Impact Overall Survival" adds some data to answer that question.

The research involved 148 FL patients who had responded to a first treatment. The were observed for a median period of just under 5 years. Of that group, 55patients then had a relapse, discovered either by a surveillance scan or by clinical examination (the presence of symptoms, an abnormal exam, or by lab findings).

Of those 55 relapses, 35 of them (64%) were detected clinically, and 18 of them (33%) were asymptomatic but were found during a routine scan. There was no difference in Overall Survival between the two groups.

Breaking things down even more, the researchers looked at all of the scans for the 130 FL patients who had routine scans at their cancer center (including those who didn't relapse). 584 of the scans were part of routine surveillance for patients without any symptoms, with 68 of them for patients who were thought to have relapsed (even though they were asymptomatic). Just 22 of those "concerning" scans showed that there was FL. So only 3.8% (22 out of 584) of the scans for patients who didn't have symptoms resulted in a positive diagnosis.

Their conclusion: Only 1 in 25 scans results in a confirmed diagnosis for Follicular Lymphoma. With no Overall Survival benefit from doing the scans, there has to be some question about whether it's worth it. They recommend a larger study to see if the results can be confirmed.

As a patient, I have a mixed history with scans, but I now firmly believe that if there's no reason to do a scan, they shouldn't be done.

After I finished my Rituxan, I had a PET to confirm the results (this is common and NOT controversial). My dear Dr. R put off doing another scan. At every visit, he'd say, "We could do one, but there's no reason to, so let's hold off. Maybe next time." After about four years, I asked for one. I wanted to satisfy my own curiosity, mainly. It's hard writing about cancer so much and not knowing what exactly is going on inside your own body.

So I had the scan. It confirmed the presence of some FL, but not much. I was satisfied.

A couple of years later, Dr. R moved out of state, and I was switched to Dr. K.

Dr. K had a bad habit of not listening to me. He kind of had a set speech for every visit, and any time I tried to break in ("Yes, I do know what white blood cells are...."), he would steamroll over me. Very frustrating. I don't like it when I'm not being listened to.

So after a couple of visits, he said he wanted to do a PET scan. I asked if there was a concern.

"No, no concern. Just for a baseline. I don't think we'll find anything, to be honest."

"Then why do it?" I asked.

"Just so we can see what's there. I don't think we'll find anything."

"Then why do it?"

We did this a couple more times, and then the visit was over. His assistant noted that Dr. K wanted to schedule a scan.

"I'll get back to you on that."

Dr. K retired before my next appointment. I still haven't gotten the scan he wanted. It made no sense to me to get one when even the doctor didn't think it would find anything, Why take on all of that radiation for no reason?

The evidence from this research certainly seems to show that I was right.

(Oh my gosh, do I love being right!)

I understand the need to want to confirm that things are still OK, and want a clear picture (literally) that they are. It's the same as any kind of watching and waiting -- we're relying on our own understanding of our bodies to make sure everything is, and sometimes it's helpful, emotionally, to have science confirm that understanding. I get it. And I would never judge any Follicular Lymphoma patient for wanting a scan because it makes her feel better. that matters, too.

But, looking at things long-term, we also need to trust that clinical exams will find bad things, and that includes our own self-examination of symptoms.

Don't be bullied into a scan. Get it if it's your choice, and you understand the risks.

Tuesday, November 7, 2017

ASH Preview: Follicular Lymphoma: The Good, The Bad, and The Grade 3

OK -- time to start looking at some ASH abstracts.

In the comments in my last post, Dan suggested I look at the abstract for a session called "Effect of Histologic Grade on Clinical Outcomes of Follicular Lymphoma: Prolonged Progression Free Survival of Grade 3 Follicular Lymphoma in the Rituximab Era."  I had my eye on this one because a few people were discussing it in the support group I've been in for years. ( I rarely post anymore, but I check in every day. the link is on the right under "Sites I Like.")

There's a lot going on in this abstract.

The researchers are interested in Grade 3 Follicular Lymphoma, and how it compares to grades 1 and 2 in terms of outcomes. (I was diagnosed as grade 1, with some grade 2.) In general, a higher grade means the cells are expected to behave more aggressively. The grade is determined by how many large, aggressive cells are visible by a pathologist in a particular area. (See Lymphomation.org for more on this.)

The important thing is, higher grade = more aggressive type of FL. It's more complicated than that for lots of reasons; the Lymphomation link gets into some of that.)

Grades 1 and 2 are usually considered less aggressive. Grade 3 used to be just one grade, but now it is usually broken into grade 3A (which behaves like grade 1 and 2) and grade 3B (which behaves more like Diffuse Large B Cell Lymphoma, a more aggressive type).

I'm going to assume that anyone reading this knows their (or their loved one's) grade.

The researchers wanted to know the difference in outcomes for the different grades. It seems reasonable to think that grade 3 would probably have worse outcomes, right? We've all been told about Transformation, and we're scared of it. Our slow-growing lymphoma becomes fast-growing, and that's bad. Aggressive must be bad. right?

Turns out that's not the case.

The researchers looked back at 227 patients who were diagnosed with FL between 2002 and 2014. 27% of the patients has grade 3 FL (either 3A or 3B) and the rest had grade 1 or 2.

