Tuesday, December 22, 2020

Some Thoughts on Blogging and Emails

About a month ago, KarenTeacher left a comment:

I find your posts informative and useful, but I don't always remember to look for new posts - is there a way to subscribe to them, or otherwise be notified when you post a new blog post?

I wasn't ignoring you, Karen. I was doing some research. 

To answer your question, yes, there is a way to get notified about new blog posts.

However, I don't have that feature set up on the blog. I'll explain why.

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I've always valued readers' privacy. I think readers in Europe are required to get a notice about cookies and data collection when they visit the blog. What they see is a message from Google, which owns Blogger, which hosts my blog. I don't set the cookies, and I don't see any data about individuals who visit the blog. 

I do, though, get some aggregated data -- I know which countries readers come from, and how many come from each country. (I'm popular in Spain and Canada this week.) I know which referring sites you come from (like Google, or Facebook, or Lymphoma News Today -- the site you were on when you clicked on a link that brought you to the blog). I also know how many of you use which browsers and operating systems. I have no idea what to do with most of that information. Google collects all of that and gives it to me.

But I don't know anything about you individually. Not your names or emails, unless you tell me who you are. Some of you email me occasionally, which I really enjoy. I like making those personal connections. But I don't know anything about you that you don't tell me voluntarily.

And I kind of like it that way. I love hearing from you and getting to know some of you. But I don't want to force that on you. You deserve the privacy that you choose.

I'll be honest -- I'm not good at being a blogger. I think I do well as a writer. But there are things I'm supposed to do as a blogger that I don't do. 

For example, I don't do advertising. "Best practices" say that I should. I could make a little money off ads, but I don't like the cost to readers. When I was first diagnosed, I used to get all kinds of ads for things like life insurance and funeral homes. And I know it was because I was searching for information about cancer. It really turned me off of internet ads, and I decided I didn't want to do that same thing to readers -- ave ads pop up that made them sad. Ads are much more sophisticated now, and you'd probably get something tailored more to your other interests if I was using ads. But I don't want to add to all of that advertising online.

As a blogger, I'm also supposed to do things like add images to my posts. I could do that, too, I guess, but what kind of image would I use for a post on bispecifics? If  was going through active treatment, I'd post pics of myself. That's a very popular thing that cancer advocates do, and I love it. But given the kind of posts I write, it just doesn't make sense to me to try to force an image. I've been using the same template since I started the blog, with the lime green rectangle at the top. It's very simple. I think it keeps the focus on the words and ideas. It's not what I'm supposed to do, but I do it anyway.

I'm also supposed to publish on a schedule, so readers know that they can come to the blog, say, every Sunday and Wednesday and find new material. I don't do that, either. My schedule is too unpredictable to have a set schedule. Plus, some posts just take more time to make sure they are accurate and clear. A schedule would be easier on you readers, I know, but I just can't do it.

One last thing I'm supposed to do -- I'm supposed to get email addresses and create a contact list of all of my readers. And the easiest way to do that is to have an email sign-up for notifications. And then I'd have your emails. I guess I could use your addresses for something else besides sending out notifications of new posts, though, again I don't know what that would be. I certainly wouldn't sell them to anyone. I can promise you that.

So I hope that gives you some sense of why I do what I do, and why I don't do what I don't do, and why I might be reluctant to collect email addresses. 

*******

That said, if you all think an email notification would be helpful, then so be it. I can add the widget and put it on the site. It will take me about 30 seconds.

But I want some feedback from you -- I want to know that people have read this and understand it and are still OK with it. So if you want an email notification, tell me by leaving me a comment below, saying so. If enough of you are interested, I'll make it available.

And I'll feel better knowing that you know what you're getting into.



Friday, December 18, 2020

ASH: Natural Killers and Follicular Lymphoma

One more from ASH.

But first, Targeted Oncology wrote up a recap of ASH a couple of days ago, and described the presentations that they thought were most significant.  They list a few under Lymphoma, and the ones that focus on Follicular Lymphoma are those that focus on CAR-T (the ZUMA-5 trial) and on Bispecifics (there are a few of them). I mention this because those are the the ones that I saw the most buzz about online during and after ASH. So it's nice to see that the things I heard are also the things other people heard. I like being right. (And it should probably be comforting to you to know I get things right.)