The results: patients with grade 3 FL had a higher rate of Transformation (30%) than grade 1 and 2 (12%).

But there was no real difference in Overall Survival between the groups.
Grade 3 had a higher Progression Free Survival (61% after 5 years, versus 41% for grades 1 and 2).
The grade 3 group had a higher PFS when they limited it only to those who had immunochemotherapy with anthracycline (like R-CHOP). And when they isolated out the grade 3A patients, they had a higher PFS, too.

Here's their conclusion: "In this retrospective study of outcomes of follicular lymphoma in the rituximab era, we observed that patients diagnosed with grade 3 FL have better PFS than patients diagnosed with lower grade FL. This improved outcome appears to be independent of the choice of initial therapy, with an apparent plateau in the risk of relapse of patients diagnosed with grade 3A FL, suggesting a subgroup of these subjects can receive front line treatment with curative intent."

In other words, their data suggests that initial treatments for some patients with grade 3A might last long enough that it could be considered a cure.

Wow.

I'm guessing there's going to be some commentary from experts on this one in the next few weeks, as we get closer to ASH. It's surprising, but it makes sense.

DLBCL is an aggressive cancer, but it's curable, unlike most Follicular Lymphoma. So a grade that has more aggressive cells, and that behaves like an aggressive lymphoma, would more likely to be curable.

From a patient perspective, though, it brings up an interesting issue (one that was touched on the the support group discussion).

When it comes to Lymphoma, what's "good" and what's "bad"?

I remember, years ago, in that same support group, a discussion broke out about indolent and aggressive lymphomas. A lot of us have had people say to us, "Follicular Lymphoma? Well, at least you got the good one," or "If you're going to get one, this is the one to have."

Is it?

The folks in the support group had a debate over which was "better" -- the aggressive one that is potentially curable, or the indolent one that you might live for years with.

The aggressive one is scary. It grows quickly. You see the numbers getting larger by the week.

But R-CHOP or B-R or a stem cell transplant might cure it. That's good.

But it might not. That's bad.

An indolent lymphoma like Follicular might go years without needing treatment. That's good.

But those years aren't always happy years. Every bump or lump or lingering cold or tingling foot or swollen ankle or pulled side muscle means panic for a few days until it gets better or the oncologist will see you and check it out. That's not so great either. It takes a toll, emotionally and physically.

(As you know, I think FL is as much an emotional disease as a physical one.)

If I could go back 10 years and choose one over the other, which would I choose?

I honestly can't say.

The lesson, I guess, is that as patients, we can't assume a diagnosis, whatever it is, is better or worse than another. Our job is to understand what we have, educate ourselves enough to be clear about our options, and insist on an honest and open conversation with our doctor in which our voice is respected.

More ASH previews to come. I hope they aren't all this emotionally exhausting.....

Friday, November 3, 2017

ASH Abstracts Are Here!

Last night, I saw my first ASH abstract linked on Twitter. You know what that means -- ASH is coming!

It's the Cancer Nerd Christmas!

If you're new to this, ASH is the American Society of Hematology, a large professional group for blood cancer specialists (and specialists of other blood disorders). Their annual meeting takes place around the first week of December every year. This year, it's in Atlanta, Georgia (lovely city) from December 9 to 12, and it is often the place where researchers will talk about the work they are doing, sometimes releasing or updating results from clinical trials.

A few weeks before the meeting, the chatter starts. Last night, I saw an abstract on Twitter. This morning, I had a couple of emails in my inbox from publicists who were hinting that good things were going to be announced at the meeting.

It really is like Christmas, with moms and dads telling kids that Santa Claus will be coming soon. Only it's researchers and public relations offices, and instead of getting me excited about video games and dolls, they're talking about immunotherapy combinations and cell-signaling pathways.

Tome, that's just as much fun. And even better, I don't need to behave myself for the next 6 weeks because Santa might be watching.

I have only taken a very quick look at the abstracts for Follicular Lymphoma (you can see them here if you're curious), but it looks like a lot of updates to data from recent clinical trials. I see a lot of Rituxan-focused abstracts, too, and Bendamustine keeps coming up. There will be more updated data for Copanlisib, and more results for trials involving Obinutuzumab, and for Lenalidomide. And it looks like a few abstracts on Transformation.

There's going to be a lot to go through.

My plan, as usual, is to sift through abstracts and write about things that I find interesting. It's pretty subjective -- some of the things I find interesting aren't necessarily that ones that the actual experts are excited about.

It's also important to remind you that I'm not going to be at the meeting. I'm just looking at the abstracts -- the summaries of what's going to be talked about. Sometimes what actually gets said is more important than what gets sent in weeks before the meeting.

I'll also keep an eye out on Twitter and elsewhere for what some of my favorite blood cancer specialists are saying about the meeting, and what has them excited.

And I'll keep an eye out for press releases and articles that come out during the meeting and soon after, bragging about the success of their presentations. (And many of them will be worth bragging about.)

So look for lots of stuff about current research over the next few weeks.

I'll post as often as I can. Looking forward to it. Merry Cancer Nerd Christmas!