Now, back to the last "buzzy" presentation at ASH that looked at Follicular Lymphoma:

 "Results of a Phase 1 Trial of Gda-201, Nicotinamide-Expanded Allogeneic Natural Killer (NK) Cells in Patients with Refractory Non-Hodgkin Lymphoma (NHL) and Multiple Myeloma."

GDA-201 is a treatment that involves Natural Killer Cells. These are a type of immune cell found in our bodies. Unlike some other immune cells that attack an invader (like a bacteria or virus), Natural Killer Cells attack our own cells that have been infected with an invader. Viruses, for example, work by taking over a cell and then multiplying rapidly. A Natural Killer Cell recognizes that this infected cell is different from other normal, and kills it off.  

This makes a Natural Killer Cell a really interesting target for Immunotherapy. Our own immune systems don't kill off cancer cells because cancer cells are not "invaders" or outsiders. Instead, cancer cells are our own cells that haven't learned how to die the way they are supposed to. Most of our immune cells will look at our own cells and leave them alone. But a Natural Killer Cell is made to say, "Hmm, something's not right here." But even a Natural Killer Cell won't kill off a cancer cell. Still not different enough from regular cells to be concerned.

GDA-201 gets around that by using someone else's Natural Killer Cells. The donor cells are trained to recognize cancer cells (the way the NK cell would recognize a cell that had been taken over by a virus), and goes after them. GDA-201 isn't the only attempt out there to use Natural Killer Cells, but it's the one that, so far, has shown some success with blood cancer.

For this research, donor NK cells were manipulated and grown in a lab. The cancer patients in the study were then given a monoclonal antibody (like Rituxan) to kill off or weaken a lot of the cancer cells. Then the NK cells were put into the patient.

Results were very good. It's a phase 1 trial, so there weren't many patients -- 15 with lymphoma and 15 with multiple myeloma (another blood cancer). Of the lymphoma patients, 6 had Follicular Lymphoma.

The good news is, all 6 FL patients had a Complete Response. For the whole Lymphoma group, the median duration of response was almost 9 months.  One-year estimates of Progression-Free Survival was 66%, and Overall Survival was 82%. 

Side effects were manageable. There was some concern that something like Cytokine Release Syndrome, which is common in CAR-T and some other immunotherapies, might be an issue. But at least at the doses that they tested, there were not any unexpected side effects (though there were some, of course).

This is a phase 1 trial, with very few participants, so there's certainly no guarantee that those good results for FL patients will remain in later trials. But it does seem like the makers of GDA-201 are planning to move ahead, and we'll likely see more of this treatment in the future. I kind of have a good feeling about this. (And hey, I was right about the other stuff, wasn't I?) 

But seriously, the concept does make sense, and I do think we'll hear more about this one n the next few years.

So no big blockbusters at ASH this year, but a few small things that are worth being excited about. At this point, we know that even small progress is still good progress.


 


Sunday, December 13, 2020

ASH: Bispecifics for Follicular Lymphoma

More on ASH.

As I said in my last post, now that the ASH conference is over, and companies and researchers have made their presentations and seen the reaction to them, there has been more discussion online about them. I've been seeing a lot of discussion about three things related to Follicular Lymphoma. The first one (which I discussed last time) is the ZUMA-5 trial, which looked at CAR-T for slow-growing, indolent lymphomas like FL. 

The second one is the excitement about bispecifics. A bispecific is a treatment that attaches to two proteins instead of one (which is where the "bi" comes from).

Think of it this way: a treatment like Rituxan is a monoclonal antibody. It works by seeking out a specific protein on blood cancer cells, called CD20. When the Rituxan finds a B lymphocyte (the white blood cell that turns cancerous for us, and which has CD20 on the surface), it attaches to it and kills it. I haven't linked to this in a while, but here's a cool video that shows how Rituxan kills cancer cells

I bispecific works in a very similar way, but instead of attaching to one protein, it attaches to two of them. Since we're looking at cool videos today, here's one from Genentech that describes how bispecifics work. Because bispecifics are created antibodies, they can be manipulated to go after cancer in a bunch of ways. For instance, they can attach to two different proteins on the surface of a cancer cell, doubling the chances of the treatment finding the cancer. Or they can find and attach to two different cells -- one cancer cell, and one immune cell, so the immune cell can more easily get to the cancer cell. 

If you've been reading the blog for a while (or if you're just a cancer nerd), you know that Rituxan has played a big role in the jump in Overall Survival for Follicular Lymphoma in the last 20 years or so. Rituxan can do a great job on its own for some people (like me), but really shines when it is combined with other treatments, whether traditional chemotherapy (think R-CHOP or B-R) or non-chemo (think R-squared). But bispecifics have the potential to be even greater than monoclonal antibodies like Rituxan (also known as MabThera) or Obinutuzumab (also known as Gazyva). 

Lymphoma experts are excited about that potential, and they had lots to say about some of the presentations at ASH.

The first was Odronextamab, which has been going by the name REGN1979. I wrote about this last year. REGN1979 is one of those bispecifics that attaches to the cancer cell (through CD20) and to an immune cell (through the protein CD3). The ASH presentation that is getting people excited is called "Odronextamab (REGN1979), a Human CD20 x CD3 Bispecific Antibody, Induces Durable, Complete Responses in Patients with Highly Refractory B-Cell Non-Hodgkin Lymphoma, Including Patients Refractory to CAR T Therapy." 

In this study, 127 patients with Relapsed or Refractory B cell Lymphomas (including 37 with Follicular Lymphoma) were given Odronextamab. The FL patients did well. This was a dose-escalation study, which meant they tried different doses to see which was most effective. For FL patients who received a particular dose, the Overall Response Rate was 93%, and the Complete Response Rate was 75%. The median duration of response was 7.7 months, and the median duration of Complete Response was 8.1 months. Pretty good.

What really got researchers excited, though, was in some of the patients with Diffuse Large B Cell Lymphoma, a more aggressive lymphoma than FL. In particular, there were some patients who had CAR-T, but whose cancer returned. For those patients, the ORR was 33%, and the CRR was 23.8%, with all 5 of the CRR patients still having a response. That's pretty cool, and should provide some hope to that population, especially if researchers find ways to improve on that number. 

Another bispecific that got some attention was Mosunetuzumab.  This bispecific has been getting some buzz for three years in a row now. The presentation is called "Mosunetuzumab Shows Promising Efficacy in Patients with Multiply Relapsed Follicular Lymphoma: Updated Clinical Experience from a Phase I Dose-Escalation Trial." 

Like Odronextamab, Mosunetuzumab is a CD20/CD3 bispecific, attaching to a cancer cell and to an immune cell. This study focuses only on FL patients (62 of them), though all were relapsed or refractory. Numbers were good here, too. The Overall Response Rate was 68%, with a 50% Complete Response Rate. CRR was good for high-risk patients, including POD24 (53%) and the 4 who received CAR-T (50%). The median duration of response was a little over 20 months.

Of course, all treatments come with side effects, and bispecifics are no different. They included many of the side effects that come with blood cancer treatments, including nerve issues and blood count issues. See the links for more information.

I think this all looks promising. I've been especially interested in bispecifics because my oncologist mentioned them as a possible treatment, if and when I need treatment again. (There was a bispecific trial happening at the hospital I go to.) I don't particularly want treatment, but I really like the idea of bispecifics, and the excitement they are generating. 

One complaint -- Follicular Lymphoma treatments roll out pretty regularly, but not so regularly that I can't learn their names.  But these two seem harder than most. I won't complain if they eventually get approved in a few years, but I'm warning you now to look out for spelling errors.

A little more ASH news to talk about. Come back soon.



Tuesday, December 8, 2020

ASH: ZUMA-5 and CAR-T and Follicular Lymphoma

The ASH Conference is over now, but the fun keeps coming.

As I said a few weeks ago, when I started looking at ASH, I said that there wasn't a lot of excitement about the Follicular Lymphoma research, at least in the days before it started. (Sometimes, if there's something really big and important that's going to be presented, the oncologists I follow on Twitter will start talking about it.)

As it turns out, there were a few (three, actually) presentations that got people excited. I'll share them over the next few days.

The first was the presentation on the updated results for the ZUMA-5 clinical trial. ZUMA-5 is one of the trials that is testing a particular CAR-T on different blood cancers. ZUMA-1 was the trial that got CAR-T approved for use with aggressive lymphomas, including transformed FL. ZUMA-5 is a phase 2 trial that is looking at CAR-T and indolent lymphomas, including the kind of slow-growing Follicular Lymphoma that most of us are dealing with.

The first results of the ZUMA-5 trial were presented at ASCO earlier in the year. The results were very good. Zuma-5 has 94 patients with relapsed or refractory indolent (slow-growing) lymphoma, 80 of them with Follicular Lymphoma. After about a year of follow-up, 94% of patients had a Response, with 73% having a Complete Response. Of the FL patients, the response was even better -- 95% Overall Response, with 80% getting a Complete Response. The results were good enough that the makers of this CAR-T version applied for FDA approval.

Now, about 6 months later, the question was, did those results hold up? Did the responses last even longer? That's an important issue with CAR-T. Early results from ZUMA-1 showed that about 1/3 of patients had a goof long remission, about 1/3 had a response that lasted a year, and about 1/3 did not have a response at all. Later trials show longer responses

The ASH presentation is called "Primary Analysis of Zuma-5: A Phase 2 Study of Axicabtagene Ciloleucel (Axi-Cel) in Patients with Relapsed/Refractory (R/R) Indolent Non-Hodgkin Lymphoma (iNHL)."

The trial has expanded, and these results look at 146 patients with indolent lymphomas, including 124 with Follicular Lymphoma. You can click on the link to find out more about the patients in the trial (like their age, gender, FLIPI scores, etc.). But this detail seems important --  55% of them were POD24, meaning their disease had gotten worse within 2 years of receiving immunochemotherpay, and 68% were refractory to their last treatment, meaning the cancer did not respond to the treatment.

The results were still great after 17.5 months. The Overall Response Rate for everyone in the trial was 92%, with a 76% Complete Response Rate. In patients with Follicular Lymphoma, the ORR was 94%, with an 80% CRR. The response rate was about the same for everyone, even those who were POD24 or refractory. And the response was durable -- at almost 18 months, about 62% of the patients who had a response still had that response.

Of course, the treatment came with side effects, as all treatments do. About 99% of patients had some kind of side effect, with grade 3 or greater (meaning more serious) in 86%. These included side effects that are common to blood cancer treatments these days, like nerve issues and blood count issues. About 7% has Cytokine Release Syndrome, which can be very serious. Most of the side effects were manageable enough to be taken care of by the time the results were reported, but a few serious ones remained for some patients. 

So, overall, this is great news for Follicular Lymphoma patients. This new data will obviously be considered by the FDA when they look into whether or not to approve this CAR-T for indolent R/R lymphoma patients. If results continue to hold up, we might see another option soon.

There are a couple of other interesting presentations to look at, too. Give me a few days to look into them a little more, then come back and read all about them.



Friday, December 4, 2020

ASH: The Leonard List

For today's look at what's happening at the ASH conference, I want to highlight the 2020 Leonard List.

John Leonard is a blood cancer researchers and certified Lymphoma Rock Star from Weill Cornell Medicine in New York City. Each year, a couple of weeks before ASH, he publishes The Leonard List, the 10 presentations at ASH that he finds more interesting or significant. He posts one a day on Twitter, and discusses them on CancerCast, the Weill Cornell podcast devoted to cancer.

This year's Leonard List podcast (along with the other CancerCast episodes) is available here

Sometimes Follicular Lymphoma makes a lot of appearances on The List. Not so much this year, at least not any new researcher that might really change things for all of us. (That's kind of rare, anyway.) The podcast includes his top 10 list, plus an additional 5 presentations. This year, he includes one Follicular Lymphoma presentation in his top 10, plus one in his 5 bonuses, plus another one that is more general, but interesting anyway.

#5 on The Leonard List is called "Racial and Ethnic Disparities in the Survival of Patients with Indolent Non-Hodgkin Lymphoma in the United States: A Population-Based Analysis."This study looked at the SEER (Surveillance, Epidemiology, and End Results) database of cancer patients to determine if there are differences in outcomes among patients with slow-growing blood cancers of different races. They looked at the records of over 63,000 patients (35,466 had Follicular Lymphoma) and found that, unfortunately, there were differences. Over the last 20 years, racial minorities, overall, had lower survival. Native Americans and Alaska Natives had the highest mortality, followed by Non-Hispanic Black patients, Asians/Pacific Islanders, and Hispanics.The study doesn't look into why this is the case, but the researchers think that access to health care might be a big part of the reason. they hope their research will encourage other researchers to find out more about why these differences exist. I think it's a good time for this research, and I think even it might not seem like all of us are affected by this research, we all benefit from any study that shows how to make access to healthcare an easier thing. We all have a right to it.

One of the "bonus" studies on the Leonard List is called "Minimal Residual Disease Monitoring from Liquid Biopsy By Next Generation Sequencing in Follicular Lymphoma Patients." In this study from Spain, researchers looked at Minimal Residual Disease (MRD) in FL patients by measuring it with PET scans and "liquid biopsies." MRD is the tiny amounts of cancer that exist after treatment, maybe so small that they don't show up on a scan. But even a tiny amount can grow without anyone noticing, and by the time it is detectable, it may have become aggressive. By figuring out a way to find those tiny bits of cancer right after treatment, a consolidation therapy can be used (maybe something like R-maintenance) to clean up those little bits. The researchers in this study identified some biomarkers -- mutations that signaled that there were still little bits of cancer hanging around -- that got left behind, and then figured out how to detect them through a blood test. This research is still in its early stages, but it does seem promising. And it's important -- patients with MRD after treatment have worse outcomes than those who don't have MRD.

Finally, #7 on The Leonard List is not about Follicular Lymphoma in particular, but I think it's an important study. It's called  "Phase I Studies in Hematologic Malignancy: 20-Year Experience from Cancer Therapy Evaluation Program (CTEP) at National Cancer Institute/National Institutes of Health." The study looks at data from all of the phase 1 clinical trials for blood cancer treatments from the last 20 years, which involved about 3300 patients (about 920 with different kinds of lymphoma). As you may know, new treatments have to go through 3 phases of clinical trials before they can be approved. Phase 1 trials involve a small number of patients, and assess the safety of a new treatments (how sever any side effects might be), as well as how effective the treatment is (how many patients respond to it). Phase 2 and 3 involve larger groups of patients, and focus more on effectiveness, while also making sure the treatment is safe. Because phase 1 participants are the first to try a new treatment, it can be a little risky to be involved. Very often (but not always), phase 1 participants are patients who are running out of options. What's so great about this study is that it reaffirms that phase 1 trials are not only for the "desperate" patients. In the last 20 years, more trials involve targeted treatments, rather than traditional chemotherapy, and they are fairly effective: Overall, about 21% of blood cancer patients in phase 1 trials have a response to the treatment, and for lymphoma patients, it;s even better (40% response). That number has gone up over time. But at the same time, safety has remained about the same -- the side effects have not gotten worse. It suggests that targeted treatments might be even more effective by the time they get to phase 1. All of this suggests that patients should be encouraged to participate in early trials.

Which makes this an excellent time for an important reminder -- all of the great new treatments being discussed at ASH can only be great if there are patients who are willing to try them out. If you have a chance to participate in a clinical trial, please consider it. When I meet with my oncologist, I make it a point to ask about new treatments, and as we talk, I ask if any are in trials at the hospital I go to -- trials that might be appropriate for me. Personally, I like to now the options that are available, even before I might need them. And that includes treatments that are in trials.

More ASH news to come. 


Tuesday, December 1, 2020

ASH: Financial Toxicity and Follicular Lymphoma

I'm back to looking at ASH abstracts after a short break to be thankful. (And thanks to all of you who commented. I've always said I would still keep up the blog even if no one else read it -- I like to write, and it gives me an excuse to keep up on what's happening with Follicular Lymphoma. But it's still pretty great to hear from other FL patients that I'm helping them.)  

As you probably know, ASH is the American Society for Hematology, and their big conference takes place every year at the beginning of December. The abstracts or summaries of the presentations get put online about a month before that, and I like to go through them and write about things that I find interesting. Not always the most important, but the ones I find interesting.

The ASH presentation that caught my eye today is called "Impact of Treatment Sequencing on Outcomes and Costs in Relapsed Follicular or Other Low Grade B-Cell Non-Hodgkin Lymphoma – Results of an Evidence-Based Budget Impact Model."It deals with an important issue for cancer patients, though they don't use the actual phrase -- financial toxicity. Just as cancer treatment has physical toxicity and side effects, it can have financial side effects, too. Too many of us already know this.

The researchers wanted to know, basically the best FL treatment sequence for the buck -- what is the most effective sequence of treatments relative to cost? What's the longest a patent can go between treatments for the least money?

To do this, they looked at data from research that has already taken place in the past. They compared treatments that are recommended by the National Comprehensive Cancer Network by looking at the number of treatment cycles that each treatment requires, the number of days a treatment was received, the duration of response (how long it keeps working), rate of side effects and associated costs (like medicine to treat nausea, for example), and total treatment costs, including drugs, medical treatment, and laboratory testing. All of that information helped them figure out how much each treatment would cost for a typical patient (one that had the typical amount of treatment for the typical amount of time for the typical cost).

They looked at all of this information for a few different scenarios. Follicular Lymphoma is considered incurable, which means patients often need multiple treatments. So, using the NCCN guidelines, they looked at typical first-line treatments (the first treatment a patient receives), consolidation treatment (sometimes given right after first-line as a way of cleaning up any left-over cancer cells), and second-line treatment (given after the first-line stops working). 

The specific first-line treatments they looked at were Bendamustine + rituximab (BR); Bendamustine + Obinutuzumab (OB); CHOP rituximab (R-CHOP); CHOP + Obinutuzumab (O-CHOP); CVP+ rituximab (R-CVP); CVP + Obinutuzumab (O-CVP); and Lenalidomide + rituximab (R-squared). [No straight Rituxan? Hmmm.]

The Consolidation treatments they looked at were Rituximab maintenance (RM); Obinutuzumab maintenance (O); and RadioImmunoTherapy (Zevalin).

The Second-Line treatments were RIT; Lenalidomide only; and Lenalidomide + Obinutuzumab (LO).

You get all that? 

They looked at the cost for each of those treatments, then added up the cost for the possible sequences. Maybe a patient first has RCHOP, consolidates with R-maintenance, then eventually needs Lenalidomide a few years later. Now create sequences with all of the possible combinations. 

I'm not going to go through every combination, but I encourage you to look at the abstract and see the tables with the information. It's pretty easy to read. 

What the researchers highlight:

The treatment sequence of first-line BR followed by Consolidation with (Zevalin) had the longest predicted duration of response (2586 days, or a little over 7 years). The cost would be $212,485. Next best was BR followed by R-maintenance, costing $233, 388 for a duration of response of 2478 days (a little under 7 years). The predicted duration of response for treatment sequences that started with O-CHOP, O-CVP and R-CHOP and then followed by Zevalin were about 1000 days (roughly 3 years) less than BR + Zevalin. 

The longest duration of response came from BR followed by Lenalidomide + Obinutuzumab, at 2778 days (about 7.7 years), but at a cost of $796,695.

Again, look at the link for more. It's pretty interesting.

[And, as I look at this again and think about you, dear readers for whom I am thankful, I know many of you live outside the U.S. and those numbers don't mean much. So here's a small gift: a link to a site that lets you convert currency.]

What I also find interesting is that a couple of treatments involving Lenalidomide had astronomical costs -- BR with second-line Lenalidomide, and R-CVP followed by Lenalidomide, each cost over $4 million for a typical patient. Lenalidomide has to be taken every day, as a pill. That adds up (especially if the price goes up.) Zevalin keeps costs down because it is given in just two doses.

My thoughts on all of this (as always, I remind you that I am not a doctor, so don't take anything I say as medical advice. Talk to your own doctor about that):

There are, as always, some warnings about research like this. It looks at published data on median or "typical" patients, so the results are going to be different for every patient. Some will get a longer response from first-line treatment, others will not respond to consolidation, etc.

But I think those "typical" responses are how insurance companies (in the U.S., or national healthcare agencies in other countries) decide on which treatments to recommend. And, in the unfortunate situation that a patient has to pay all or most of the cost of treatment, this kind of sequence analysis matters -- how many days of being free from cancer will I get for the money I pay? Better to lay less for a shorter response? Pay more for a longer response? Find some way of balancing the two? This research helps to answer those questions.

The really big take-away for me, though, is in comparing the costs of treatment to something like CAR-T. When different versions of CAR-T have been approved, there was a lot of discussion about their cost. Since each treatment is created specifically for an individual patient, the cost is pretty high -- up to $500,000. 

But if you are a patient who gets a long duration of response -- maybe even a cure -- for a half million dollars, that seems pretty good compared to, say, BR followed by Lenalidomide + Obinutuzumab, which would cost almost $300,000 more. 

And as far as financial toxicity goes, I really appreciate that the researchers considered not just the cost of the treatment itself, but of all the other things that go with it, including laboratory fees, medications to deal with side effects, doctor visits, etc. Those things matter. It would be a lot harder to calculate, but it would have been even better if they had included things like lost wages from missing work on days when fatigue was just too much.

But honestly, I'm happy with what the researchers do include here. It's an important topic, and one that doesn't get talked about nearly enough. I'm guilty of it, too -- I get excited about new treatments without thinking about how much they'll cost, and if they will be affordable.

I hope more research like this comes out, and gets a lot of attention. At least in the U.S., financial toxicity is a major issue for too many cancer patients, and awareness of the issue just might lead to something being done about it.


Thursday, November 26, 2020

Thankful

Today is Thanksgiving in the U.S. It's a day we set aside to be thankful for lots of things. I do my best to reflect on what I'm thankful for every year, because I know it's easy to take things for granted.

Of course, it's a tough year for a lot of people to feel thankful, as Covid-19 has had such a large effect on everything we've done for much of the year. Thanksgiving is no different. This is the first Thanksgiving since my wife Isabel and I were married that we won't be with extended family. We almost always travel to see one of our families; very occasionally, family travels to see us. But this year, it will just be us and our three kids. I'm thankful to have all of them here with me. 

We'll have a traditional Thanksgiving dinner, scaled down for the five of us, and for the first time, the kids will really play a part in doing the cooking. My wife and I spent about six months as "empty nesters," with the kids all away at school or on their own. I was thankful for that. We've sent another eight months with a full house. And we'll probably end up with an empty nest again in a couple on months, as the kids all try to get some normalcy back in their lives. We'll be thankful for that, too. If nothing else, cancer teaches us how to appreciate whatever it is we have in front of us. 

Isabel and I went for a walk this morning, as we have been doing every morning since the spring. It was very rainy, but we did our full walk anyway. It was very quiet, too. No one else out, probably sleeping in a little because of the holiday, and the rain. We dodges puddles. Usually we dodge neighbors. Our neighborhood is very walkable, and we usually encounter a dozen or more people as we do our walks. We always say good morning, and there's always a little contest where we try to get out of one another's way, crossing the street or taking a few steps up someone's walkway, making sure we stay six feet from one another. I live in a neighborhood where people take the pandemic seriously, and treat one another with respect and kindness.  I am very thankful for that, too. Sometimes it seems like that's a rare thing.

And on our walk, we talked about family, and how much we want to see people we love, and how hopeful, we are for a vaccine (or two, or more) that will allow that to happen soon. I am extraordinarily thankful for science, not just for what it has given us as cancer patients, but also for the hope it has given us in the pandemic. The vaccines that are being developed will be done fast, much faster than ever before. That comes with concerns, making sure it's not being rushed. But I trust the science community to look at the results carefully. I truly believe that the developers will make a lot of money, but that they also understand that if they mess this up, it will hurt them forever. Everyone involved wants this to succeed. I'm thankful for that, too.

And, as I am every year, I'm thankful for all of you. You give me a reason to keep writing and to keep learning and sharing. At the risk of leaving someone out, I'm going to name a few names. To William for his thoughtful comments, and for sharing his experience. For Rodrigo (and his mom), for reminding me that I things that help people far away. For Save Pig, who likes what I tweet, and shares with me a deep desire for travel and hugs. For Popplepot, who I would love to share a whiskey with some day. For Ben, who teaches others about CAR-T. For Jacqueline, from the breadbasket of the world, whose neighbors probably grew something on my table. For Sharon, who made my day on her own Thanksgiving.

There are more of you, so many more, and I wish I could name you all. But know that I'm thinking of you, and thankful for you, too, even if you never comment, never leave your name, never let me know that you are there. I do know you are there. (Google counts you, even if they never tell me your name.)

I hope you all can take a few minutes today to think about good things in your life that you are thankful for and happy about, even if it's not your "official" day to do so. We have lots to be hopeful about.